I wish I had found you before my precious mother died in Hospice care this past month. We (my sister, father and I) didn't know. Mom should have been in hospice care a good month or two before she passed but we did ALL of the wrong things. We demanded she eat, shower, move, get into her wheelchair, stay awake and up during the day (although she begged us to just sleep in bed all day). We thought we were doing the right things. I remember how petrified I was that if I didn't demand she live, she'd die. I never considered that I should let her die in grace and peace. I wish so badly I could go back two months ago and make very different decisions with how I talked to her and treated her. I will be haunted by that until the day I die. As for hospice care, It was like a wall of bricks to the head when we finally called a local hospice and got Mom set up at home in a hospital bed and began the caretaking. Thank God my aunt, Mom's sister, told use to call hospice care and not take Mom to the emergency room (where she would have died in a cold hospital bed). Fortunately, we had an angel (her name is Dana) for our hospice nurse. Her kindness, care, consideration, knowledge and empathy were everything to us - a lifeline that no one will appreciate until they are in our shoes. She told us what you explained in this video, all of it and more. My mother died at home after 2 days in hospice care and she died with us being her main caregivers. My last memories with her are of stroking her forehead, rubbing her chest, holding her hand, singing to her, telling her over and over that I loved her, that I'd be there for my sister and father. I know this will sound weird, but witnessing my mother die wasn't a horrific event. It was, however, jarring, traumatic, and emotionally so painful, but only because I was thrown into it last minute, completely unwilling to accept that Mom was in fact dying. This is why people like you and Dana are so, so critical. Families need this information desperately. Thank you for putting this information (and all of your videos) out for others to learn about end of life care. I'm now prepared to do the caregiving again. It will be just as emotionally painful but not jarring, not traumatic. I will be prepared. Bless you, Nurse Julie, you kind, lovely woman. We need more of you (and Dana).
Don't be too hard on yourself. I can tell you really loved your Mom. This might sound 'cheesey', but 'you only know what you know.'I'm sure your Mom felt the love that you had for her. ❤
Thank you for sharing that candid expression of how difficult it is to care for someone you love who is about to fall asleep in death. I learned something from your experience, and am very grateful.
This comment makes me so sad. Whewww. 😭 so many families don't understand the process or only take their own feelings into consideration and not the family member on their final stretch of this journey. They only think of their selfish needs and not wanting to help "contribute" in letting their loved one go. You guys thought you were doing the right thing (same as many, many others) and were trying to keep her longer! Don't beat yourselves up, she understands now and is hopefully pain free and watching over you! I don't know the exact circumstances and if she was in the hospital or not in the weeks leading up to her passing, but if she was I wish a social worker or someone would have explained what was going to be happening possibly so ya'll would have know what to expect and do for her. Forgive yourself as she fully forgives you and knows you were trying to help, she would not want you to beat yourself up for the rest of your life.
My mom watched her figure her whole life. We offered her a piece of cake when she was in Hospice. She wanted it but she was still worried about her weight. My sister told her it’s time to have your cake and eat it too. She laughed and then we all laughed. It was a wonderful moment. She sure enjoyed that big piece of carrot cake😊. She ate it all!
Ooh my gosh, my mom is on hospice and today was such a hard day for me she is bedridden with dementia and blind but the sweetest woman today we struggled with issues with dementia and I broke down crying she’s been bedridden over two years and I am sole caregiver my mom who is on hospice grabbed my hand and told me “you are doing a great job don’t beat yourself up, I am safe, I am comfortable and I am loved” I beat myself so much. I needed to hear that, your last comments thank you❤❤❤❤
I am so glad that I had found this channel. I never forced my son to eat. He just stopped eating the day after Christmas. I let him have his cigerettes and if he wanted a shot of some alcohol, I gave it to him.. The only thing he wouldn't do for me is shower. He would say he thought today would be a good day to shower, but not right now. Then by late afternoon it was too late. He would tease me with the shower thing many times. He never lost his sense of humor. Some days I think I didn't do a good job. But now I am glad I did what ever he needed and wanted. My niece and daughter gave him a bed bath and washed his hair and he looks so comfortable. He "slept" thur the whole bath. He died peacefully early the next morning. And I was able to remain sane only because you had told me what to expect. Thank you
@yaassss5531. I’m so sorry for your loss. My Dad also passed away recently (5.30.2024) and only had hospice less than 2 weeks. Hospice nurse Julie helped me be a more prepared caregiver. The hospice company we had was just ok. My Dad’s nurse had a difficult time figuring things out with my Dad. I followed my gut and it was more accurate than their years of training. That being said, it was the scariest and most traumatic experience of my life. I still feel like we failed our father. 😢. No more pain and suffering for him. I miss him terribly.
That last part struck a chord Julie. When Mom was on hospice, I was blaming myself for her being there. After Dad died, I was supposed to take care of her, and clearly I let her down. I've dealt with that, but when the hospice sent out the social worker she was surprised. The other surprise I had for her was when she said "If this gets to be too much, we do have a hospice house." I told her "You will take me out in a body bag before I let you put her in a hospice house. I promised her she'd die at home, and so help me God, I'll do everything I can to make sure that happens." You are right Julie, being a caregiver is a very hard job. I did it for both Mom and Dad, but leading up to hospice and finally hospice itself. I was holding both of their hands when their hearts stopped. I made sure both died in the home they loved, and had made into a home for over 60 years. There were nights of getting up at 3am because Mom wanted oatmeal at 3am. There were nights were Dad called out because he wasn't sure where he was (he was legally blind, so he couldn't see his surroundings well, and his mind wasn't working great, so he couldn't sense things the way he did before he went downhill). So many other things too. BUT, all that said, it is the hardest job you'll ever love. And, I take great comfort in keeping that promise...they did not die alone, and they died in the home they loved. The one thing I would suggest to caregivers...ASK QUESTIONS. If you don't know something, ASK! Ask the hospice nurse. Ask the persons primary care doctor. Even if you think the question is stupid, ask it. That way you can give your loved one the best care that you can.
When I was doing my practicum as a nurse practitioner, there was a man in his 90s who was reported by nursing home staff having aggression. Looking at the time of the aggression, we figured there was probably something going on in his G.I. tract, and he did die of a G.I. bleed a few months later. His wife, obviously, given his age and dementia, did not want to pursue this. But I pulled in a behavioral psychologist who noted that most of the aggression was at meals because he was trying to steal other peoples desserts. He was a diabetic. We immediately pulled the dietary restrictions. People tend to focus on one problem and ignore the big picture. So thank you for pointing that out. It’s very important.
Julie, thank you for doing this channel. My husband is 69 and on hospice with cancer. Yes it is so very hard and watching him suffer from pain is the hardest thing. He has worked hard and taken such good care of me for 48 years and now it’s my turn to take care of him. Your channel has been there for me. With tears I want to say THANK YOU 😢
I wish you the strength you need! This has got to be the hardest thing to do. My husband had a brief illness before he died, but he was in the hospital. I don’t know if I would have been able to see him suffer. My heart truly goes out to you!!❤️💕💚
Don't force feed. Offer them their favorite foods. Don't force them to stay on a healthy diet. Let them have what ever they want... icecream, beer, whiskey, pizza, chocolate. Don't force them to get up. If they want to stay in bed and watch RUclips, let them. Unless they need to get up so that you can change their sheets. Do not be hard on yourself.
Amen 100% I remember when my dad asked for a malt and I ran all over Detroit to find malt etc. Made it, he was able to eat a couple of tablespoons and said, "I am full" and I knew his time. Was getting near. Miss dad but so glad I did the work to make him his last malt! Katy
Thank you for all you do. Caregiving is extremely traumatic, and our society puts so much on family caregivers who aren't prepared for a job they never expected. Imho, expecting everyone to be able to do this is like expecting everyone to be able to deliver a baby. Not everyone can, and many of us who do will be traumatized. Unfortunately, some hospice companies don't do anything to help except show the caregiver how to administer medications. Home hospice is not for everyone. Caregiver PTSD is real but hardly anyone knows about that except for those who have been there. Thank you for understanding how overwhelming and traumatic caregiving is. Unfortunately there is no help available for many of us.
Do not feed a dying patient. THANK YOU for this. I have educated countless families on this topic! I encourage people to trust the patient and what their body is telling them!! Don't force like you said.
I worked in Healthcare for 30 years. One of the biggest mistake I saw caregivers do : insist that their loved one be given IV fluids, because their loved one refused fluids. Another mistake was the caregiver not taking advantage of the benefit of Respite care. It's important that caregiver's get time to recharge.
Our hospice offered respite, but it was at a hospital an hour away. My mother was totally bedridden and on oxygen 24/7. I had no way to get her there on my own and they didn't offer assistance. And I was told I had to take all 5 days of respite at once, I could not break them up as I needed them. If I took two days of respite, I would lose the other three. So I never took respite because it just didn't suit my needs. I didn't like the idea of my mother being back in a hospital anyway. She had already spent so much time in hospitals before that and I think it traumatized her.
I was caregiver for my dear mother who passed away end of February and totally agree that we shouldn't be so hard on ourselves...i am just now coming to terms with things after almost 4 months. It is truly the hardest thing to do to try and take care of a loved one ..trying to show them dignity and love during their last days...Thank you for your kindness to people..❤ God Bless..
This is such god content. I work as a lowly safety sitter in the ER of a local hospital. Often my patients are younger and suffering from some mental health crisis or another, usually with anxiety or trauma being the underlying cause. But oftentimes I sit with older people who might be experiencing some form of dementia, or they might be in hospice care. Easy for me compared to the home carer. My patients come in. They leave after a few days (it’s an ER). My shifts begin and end. I get to walk away. It isn’t like that for people caring for relatives at home. Of all the things Nurse Julie has said in this video her third point stood out. If you are a home carer you are doing an impossible job, probabaly really well, and very likely feeling that you are failing. You are not. But I will share this… Sometimes you just need to have your shift end too. The professionals do. You do too. And that’s where the wider community comes in. There are resources. Your community probabaly has more to offer that you realize and maybe not where you are expecting to find them. It might not be official or formal. It might be a well meaning neighbor or friend. And then… sometimes that’s exactly why I sit with my older patients. It just all got too much and someone needed a few days off. The carer came to us. We will generally admit the patient for observation for a few days, try to get everything back on track, provide that much needed break for the primary carer. And that gives us a chance to make sure the patient isn’t having any physical health issues that might be contributing. For example, unitary tract infections can be a catalyst for this situation because in older people they can result in dramatic changes in behavior, and if that is the case its good news because a few days of antibiotics and the infection is gone, the more recognizable personality returned. We can’t do that for everyone all the time. But if you have run out of anything to give, if you are in crisis, then its OK to call for that avenue of help. Ours is a small hospital in a small town in Massachusetts. We know we are providing a community care service as well as the physical healthcare we are generally there to provide. And we also know that you are amazing.
I appreciate what you do! Please don’t say you’re a “lowly sitter.” My brother was in a bad accident at the age of 25 when a semi ran a red light and hit my brother’s pickup. Brother had a TBI as a result and during part of his recovery, he needed a “sitter” for his own safety. We appreciated whoever was sitting with him. So your role is very important! 😊 Thank you!
Julie, I can’t thank you enough for this video tonight. My dad just went into the hospital last night. He is now not even able to stand up and some days he is so weak he can’t feed himself. He has been sliding out of his chair at night and the paramedics or fire department have to come and lift him back in. I just can’t do it. He’s lost 35 lbs since January. Everything you are saying in this video is so right on point. My dad is terrified of going into a nursing home as my mom and his father died in the same one. I have become so depressed and overwhelmed, I don’t know who I am anymore. I feel like I have failed him and my own family. My dad has a way of making you feel like crap, and I try to let it go. I cry when I go to bed. I know he’s scared but it’s no excuse. Thank you for saying we are good enough as caregivers. I truly want to believe you lol. Thank you for all that you do ❤
Ps he has a collapsed lung and they don’t know if it’s mucus or food particles. He has pneumonia,hypoxia ,and acute respiratory failure. If he doesn’t do exercises to bring it up, they are going to go and suck it out. His 02 is 83-85 and I am so 😨 scared
You will never regret caring for him. There is a lot of comfort from knowing that you did your best for him until the end. You are doing a wonderful thing, even when he is grumpy. Tell him straight, let him know gently if you need to that he is not being fair. ❤❤❤
Tell him...dad I love you and I am doing my best...I am always going to be here for you...forgive me if you think I am not doing the best I can... Now I know this is difficult but I understand exactly what you are going through... In the end you are going to feel better...that you have done everything you can do for him...and that he knows how much you love him. How he reacts to it... That's on him. Take care my dear...one day at a time.
To be a caregiver is the hardest thing to do. Please, please take care of yourself too. Never blame yourself, you do the best you can ,that’s all you can do. It’s heartbreaking, I totally get it, but never feel you failed anyone. Just from what you wrote shows you are caring and worried and if you didn’t care, you wouldn’t have written those words. Remember what she said at the end” DONT BE HARD ON YOURSELF”. Take care, my heart goes out to you ❤️💚💕
I am 67 now and when I was in my 20s I took care of my Mom, and Grandparents before they passed on. No Julie I never forced food or drink. I always let them set the tone for the day. Right at the very last they had to be hospitalized. This was the early 1980s and Hospice care didn't exist in the Long Beach, California area. I do like the concept of Hospice care. I have researched enough to know it works and works very good. Keep up the great work you're doing Julie.
My little brother lived with mom and cared for her. I didn’t realize how difficult it was for him until she had a hospital episode and while there he took his life. The what ifs began and until I found you they colored every area of my life. I was constantly thinking about how I could have done better. Those thoughts still come up at times but they don’t have the critical failure component to them. For that I thank you, the information is powerful at keeping me balanced.
I'm so,so sorry. We used to teach boys to "be tough" and make them feel lesser for asking for help..so many men take their lives without giving anyone a chance to see that they need help because of the social pressures, the awful, unjust messages that they heard most of their lives, messages that they need to be tough and just brute force through everything,no matter how hard , that "real men don't cry". I hope you are sharing your brother's story, it may help save someone's life.
My husband and I did our best for my mom. She has vascular dementia and broke both hips, a year in-between. She couldn't walk after the 2nd surgery. But we were going to do whatever we could for her. We got her setup in a hospital bed in our house. We never forced anything on her. But the fact is this: she was bedridden and incontinent, and *I was too weak to roll her over to change her*. My husband would come home to help, but i needed 24/7 help. I cannot feel guilty forever for getting help in the form of a "home." The best in town, though. I won't let people, especially strangers, make me feel bad for this decision that we did not take lightly.
@@hikeeba44 please remember you are only one person. A home has numerous staff on duty 24/7. You did your absolute best sometimes our loved ones need nursing care.
I do understand your decision.My mom had diabetes, lewy body dementia and liver, heart disease. The dementia was something out of a horror movie. I along with one of my brothers and Dad who did not understand what was happening cared for her at home. I'm still traumatized. This was during COVID. No help was available. But hospice was there, My only sanity.
My dad got very agitated and insisted he get out of bed. We knew he wasn't strong enough to walk, as he'd already fallen once and my husband was the only one able to get him up and back in bed. I called the hospice nurse pleading for help. She told us to call the ambulance, as she lived 2 hours away, and there was nobody else to call. My dad ended up passing in the hospital 2 days later. Maybe I'm being selfish, but I feel some people cannot mentally handle end of life caretaking and should not be expected or obligated. The last 3 days of my dad's life was a never ending nightmare. Even whole at the hospital, when he'd become the least bit lucid, he'd fight and try to get out of bed. I've told my daughter and husband if/when I'm at the end of my life, please put me in a facility that is equipped to care for me, as I understand they may not be mentally able. The only thing I ask, is if they get a call, please do not let me pass alone. Unfortunately I found your channel right after he had passed. I could have prepared myself for so much more.
My father’s short term memory is so bad he doesn’t remember he can’t hop up. He is in a nursing home. He is angry. I couldn’t take care of him even if I had all the money in the world.
‘’Poem 22: Love Notes to Soul’’ is a lovely book to read to yourself as a caregiver or to the loved one you are caring for. Words and presence are so healing. And that is why this book was written. I’m a caregiver for my mum. She’s advanced in her stages of cancer. And every moment with her in this journey is a gift. Love to all of those reading this and hear at this moment in space and time. And Julie, thank you for your wonderful videos. They are helping so many people. You’re truly living your purpose and that is a beautiful thing.
Putting knowledge to work in the right way leads to wisdom. Hospice administers wisdom during the process of dying. There are many wonderful doctors that have sensitive consciences and so they encourage the living to defy dying when there are no other options. Our beloved doctors are taught to do no harm, to prolong life and maintain it. Julie, thank you for helping society to understand that the purpose of Hospice is to be a balm and lessen the sting of death, because death is an enemy to the eternity that was put in our hearts. Our bodies are designed in a remarkable way and is proof that we can live without dying someday but until then, may doctors learn to see the process of hospice, not as a defeat but as a companion of compassion to the dying process. I am so very proud of you young lady and when you’re on your first televised interview, as a shout out to your RUclips, posse, tug on your ear as Carol Burnett did for her grandmother at the end of every show. 🤭
New fan of your channel 👍🏻 It's given me a better understanding of the thing I fear the most DEATH ☠️ I hope someone like you is around when im on the doorstep,your a special breed of human 🙏🏻
Every hospice company should put out videos like yours. I've just watched my brother in law pass from Alzimers and I should have taken time to rewatch some of your videos that I watched years ago when my mother passed.
I took care of my Mom during her last few weeks. I had very little support but would not trade the experience. One evening Mom said she wanted a Highball. I paused thinking of her meds....specifically the Ambien and Valium. She was adamant and I thought maybe it would help her sleep. So....1oz of Seagrams (yuck) and ginger ale. She nothing short of inhaled that drink. The pleasure on her face and her saying it was soo good. However, it did not help her sleep any better. The next night I asked if she wanted another Highball. So...glug glug glug went the Seagrams and glug went the ginger ale. It still didn't help her sleep, but the joy she felt....
I wish I had watched your videos when I was caring for my Mom. She had dementia and I know now that she was having some issues with aspirating. I had no support from her neurologist, even though they gave us a support person who never returned my calls. Hospice was helpful once I convinced them that she was ready for hospice. She died 2 days after hospice began at home. I expected more support and information from medical people. I won't make that mistake again.
Your last one made me cry. It’s not just my husband with multiple system atrophy, my co-grandma and friend (friendma?) was just diagnosed with metastatic (spinal) mucinoid adenocarcinoma. She was my support. I am being torn by mixed expectations. Too much bread, not enough butter…
My brother & I were caregivers for our 86 year old mother She passed in a hospice facility after 9 day's.Your vids were a godsend for me.She wasn"t ever a loving mother in my opinion.If it wasn"t for AA,ida been dead many years ago.Life is hard!(The Road less traveled"-)Give yourself a break(I don"t mean you, mean caregivers..Love you nurse Julie,I know,that" you get"what I"m saying.Hope your in a great relationship!You sure as hell,deserve it!
Good advices! Thank you. I am kind of lost but doing courses, reading and watching videos like yours to give my mum the best care in my home, and yes, its hard and I learning how to do things with less pain in MY back. Thank you darling!!!
I was blessed to have found you just before my beloved husband 's body began to shut down and my son and I were able to make my husband comfortable until he died. My only problem was that I didn't know how to turn him with his catheter in and I allowed the hospice nurse and aide to turn him and they were rough. Even with 1 ml of morphine every 2 hours already for a week, he screamed in pain and he died later that day. I ordered your book and packed it away with the other things I used to care for my husband so when it's my turn my sons will have it ready and not need to buy it. Thank you for sharing your experiences and explaining why and what to do.❤
Thank you, Julie, for your videos. I just wish I knew some of what you have been teaching us Before my father needed to live with us. My father came to live with us after a small stroke left him no longer able to live by himself. I knew he wanted to "go." He had just turned 90, he was no longer able to walk on his own, he was tired and I knew he was wanting to leave. So we explored the opportunity of "voluntary stopping eating and drinking". Online reading convinced us that refusing food and drink was Not suicide. So he tried it for a couple of days and thirst got the better of him, but at the same time he pretty much lost his appetite for any food, so he did die naturally anyway, however, it gave him comfort and the Power over his own life, that he Could refuse anymore sustenance in order to end his suffering on his terms. Miss you Dad. 😢
Thank you, Julie, for all the great advice for us caregivers. My husband is 54 and on hospice for terminal metastatic melanoma. If I had not found you, I wouldn’t be able to care for him as well I am! You are a wonderful communicator and teacher! May you be blessed beyond measure. Much love❤
Hello 👋 appreciate for your video and I'm really need that video. Because i will start working as a caregiver job next week and this is the first time. I don't have any experience. I am so nervous 😢 😢😢😢😢 . I am always watching all your videos and saving them. Thanks 🙏 again.
my husband was diagnosed with glioblastoma stage 4 brain cancer in January of 2024. he has been very difficult and angry, i am very sad i have lost my best friend. your video has helped me alot. you are fantastic.
Thank you Julie. I wish I had known about your channel when I was taking care of my parents at the end of. They were both on hospice at the same time and actually passed on within 5 days of each other. It’s a very lonely time and it’s a hard job. But I’m glad I was able to do it. Now my husband has dementia, 62 years old, but I’m learning a lot from you. Thanks again.
First of all thank you for all the informations you give us. My dad died 2020 and I realized that I made so many things right. Your videos gave me such relive because I was not always sure that I did the right thing. I did not force him to eat or drink, I did not tube feeding, I did not insist on his medications and so on... some people said he needs fluids and he needs an IV. Something inside me did not want to do all that. Now I realise that this was the right decision. Thank you so much.
I wish y’all had been around, 1998 - 2004. I had VERY little help, and a sister who would essentially “paint the walls” in my house (where our mom lived). I chatted with the oncologist because things were accelerating, and Hospice was activated. I had the job of telling Mom, and then sis stepped in and decided to cancel it to have one more round of chemo, and then left me with the mess. Hospice was an absolute God send…both times.
Thank you for this. My brother and I are currently caring for our father who refuses to see a doctor. He has NEVER seen a doctor as far as we know. We know he is dying we just don't know exactly from what. So, no hospice nurse or doctors to call for help. It's just us trying to do the best we can to keep him comfortable with no real idea of what exactly is going on with him. I just keep searching the internet for info on his symptoms. It's the most helpless feeling I have ever felt.
On November 1st, my hubby told me he needed to go to the ER. He had felt odd for almost a year and several dr's said it wasn't serious and sent him home time and time, again. The evening of the 1st, he had x-rays which showed metastasized st. 4 Pancreatic cancer. He was set up on Hospice after both of us stayed at the hosp for 3 nights. He was given 3-6mos and since he was a pastor at the time, he was ready and left on Nov 15th. Luckily, for us, it was a short ride to the end. The main issue was he couldn't poop, for days. He finally did and tried to get off the toilet and couldn't even with me trying to help. He slid down and was on the floor and passed.
I just wanted to say thank you Julie, you answered some of my questions in other videos about those who pass away from renal failure. My husband had kidney disease and due to another medical problem that he developed 14 years prior, he couldn't do dialysis. He passed away today June 9, 2024. He was 61 years young, but had many health problems. I already miss him dearly ... it has been a whirlwind of emotions today, and tomorrow we deal with the funeral home... Before he passed away, we listened to some music, one of the songs was the one we played at our wedding "I will be there" by Steven Curtis Chapman, our 25th wedding anniversary is June 12th, 3 days away. We listened to Amazing Grace by Peter Hollins and Home Free, it was one of his favorites, and said he wanted it played at his funeral, I wanted him to hear it and other songs one last time. We shared family memories with his nurse, had some laughs about the fun we had as a family as we watched and listened to him take his last breath... he will truly be missed! On the way home, I turned on the radio to hear one of his favorite songs... "Every breath you take... I will be watching you" by the band The Police, perhaps it was his way of saying he will be watching over me... and our family. To those of you reading this... remember that tomorrow is never promised, for the old or the young! Spend time with those you love... put down your phones, your games, and any differences you may have or had, life is too precious to be distracted by THINGS that really don't matter!! Share some love today with someone who misses you, but you will miss once they are gone and you wished you had made more time for them! Spread some love... isn't that what our world truly needs right now?!! ❤❤❤
Dear Julie! Thank you SO MUCH FOR YOUR ADVICE. Our father passed last night, peacefully. It was comforting to hear what to expect and also what to do. 😊 Such a blessing!
We didn’t know my Mom was sent home to die. The doctors never said anything about it. We were told her medications were going to change because they had better meds for diabetes. We tried feeding her cause we thought she was going to get better. I wish we would’ve known better
I am an 80 year old man with heart failure on in-home hospice with twice a week visits by RN. My Caregiver is former CNA wife of 58 years who is, you guessed it, also 80. Do you have a video on do's and don'ts of being the patient?
Hey there♥️ Just my humble thoughts and opinions here but… start out by being yourself. Be honest with your partner about how you are feeling- even if it’s something that is difficult for you to say. You’ve been together for a long time and your partner deserves to hear from you about how you’re TRULY feeling- even IF it’s not great. This applies with speaking with your Dr’s too. If you’re feeling depressed they need to know. There IS help out there and support for you AND your partner. And there may be things you might not be able to speak with her about just yet or maybe even ever. But you may need SOMEONE to talk with about it- and professional, confidential support IS out there!!! Be kind to yourself!!! You’re going through something major!! And it’s NOT easy!! Mentally, physically, emotionally or spiritually!!! You can’t right all the perceived wrongs you’ve done in your past. You can’t make amends for everything you’ve think you’re done wrong. And you’ll make yourself crazy trying to think of ways to fix it and do just that!!! If you ARE spiritual you’ll know what to do. If not then you can try to reach out to people who you wish to reach out to and do what you can- in sincerity WITHOUT mentioning your illness. It’s about your righting a wrong for the right reason- NOT because your time here is limited. It’s about fixing hearts and relationships period. If they aren’t interested or reject this olive branch. That’s ok. You’ve done your best for the right reasons. About being a good patient? Just be a good person. When you’re sick, nurses understand you’re not always going to be all happy-go-lucky and cheerful!! Just be yourself hun. And if you’re at home, just be yourself there too. Don’t worry so much about what others think!! Just focus on you and your wife and family!!!! Do things that make you both feel happy!!! That creates memories together!!! Not sure if this is what you were looking for 🤷🏻♀️ but I hope it helps!!!♥️🙏🏻♥️ Sending you my sincerest best wishes to you and your wife and family!!! Michelle~ Retired Psychogeriatric Nurse
Just want to remind you about the most most important decision we need to make before we die, and that is to receive Jesus as our Lord and Savior. I just wanted to let you know a little about what the bible says. It takes more than just believing in God. John 3:3 says, we must be Born Again to get to heaven before our time is up.. Everyone has sinned and fallen short of God's glorious standard, and all need to be made right with God by his grace, which is a free gift. We need to be made free from sin through Jesus Christ. Bible also says, its not by works should any one boast. So being a good person does not get you to heaven either. The only way to heaven is by repenting of your sins, which means a change of mind, and putting your faith and trust in Jesus. Romans 10:13 says, Whosoever shall call upon the name of the Lord shall be saved. So you see, there is a need for salvation to get to heaven. That is why Jesus died on the cross. He took all of our sins upon him, so that if you accept Him as your Lord and Savior, you can have eternal life in paradise. You do not get there being a good person, or doing good deeds. Many people believe that is all it takes. Jesus also says, that I am the way, the Truth, and the Life, no one comes unto the father, except through me. So please make that decision, so that you can have peace and comfort before your time is up. Its the most important decision of your life. You can then have that peace and assurance of salvation in your heart. All you have to do is humble your heart and pray with faith,... "I repent of my sins, and I turn to You. You said in Your word that if we confess with our mouth the Lord Jesus, and believe in our hearts that God raised Him from the dead, we shall be saved. I ask You Jesus to forgive me of all my sins, come into my heart, and take control of my life. From this day forward I want to live for you. ..... It's not about the words, it's about your heart. The Lord will then send His Holy Spirit to live on the inside of you. The Holy Spirit is Gods seal of salvation, and your evidence you have been Born Again. He will transform your heart and mind. He will bring you into a personal relationship with Jesus. You will become a new person inside. 2 Corinthians 5:17 says: “Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new”. Its truly amazing! You will be filled with peace, love, and joy of the Lord inside you. All the fruits of the Holy Spirit. He will comfort you in your time of need, and give you the strength to endure. No matter what you are going through, Jesus wants to help you through it. You can lean on Him. Its the most important decision of anyone's life. God's Word says that we are saved by grace through faith in Christ Jesus and not by our own efforts or works (Ephesians 2:8-9). Grace Alone. Jesus is the only way to heaven. Please believe me, its all in the bible. Its the Word of God..I am not judging or condemning anyone, just letting you know there is much more if you put your trust in Him. Jesus cares for you, and does not wish for you to be separated from him. Please don't wait. Today is the day of salvation. He loves you, and does wish for anyone to be apart from Him, but to have eternal life in heaven. I'm praying for you. Please ask Jesus to come into your life today, my friend, You are special to Jesus. Romans 10:9-10. "If thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. Be blessed
Wow, truly informative information! I wish I had known about this channel 7 yrs ago! I made some of the mistakes you mentioned in this video 😢 I plan to have my kids watch it so that they don't repeat my errors. Thank you Julie 🥰
My father died in the hospital back in 2008. A nurse very forcefully and violently made him take a handful a pills with water. He hadn't been conscious in a week. I was young and dumb and had no idea it wasnt right. But subconsciously I must have. I always go back to that moment and all the regret i have for the things i didn't do because i was afraid and just so beat down from the long process of death. Im coming up to another caretaking time in life. I hope i can be better
My husband is about to pass and I asked him today how can I make things better he said he doesn't want to leave me but he wants me to let him go because he knew I'm not ready I told him I'll be OK the pain is ripping my heart out
Julie THanks so much for all this education. I really live ur videos that let us know it’s ok to let go and die. Do not be afraid. Thank you for explaining that in other videos. I think the caregiver is afraid not the patient. If that makes sense. Tfs.
Our issue is she has been bed bound almost a month with no walking and suddenly now expressing a desire for a shower.Says she must get up soon and exercise.At this point ,she is down to a skeletal state,no muscle mass and is probably under 100 pounds. I am terrified to get her out of bed( dementia ,latter stages)…-and keep redirecting.So worried about falls.
Thank you because I am a caregiver My husband feels I should push food. I do Not. I offer and yes some Days she eats well Some days no I’ve been in the position before with my parents. My husband has not
Thanks for your videos. They have helped understand what is happening with my 91 yo aunt who has dementia. On a separate note, her 14 yo cat has feline dementia so I've got the 2 of them, lol.
Sometimes its frustrating when the person you're trying to take care of just doesn't do anything to help themselves. I know they are the patient, but I think patients need to be reminded how the decisions they make impact the caregivers.
My grandfather died at 80 in the early 1960s and laughed when told he couldn't smoke or eat bacon. He pointed out he'd be dead soon from coal induced emphysema.
Try soft foods, i.e. pureed. Do you have a blender or food processor? Take his favorite food, say . . BBQ chicken, or whatever, and puree it. After blending, add warm water if it needs to be creamier, and blend again. Try spooning a half teaspoon at a time. His liquids may need to be thickened. There is a product that you add to liquids that makes it thicker and slower going down. Demented people will refuse food and drink if they know they will choke.
My mother at 97 years, 320 days, was resuscitated by the EMTs, despite a DNR order. The EMTs demanded to see the original, instead of the copy the board-and-care manager showed them. The original was stored in his file cabinet somewhere. She died in the hospital, never regaining consciousness. Her death was not perfect, but her life wasn't perfect either, so why would her death be different?
I'm so aggravated that my sister's palliative team didn't call in hospice sooner. She started getting where she wouldn't eat 5 months ago. Every time she did she'd throw up. She became unsteady on her feet, speech slurring, out of breath easy. Shes been fighting cancer for 15 years, metastatic breast cancer that went to her lung and months ago to her brain. She did a few chemo treatments, stopped to see if it helped. She got an infection in her port, had it removed and eventually put back in but all the while she kept getting worse. She couldn't walk more than 10 feet and her palliative dr told her not give up yet, she needed to regain strength by eating 🙄. I KNEW she was slowly dying. A month went by before her dr saw her again and finally said she needed hospice. That was over a week ago. So here is my sister finally in a bed at home, under 100 pounds, unable to eat or barely swallow, unable to sit up on her own. And hospice comes only twice a week. They finally prescribed her morphine in syringe form so we can squirt in her mouth. And they were shipping mouth swabs. Thank God for our sister in law who worked as a home health provider for many years and just retired. She does have some knowledge on what to do.
If I could I would have my mom back even on the most difficult days. She died at 98 in 2016. I promised her I would take care of the boys, my 3 older brothers, 2 of which have never been married and have no children. My middle brother age 78 has just been diagnosed with stage 4 metastatic cancer, unknown type of cancer at this point until bc completed. I am putting on a room in my house quickly in case he would choose to come here at any point. I definetly want him here with me.
I am very familiar and experienced with hospice protocol. My father was tested and the hospitalist said he was a swallow risk. They removed all food and drink. It made him miserable and when we got him on hospice he enjoyed his favorite Cokes and an In and Out cheeseburger ever day until he died. My advise? Get out of the hospital.
I used to argue with group home staff about forcing older clients to stay awake all day because they would get up at night. Now that i am older i wake up in the middle of the night
I know the thickener can go in soups, but is it ok in drinks of all ranges like milk, tea, coffee, etc? I never had experience with it, so all new to me. It's that versatile?
I wish I had found you before my precious mother died in Hospice care this past month. We (my sister, father and I) didn't know. Mom should have been in hospice care a good month or two before she passed but we did ALL of the wrong things. We demanded she eat, shower, move, get into her wheelchair, stay awake and up during the day (although she begged us to just sleep in bed all day). We thought we were doing the right things. I remember how petrified I was that if I didn't demand she live, she'd die. I never considered that I should let her die in grace and peace. I wish so badly I could go back two months ago and make very different decisions with how I talked to her and treated her. I will be haunted by that until the day I die. As for hospice care, It was like a wall of bricks to the head when we finally called a local hospice and got Mom set up at home in a hospital bed and began the caretaking. Thank God my aunt, Mom's sister, told use to call hospice care and not take Mom to the emergency room (where she would have died in a cold hospital bed). Fortunately, we had an angel (her name is Dana) for our hospice nurse. Her kindness, care, consideration, knowledge and empathy were everything to us - a lifeline that no one will appreciate until they are in our shoes. She told us what you explained in this video, all of it and more. My mother died at home after 2 days in hospice care and she died with us being her main caregivers. My last memories with her are of stroking her forehead, rubbing her chest, holding her hand, singing to her, telling her over and over that I loved her, that I'd be there for my sister and father. I know this will sound weird, but witnessing my mother die wasn't a horrific event. It was, however, jarring, traumatic, and emotionally so painful, but only because I was thrown into it last minute, completely unwilling to accept that Mom was in fact dying. This is why people like you and Dana are so, so critical. Families need this information desperately. Thank you for putting this information (and all of your videos) out for others to learn about end of life care. I'm now prepared to do the caregiving again. It will be just as emotionally painful but not jarring, not traumatic. I will be prepared. Bless you, Nurse Julie, you kind, lovely woman. We need more of you (and Dana).
Don't be too hard on yourself. I can tell you really loved your Mom. This might sound 'cheesey', but 'you only know what you know.'I'm sure your Mom felt the love that you had for her. ❤
Thank you for sharing that candid expression of how difficult it is to care for someone you love who is about to fall asleep in death. I learned something from your experience, and am very grateful.
@@That1EeveeFan2amen to that
This comment makes me so sad. Whewww. 😭 so many families don't understand the process or only take their own feelings into consideration and not the family member on their final stretch of this journey. They only think of their selfish needs and not wanting to help "contribute" in letting their loved one go. You guys thought you were doing the right thing (same as many, many others) and were trying to keep her longer! Don't beat yourselves up, she understands now and is hopefully pain free and watching over you! I don't know the exact circumstances and if she was in the hospital or not in the weeks leading up to her passing, but if she was I wish a social worker or someone would have explained what was going to be happening possibly so ya'll would have know what to expect and do for her. Forgive yourself as she fully forgives you and knows you were trying to help, she would not want you to beat yourself up for the rest of your life.
Dear Road Chicky peace and love to you and your family!
My mom watched her figure her whole life. We offered her a piece of cake when she was in Hospice. She wanted it but she was still worried about her weight. My sister told her it’s time to have your cake and eat it too. She laughed and then we all laughed. It was a wonderful moment. She sure enjoyed that big piece of carrot cake😊. She ate it all!
Good for her!! Nice little story!
@@beautyRest1 Awe thank you! I hope you have a blessed weekend.
❤❤❤
@@MegaSnakegirl ❤️❤️❤️
My skinny little mom became an ice cream fiend in her last two years. I was glad to see her enjoy it so much.
Ooh my gosh, my mom is on hospice and today was such a hard day for me she is bedridden with dementia and blind but the sweetest woman today we struggled with issues with dementia and I broke down crying she’s been bedridden over two years and I am sole caregiver my mom who is on hospice grabbed my hand and told me “you are doing a great job don’t beat yourself up, I am safe, I am comfortable and I am loved” I beat myself so much. I needed to hear that, your last comments thank you❤❤❤❤
Much love
You’re doing a great job. I know. I have been through this too. And you are loved too.
@@kimberlybamford1072 thank you 🙏
Prayers and hugs to you…I know how hard it is… you are a kind soul ❤
💔🙏❤️
I am so glad that I had found this channel. I never forced my son to eat. He just stopped eating the day after Christmas. I let him have his cigerettes and if he wanted a shot of some alcohol, I gave it to him.. The only thing he wouldn't do for me is shower. He would say he thought today would be a good day to shower, but not right now. Then by late afternoon it was too late. He would tease me with the shower thing many times. He never lost his sense of humor. Some days I think I didn't do a good job. But now I am glad I did what ever he needed and wanted. My niece and daughter gave him a bed bath and washed his hair and he looks so comfortable. He "slept" thur the whole bath. He died peacefully early the next morning. And I was able to remain sane only because you had told me what to expect. Thank you
Being a caregiver is isolating. People don’t really understand. They don’t care. They aren’t supportive.
@@schawnettarobinson8584 uuuumh very challenging I know the story i am one of them especially live in
I would suggest finding a support group for caregivers. It helps. I pray it gets better for you.
I completely agree, going through that now😢
My dad was a hospice patient and passed away today. Your videos were very helpful and comforting. Thank you.
Sorry for your loss. May God give you peace and comfort...
Sending you love and my wish for peace for you! So sorry for your loss! Thank you so much for being there for you dad! ❤🌹💐
Ich wünche Ihnen viel Kraft und alles Gute.
I’m praying for you.
@yaassss5531. I’m so sorry for your loss. My Dad also passed away recently (5.30.2024) and only had hospice less than 2 weeks. Hospice nurse Julie helped me be a more prepared caregiver. The hospice company we had was just ok. My Dad’s nurse had a difficult time figuring things out with my Dad. I followed my gut and it was more accurate than their years of training. That being said, it was the scariest and most traumatic experience of my life. I still feel like we failed our father. 😢. No more pain and suffering for him. I miss him terribly.
That last part struck a chord Julie. When Mom was on hospice, I was blaming myself for her being there. After Dad died, I was supposed to take care of her, and clearly I let her down.
I've dealt with that, but when the hospice sent out the social worker she was surprised. The other surprise I had for her was when she said "If this gets to be too much, we do have a hospice house." I told her "You will take me out in a body bag before I let you put her in a hospice house. I promised her she'd die at home, and so help me God, I'll do everything I can to make sure that happens."
You are right Julie, being a caregiver is a very hard job. I did it for both Mom and Dad, but leading up to hospice and finally hospice itself. I was holding both of their hands when their hearts stopped. I made sure both died in the home they loved, and had made into a home for over 60 years. There were nights of getting up at 3am because Mom wanted oatmeal at 3am. There were nights were Dad called out because he wasn't sure where he was (he was legally blind, so he couldn't see his surroundings well, and his mind wasn't working great, so he couldn't sense things the way he did before he went downhill). So many other things too. BUT, all that said, it is the hardest job you'll ever love. And, I take great comfort in keeping that promise...they did not die alone, and they died in the home they loved.
The one thing I would suggest to caregivers...ASK QUESTIONS. If you don't know something, ASK! Ask the hospice nurse. Ask the persons primary care doctor. Even if you think the question is stupid, ask it. That way you can give your loved one the best care that you can.
Beautifully put!
Bless your heart! What a lovely daughter they raised. 🌹
@@miapdx503 son. But thank you. And I like to think they raised me right, and I am a reflection of them and their values.
When I was doing my practicum as a nurse practitioner, there was a man in his 90s who was reported by nursing home staff having aggression. Looking at the time of the aggression, we figured there was probably something going on in his G.I. tract, and he did die of a G.I. bleed a few months later. His wife, obviously, given his age and dementia, did not want to pursue this. But I pulled in a behavioral psychologist who noted that most of the aggression was at meals because he was trying to steal other peoples desserts. He was a diabetic. We immediately pulled the dietary restrictions. People tend to focus on one problem and ignore the big picture. So thank you for pointing that out. It’s very important.
Parental caregiver here, and I am really hard on myself. Thank you for reminding me to give myself grace.
I took care of my husband thru hospice... my hospice nurse was so helpful in teaching me what I needed to do. Hardest thing I've ever done.
Julie, thank you for doing this channel. My husband is 69 and on hospice with cancer. Yes it is so very hard and watching him suffer from pain is the hardest thing. He has worked hard and taken such good care of me for 48 years and now it’s my turn to take care of him. Your channel has been there for me. With tears I want to say THANK YOU 😢
I wish you the strength you need! This has got to be the hardest thing to do. My husband had a brief illness before he died, but he was in the hospital. I don’t know if I would have been able to see him suffer. My heart truly goes out to you!!❤️💕💚
Don't force feed.
Offer them their favorite foods.
Don't force them to stay on a healthy diet.
Let them have what ever they want... icecream, beer, whiskey, pizza, chocolate.
Don't force them to get up. If they want to stay in bed and watch RUclips, let them. Unless they need to get up so that you can change their sheets.
Do not be hard on yourself.
Amen 100% I remember when my dad asked for a malt and I ran all over Detroit to find malt etc. Made it, he was able to eat a couple of tablespoons and said, "I am full" and I knew his time. Was getting near. Miss dad but so glad I did the work to make him his last malt! Katy
You can change the sheets with them in the bed. Ask a CNA to show you how to do it.
Thank you for all you do. Caregiving is extremely traumatic, and our society puts so much on family caregivers who aren't prepared for a job they never expected. Imho, expecting everyone to be able to do this is like expecting everyone to be able to deliver a baby. Not everyone can, and many of us who do will be traumatized. Unfortunately, some hospice companies don't do anything to help except show the caregiver how to administer medications. Home hospice is not for everyone. Caregiver PTSD is real but hardly anyone knows about that except for those who have been there. Thank you for understanding how overwhelming and traumatic caregiving is. Unfortunately there is no help available for many of us.
I’m going to need a lot of therapy after my dad passes. This has been traumatic. A very different experience from my sister’s passing. 😢
A@@Nurturing2
Do not feed a dying patient. THANK YOU for this. I have educated countless families on this topic! I encourage people to trust the patient and what their body is telling them!! Don't force like you said.
I worked in Healthcare for 30 years. One of the biggest mistake I saw caregivers do : insist that their loved one be given IV fluids, because their loved one refused fluids. Another mistake was the caregiver not taking advantage of the benefit of Respite care. It's important that caregiver's get time to recharge.
Our hospice offered respite, but it was at a hospital an hour away. My mother was totally bedridden and on oxygen 24/7. I had no way to get her there on my own and they didn't offer assistance. And I was told I had to take all 5 days of respite at once, I could not break them up as I needed them. If I took two days of respite, I would lose the other three. So I never took respite because it just didn't suit my needs. I didn't like the idea of my mother being back in a hospital anyway. She had already spent so much time in hospitals before that and I think it traumatized her.
I was caregiver for my dear mother who passed away end of February and totally agree that we shouldn't be so hard on ourselves...i am just now coming to terms with things after almost 4 months. It is truly the hardest thing to do to try and take care of a loved one ..trying to show them dignity and love during their last days...Thank you for your kindness to people..❤ God Bless..
Thank you, Julie for all those tips. I often do feel guilty, but sometimes I’m just so exhausted.
This is such god content. I work as a lowly safety sitter in the ER of a local hospital. Often my patients are younger and suffering from some mental health crisis or another, usually with anxiety or trauma being the underlying cause. But oftentimes I sit with older people who might be experiencing some form of dementia, or they might be in hospice care. Easy for me compared to the home carer. My patients come in. They leave after a few days (it’s an ER). My shifts begin and end. I get to walk away. It isn’t like that for people caring for relatives at home. Of all the things Nurse Julie has said in this video her third point stood out. If you are a home carer you are doing an impossible job, probabaly really well, and very likely feeling that you are failing. You are not. But I will share this…
Sometimes you just need to have your shift end too. The professionals do. You do too. And that’s where the wider community comes in. There are resources. Your community probabaly has more to offer that you realize and maybe not where you are expecting to find them. It might not be official or formal. It might be a well meaning neighbor or friend. And then… sometimes that’s exactly why I sit with my older patients. It just all got too much and someone needed a few days off. The carer came to us. We will generally admit the patient for observation for a few days, try to get everything back on track, provide that much needed break for the primary carer. And that gives us a chance to make sure the patient isn’t having any physical health issues that might be contributing. For example, unitary tract infections can be a catalyst for this situation because in older people they can result in dramatic changes in behavior, and if that is the case its good news because a few days of antibiotics and the infection is gone, the more recognizable personality returned. We can’t do that for everyone all the time. But if you have run out of anything to give, if you are in crisis, then its OK to call for that avenue of help.
Ours is a small hospital in a small town in Massachusetts. We know we are providing a community care service as well as the physical healthcare we are generally there to provide. And we also know that you are amazing.
What you do is VERY IMPORTANT .Do not ever consider yourself lowly worker. Each person has a role and is part of a team.❤🎉
I appreciate what you do! Please don’t say you’re a “lowly sitter.” My brother was in a bad accident at the age of 25 when a semi ran a red light and hit my brother’s pickup. Brother had a TBI as a result and during part of his recovery, he needed a “sitter” for his own safety. We appreciated whoever was sitting with him. So your role is very important! 😊 Thank you!
Julie, I can’t thank you enough for this video tonight. My dad just went into the hospital last night. He is now not even able to stand up and some days he is so weak he can’t feed himself. He has been sliding out of his chair at night and the paramedics or fire department have to come and lift him back in. I just can’t do it. He’s lost 35 lbs since January. Everything you are saying in this video is so right on point. My dad is terrified of going into a nursing home as my mom and his father died in the same one. I have become so depressed and overwhelmed, I don’t know who I am anymore. I feel like I have failed him and my own family. My dad has a way of making you feel like crap, and I try to let it go. I cry when I go to bed. I know he’s scared but it’s no excuse. Thank you for saying we are good enough as caregivers. I truly want to believe you lol. Thank you for all that you do ❤
Ps he has a collapsed lung and they don’t know if it’s mucus or food particles. He has pneumonia,hypoxia ,and acute respiratory failure. If he doesn’t do exercises to bring it up, they are going to go and suck it out. His 02 is 83-85 and I am so 😨 scared
Be strong. My father and mother died 7 months ago from cancer it was hard but you'll learn to cope
You will never regret caring for him. There is a lot of comfort from knowing that you did your best for him until the end. You are doing a wonderful thing, even when he is grumpy. Tell him straight, let him know gently if you need to that he is not being fair. ❤❤❤
Tell him...dad I love you and I am doing my best...I am always going to be here for you...forgive me if you think I am not doing the best I can...
Now
I know this is difficult but I understand exactly what you are going through...
In the end you are going to feel better...that you have done everything you can do for him...and that he knows how much you love him. How he reacts to it...
That's on him.
Take care my dear...one day at a time.
To be a caregiver is the hardest thing to do. Please, please take care of yourself too. Never blame yourself, you do the best you can ,that’s all you can do. It’s heartbreaking, I totally get it, but never feel you failed anyone. Just from what you wrote shows you are caring and worried and if you didn’t care, you wouldn’t have written those words. Remember what she said at the end” DONT BE HARD ON YOURSELF”. Take care, my heart goes out to you ❤️💚💕
I am 67 now and when I was in my 20s I took care of my Mom, and Grandparents before they passed on. No Julie I never forced food or drink. I always let them set the tone for the day. Right at the very last they had to be hospitalized. This was the early 1980s and Hospice care didn't exist in the Long Beach, California area. I do like the concept of Hospice care. I have researched enough to know it works and works very good.
Keep up the great work you're doing Julie.
My little brother lived with mom and cared for her. I didn’t realize how difficult it was for him until she had a hospital episode and while there he took his life. The what ifs began and until I found you they colored every area of my life. I was constantly thinking about how I could have done better. Those thoughts still come up at times but they don’t have the critical failure component to them. For that I thank you, the information is powerful at keeping me balanced.
I am so sorry for you loss.
I'm so,so sorry. We used to teach boys to "be tough" and make them feel lesser for asking for help..so many men take their lives without giving anyone a chance to see that they need help because of the social pressures, the awful, unjust messages that they heard most of their lives, messages that they need to be tough and just brute force through everything,no matter how hard , that "real men don't cry".
I hope you are sharing your brother's story, it may help save someone's life.
My husband and I did our best for my mom. She has vascular dementia and broke both hips, a year in-between. She couldn't walk after the 2nd surgery. But we were going to do whatever we could for her. We got her setup in a hospital bed in our house. We never forced anything on her. But the fact is this: she was bedridden and incontinent, and *I was too weak to roll her over to change her*. My husband would come home to help, but i needed 24/7 help. I cannot feel guilty forever for getting help in the form of a "home." The best in town, though. I won't let people, especially strangers, make me feel bad for this decision that we did not take lightly.
@@hikeeba44 please remember you are only one person. A home has numerous staff on duty 24/7. You did your absolute best sometimes our loved ones need nursing care.
I do understand your decision.My mom had diabetes, lewy body dementia and liver, heart disease. The dementia was something out of a horror movie. I along with one of my brothers and Dad who did not understand what was happening cared for her at home. I'm still traumatized. This was during COVID. No help was available. But hospice was there, My only sanity.
My dad got very agitated and insisted he get out of bed. We knew he wasn't strong enough to walk, as he'd already fallen once and my husband was the only one able to get him up and back in bed. I called the hospice nurse pleading for help. She told us to call the ambulance, as she lived 2 hours away, and there was nobody else to call. My dad ended up passing in the hospital 2 days later. Maybe I'm being selfish, but I feel some people cannot mentally handle end of life caretaking and should not be expected or obligated. The last 3 days of my dad's life was a never ending nightmare. Even whole at the hospital, when he'd become the least bit lucid, he'd fight and try to get out of bed. I've told my daughter and husband if/when I'm at the end of my life, please put me in a facility that is equipped to care for me, as I understand they may not be mentally able. The only thing I ask, is if they get a call, please do not let me pass alone. Unfortunately I found your channel right after he had passed. I could have prepared myself for so much more.
It is horrible isn't it,
My father’s short term memory is so bad he doesn’t remember he can’t hop up. He is in a nursing home. He is angry. I couldn’t take care of him even if I had all the money in the world.
‘’Poem 22: Love Notes to Soul’’ is a lovely book to read to yourself as a caregiver or to the loved one you are caring for. Words and presence are so healing. And that is why this book was written. I’m a caregiver for my mum. She’s advanced in her stages of cancer. And every moment with her in this journey is a gift. Love to all of those reading this and hear at this moment in space and time. And Julie, thank you for your wonderful videos. They are helping so many people. You’re truly living your purpose and that is a beautiful thing.
Putting knowledge to work in the right way leads to wisdom. Hospice administers wisdom during the process of dying. There are many wonderful doctors that have sensitive consciences and so they encourage the living to defy dying when there are no other options.
Our beloved doctors are taught to do no harm, to prolong life and maintain it. Julie, thank you for helping society to understand that the purpose of Hospice is to be a balm and lessen the sting of death, because death is an enemy to the eternity that was put in our hearts. Our bodies are designed in a remarkable way and is proof that we can live without dying someday but until then, may doctors learn to see the process of hospice, not as a defeat but as a companion of compassion to the dying process. I am so very proud of you young lady and when you’re on your first televised interview, as a shout out to your RUclips, posse, tug on your ear as Carol Burnett did for her grandmother at the end of every show. 🤭
New fan of your channel 👍🏻
It's given me a better understanding of the thing I fear the most DEATH ☠️
I hope someone like you is around when im on the doorstep,your a special breed of human 🙏🏻
*STOP BEATING YOURSELF UP!* We know when you truly care and don't expect perfection, just LOVE! 🙏😍
Every hospice company should put out videos like yours. I've just watched my brother in law pass from Alzimers and I should have taken time to rewatch some of your videos that I watched years ago when my mother passed.
I took care of my Mom during her last few weeks. I had very little support but would not trade the experience. One evening Mom said she wanted a Highball. I paused thinking of her meds....specifically the Ambien and Valium. She was adamant and I thought maybe it would help her sleep. So....1oz of Seagrams (yuck) and ginger ale. She nothing short of inhaled that drink. The pleasure on her face and her saying it was soo good. However, it did not help her sleep any better. The next night I asked if she wanted another Highball. So...glug glug glug went the Seagrams and glug went the ginger ale. It still didn't help her sleep, but the joy she felt....
I wish I had watched your videos when I was caring for my Mom. She had dementia and I know now that she was having some issues with aspirating. I had no support from her neurologist, even though they gave us a support person who never returned my calls. Hospice was helpful once I convinced them that she was ready for hospice. She died 2 days after hospice began at home. I expected more support and information from medical people. I won't make that mistake again.
Your last one made me cry. It’s not just my husband with multiple system atrophy, my co-grandma and friend (friendma?) was just diagnosed with metastatic (spinal) mucinoid adenocarcinoma. She was my support. I am being torn by mixed expectations. Too much bread, not enough butter…
Im grateful to have found you while I cared for my partner. It was hard. I wish his home hospice team had provided more support for us both.
My brother & I were caregivers for our 86 year old mother She passed in a hospice facility after 9 day's.Your vids were a godsend for me.She wasn"t ever a loving mother in my opinion.If it wasn"t for AA,ida been dead many years ago.Life is hard!(The Road less traveled"-)Give yourself a break(I don"t mean you, mean caregivers..Love you nurse Julie,I know,that" you get"what I"m saying.Hope your in a great relationship!You sure as hell,deserve it!
Good advices! Thank you. I am kind of lost but doing courses, reading and watching videos like yours to give my mum the best care in my home, and yes, its hard and I learning how to do things with less pain in MY back. Thank you darling!!!
I was blessed to have found you just before my beloved husband 's body began to shut down and my son and I were able to make my husband comfortable until he died. My only problem was that I didn't know how to turn him with his catheter in and I allowed the hospice nurse and aide to turn him and they were rough. Even with 1 ml of morphine every 2 hours already for a week, he screamed in pain and he died later that day. I ordered your book and packed it away with the other things I used to care for my husband so when it's my turn my sons will have it ready and not need to buy it. Thank you for sharing your experiences and explaining why and what to do.❤
Thank you, Julie, for your videos. I just wish I knew some of what you have been teaching us Before my father needed to live with us.
My father came to live with us after a small stroke left him no longer able to live by himself.
I knew he wanted to "go." He had just turned 90, he was no longer able to walk on his own, he was tired and I knew he was wanting to leave. So we explored the opportunity of "voluntary stopping eating and drinking". Online reading convinced us that refusing food and drink was Not suicide. So he tried it for a couple of days and thirst got the better of him, but at the same time he pretty much lost his appetite for any food, so he did die naturally anyway, however, it gave him comfort and the Power over his own life, that he Could refuse anymore sustenance in order to end his suffering on his terms. Miss you Dad. 😢
Thank you, Julie, for all the great advice for us caregivers. My husband is 54 and on hospice for terminal metastatic melanoma. If I had not found you, I wouldn’t be able to care for him as well I am! You are a wonderful communicator and teacher! May you be blessed beyond measure. Much love❤
Thank you! I am also a caregiver for my mom. I also was for my dad and understand exactly what you are saying! You dah best! Thank you Julie!
Hello 👋 appreciate for your video and I'm really need that video. Because i will start working as a caregiver job next week and this is the first time. I don't have any experience. I am so nervous 😢 😢😢😢😢 .
I am always watching all your videos and saving them.
Thanks 🙏 again.
❤thank you so much. My husband got a Dementia and right now everything you have mentioned is happening.
You are wonderful very helpful.
G.
I am a caregiver! Thank you so much for this advice!! I needed it today.
my husband was diagnosed with glioblastoma stage 4 brain cancer in January of 2024. he has been very difficult and angry, i am very sad i have lost my best friend. your video has helped me alot. you are fantastic.
Thank you Julie. I wish I had known about your channel when I was taking care of my parents at the end of. They were both on hospice at the same time and actually passed on within 5 days of each other. It’s a very lonely time and it’s a hard job. But I’m glad I was able to do it. Now my husband has dementia, 62 years old, but I’m learning a lot from you. Thanks again.
Peace to you, Kimberly.
First of all thank you for all the informations you give us. My dad died 2020 and I realized that I made so many things right. Your videos gave me such relive because I was not always sure that I did the right thing. I did not force him to eat or drink, I did not tube feeding, I did not insist on his medications and so on... some people said he needs fluids and he needs an IV. Something inside me did not want to do all that. Now I realise that this was the right decision. Thank you so much.
Thanks from Nigeria, I've really learnt a whole lot following you here and on Facebook.
You are God sent, and I hope to work on hospice one day
Listen to your loved one and honor their choices. ♥️❤️♥️
Thank you so much for sharing this information. I've been a caregiver for my daughter who has end stage liver disease.
I wish y’all had been around, 1998 - 2004. I had VERY little help, and a sister who would essentially “paint the walls” in my house (where our mom lived). I chatted with the oncologist because things were accelerating, and Hospice was activated. I had the job of telling Mom, and then sis stepped in and decided to cancel it to have one more round of chemo, and then left me with the mess. Hospice was an absolute God send…both times.
I don’t want to share details but thank you that has help prepare me and it is very much appreciated
Thank you for this. My brother and I are currently caring for our father who refuses to see a doctor. He has NEVER seen a doctor as far as we know. We know he is dying we just don't know exactly from what. So, no hospice nurse or doctors to call for help. It's just us trying to do the best we can to keep him comfortable with no real idea of what exactly is going on with him. I just keep searching the internet for info on his symptoms. It's the most helpless feeling I have ever felt.
Thank you, Julie. You always give the most important information. God bless you. ❤🙏🤗
On November 1st, my hubby told me he needed to go to the ER. He had felt odd for almost a year and several dr's said it wasn't serious and sent him home time and time, again. The evening of the 1st, he had x-rays which showed metastasized st. 4 Pancreatic cancer. He was set up on Hospice after both of us stayed at the hosp for 3 nights. He was given 3-6mos and since he was a pastor at the time, he was ready and left on Nov 15th. Luckily, for us, it was a short ride to the end. The main issue was he couldn't poop, for days. He finally did and tried to get off the toilet and couldn't even with me trying to help. He slid down and was on the floor and passed.
I just wanted to say thank you Julie, you answered some of my questions in other videos about those who pass away from renal failure. My husband had kidney disease and due to another medical problem that he developed 14 years prior, he couldn't do dialysis. He passed away today June 9, 2024. He was 61 years young, but had many health problems. I already miss him dearly ... it has been a whirlwind of emotions today, and tomorrow we deal with the funeral home...
Before he passed away, we listened to some music, one of the songs was the one we played at our wedding "I will be there" by Steven Curtis Chapman, our 25th wedding anniversary is June 12th, 3 days away. We listened to Amazing Grace by Peter Hollins and Home Free, it was one of his favorites, and said he wanted it played at his funeral, I wanted him to hear it and other songs one last time. We shared family memories with his nurse, had some laughs about the fun we had as a family as we watched and listened to him take his last breath... he will truly be missed! On the way home, I turned on the radio to hear one of his favorite songs... "Every breath you take... I will be watching you" by the band The Police, perhaps it was his way of saying he will be watching over me... and our family.
To those of you reading this... remember that tomorrow is never promised, for the old or the young! Spend time with those you love... put down your phones, your games, and any differences you may have or had, life is too precious to be distracted by THINGS that really don't matter!! Share some love today with someone who misses you, but you will miss once they are gone and you wished you had made more time for them! Spread some love... isn't that what our world truly needs right now?!! ❤❤❤
From my own asperation experience, do be careful! And I am not looking forward to those thickening things! Thank you Julie!
I am so glad I found your channel. Thank you Julie!
Dear Julie!
Thank you SO MUCH FOR YOUR ADVICE. Our father passed last night, peacefully. It was comforting to hear what to expect and also what to do. 😊 Such a blessing!
Thank you for your videos. They are so helpful for making things easier to understand what people are going thru.
An amazing list of do's and dont's. Thank you!
We didn’t know my Mom was sent home to die. The doctors never said anything about it. We were told her medications were going to change because they had better meds for diabetes. We tried feeding her cause we thought she was going to get better. I wish we would’ve known better
I am an 80 year old man with heart failure on in-home hospice with twice a week visits by RN. My Caregiver is former CNA wife of 58 years who is, you guessed it, also 80. Do you have a video on do's and don'ts of being the patient?
Hey there♥️ Just my humble thoughts and opinions here but… start out by being yourself. Be honest with your partner about how you are feeling- even if it’s something that is difficult for you to say. You’ve been together for a long time and your partner deserves to hear from you about how you’re TRULY feeling- even IF it’s not great. This applies with speaking with your Dr’s too. If you’re feeling depressed they need to know. There IS help out there and support for you AND your partner. And there may be things you might not be able to speak with her about just yet or maybe even ever. But you may need SOMEONE to talk with about it- and professional, confidential support IS out there!!!
Be kind to yourself!!! You’re going through something major!! And it’s NOT easy!! Mentally, physically, emotionally or spiritually!!! You can’t right all the perceived wrongs you’ve done in your past. You can’t make amends for everything you’ve think you’re done wrong. And you’ll make yourself crazy trying to think of ways to fix it and do just that!!! If you ARE spiritual you’ll know what to do. If not then you can try to reach out to people who you wish to reach out to and do what you can- in sincerity WITHOUT mentioning your illness. It’s about your righting a wrong for the right reason- NOT because your time here is limited. It’s about fixing hearts and relationships period. If they aren’t interested or reject this olive branch. That’s ok. You’ve done your best for the right reasons.
About being a good patient? Just be a good person. When you’re sick, nurses understand you’re not always going to be all happy-go-lucky and cheerful!! Just be yourself hun.
And if you’re at home, just be yourself there too.
Don’t worry so much about what others think!! Just focus on you and your wife and family!!!! Do things that make you both feel happy!!! That creates memories together!!!
Not sure if this is what you were looking for 🤷🏻♀️ but I hope it helps!!!♥️🙏🏻♥️
Sending you my sincerest best wishes to you and your wife and family!!!
Michelle~
Retired Psychogeriatric Nurse
Just want to remind you about the most most important decision we need to make before we die, and that is to receive Jesus as our Lord and Savior. I just wanted to let you know a little about what the bible says. It takes more than just believing in God. John 3:3 says, we must be Born Again to get to heaven before our time is up.. Everyone has sinned and fallen short of God's glorious standard, and all need to be made right with God by his grace, which is a free gift. We need to be made free from sin through Jesus Christ. Bible also says, its not by works should any one boast. So being a good person does not get you to heaven either. The only way to heaven is by repenting of your sins, which means a change of mind, and putting your faith and trust in Jesus. Romans 10:13 says, Whosoever shall call upon the name of the Lord shall be saved. So you see, there is a need for salvation to get to heaven. That is why Jesus died on the cross. He took all of our sins upon him, so that if you accept Him as your Lord and Savior, you can have eternal life in paradise. You do not get there being a good person, or doing good deeds. Many people believe that is all it takes. Jesus also says, that I am the way, the Truth, and the Life, no one comes unto the father, except through me. So please make that decision, so that you can have peace and comfort before your time is up. Its the most important decision of your life. You can then have that peace and assurance of salvation in your heart. All you have to do is humble your heart and pray with faith,... "I repent of my sins, and I turn to You. You said in Your word that if we confess with our mouth the Lord Jesus, and believe in our hearts that God raised Him from the dead, we shall be saved. I ask You Jesus to forgive me of all my sins, come into my heart, and take control of my life. From this day forward I want to live for you. ..... It's not about the words, it's about your heart. The Lord will then send His Holy Spirit to live on the inside of you. The Holy Spirit is Gods seal of salvation, and your evidence you have been Born Again. He will transform your heart and mind. He will bring you into a personal relationship with Jesus. You will become a new person inside. 2 Corinthians 5:17 says: “Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new”. Its truly amazing! You will be filled with peace, love, and joy of the Lord inside you. All the fruits of the Holy Spirit. He will comfort you in your time of need, and give you the strength to endure. No matter what you are going through, Jesus wants to help you through it. You can lean on Him. Its the most important decision of anyone's life. God's Word says that we are saved by grace through faith in Christ Jesus and not by our own efforts or works (Ephesians 2:8-9). Grace Alone. Jesus is the only way to heaven. Please believe me, its all in the bible. Its the Word of God..I am not judging or condemning anyone, just letting you know there is much more if you put your trust in Him. Jesus cares for you, and does not wish for you to be separated from him. Please don't wait. Today is the day of salvation. He loves you, and does wish for anyone to be apart from Him, but to have eternal life in heaven. I'm praying for you. Please ask Jesus to come into your life today, my friend, You are special to Jesus. Romans 10:9-10. "If thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved. Be blessed
Julie, you are an angel. You are sharing important information for everyone. I hope you are aware of how valuable you are. ❤
Wow, truly informative information! I wish I had known about this channel 7 yrs ago! I made some of the mistakes you mentioned in this video 😢
I plan to have my kids watch it so that they don't repeat my errors.
Thank you Julie 🥰
My father died in the hospital back in 2008. A nurse very forcefully and violently made him take a handful a pills with water. He hadn't been conscious in a week. I was young and dumb and had no idea it wasnt right. But subconsciously I must have. I always go back to that moment and all the regret i have for the things i didn't do because i was afraid and just so beat down from the long process of death. Im coming up to another caretaking time in life. I hope i can be better
Your videos are always well thought out and helpful. I appreciate them.
You are the best. Thank you for sharing your compassionate knowledge.
Hi Julie..hope you have a great day..thank you for all you do❤❤❤❤❤❤❤❤❤❤❤❤
Thanks!
Thank you!
Julie ...awesome vlog! I'm a caregiver for my wife. So appreciate your advice❤ sooo helpful
My husband is about to pass and I asked him today how can I make things better he said he doesn't want to leave me but he wants me to let him go because he knew I'm not ready I told him I'll be OK the pain is ripping my heart out
Thanks Julie😊
Julie THanks so much for all this education. I really live ur videos that let us know it’s ok to let go and die. Do not be afraid. Thank you for explaining that in other videos. I think the caregiver is afraid not the patient. If that makes sense. Tfs.
Love your work 👍
Our issue is she has been bed bound almost a month with no walking and suddenly now expressing a desire for a shower.Says she must get up soon and exercise.At this point ,she is down to a skeletal state,no muscle mass and is probably under 100 pounds. I am terrified to get her out of bed( dementia ,latter stages)…-and keep redirecting.So worried about falls.
Hi Julie! I wish you were around when I took care of my parents although listening to you, I did a good job.
Thank you for sharing your knowledge ❤️🕊️
Your videos are so informative and helpful. I real enjoy the way that you present things.❤🙏
Thank you because I am a caregiver My husband feels I should push food. I do
Not. I offer and yes some
Days she eats well
Some days no I’ve been in the position before with my parents. My husband has not
I love listening to you, thanks! 😁👍
Thanks for your videos. They have helped understand what is happening with my 91 yo aunt who has dementia. On a separate note, her 14 yo cat has feline dementia so I've got the 2 of them, lol.
Sometimes its frustrating when the person you're trying to take care of just doesn't do anything to help themselves. I know they are the patient, but I think patients need to be reminded how the decisions they make impact the caregivers.
God bless you . Thank you .
My grandfather died at 80 in the early 1960s and laughed when told he couldn't smoke or eat bacon. He pointed out he'd be dead soon from coal induced emphysema.
I did this with my dad once and he aspirated. He passed only a few days later (in 2021) and I STILL feel guilty.
I’m a caregiver for my husband who has dementia & doesn’t want to eat anything. He will try to drink juices, but doesn’t usually succeed. What to do?
Try soft foods, i.e. pureed. Do you have a blender or food processor? Take his favorite food, say . . BBQ chicken, or whatever, and puree it. After blending, add warm water if it needs to be creamier, and blend again. Try spooning a half teaspoon at a time. His liquids may need to be thickened. There is a product that you add to liquids that makes it thicker and slower going down. Demented people will refuse food and drink if they know they will choke.
I have always had interest in Hospice nursing.
Thank you so very much for all your information. I have learned a lot.
My mother at 97 years, 320 days, was resuscitated by the EMTs, despite a DNR order. The EMTs demanded to see the original, instead of the copy the board-and-care manager showed them. The original was stored in his file cabinet somewhere. She died in the hospital, never regaining consciousness. Her death was not perfect, but her life wasn't perfect either, so why would her death be different?
Thank you for all you have learned me I was with my aunt when she past 2 weecks ago ❤
YOU ARE doing a good job! Thank you!
I'm so aggravated that my sister's palliative team didn't call in hospice sooner. She started getting where she wouldn't eat 5 months ago. Every time she did she'd throw up. She became unsteady on her feet, speech slurring, out of breath easy. Shes been fighting cancer for 15 years, metastatic breast cancer that went to her lung and months ago to her brain. She did a few chemo treatments, stopped to see if it helped. She got an infection in her port, had it removed and eventually put back in but all the while she kept getting worse. She couldn't walk more than 10 feet and her palliative dr told her not give up yet, she needed to regain strength by eating 🙄. I KNEW she was slowly dying. A month went by before her dr saw her again and finally said she needed hospice. That was over a week ago. So here is my sister finally in a bed at home, under 100 pounds, unable to eat or barely swallow, unable to sit up on her own. And hospice comes only twice a week. They finally prescribed her morphine in syringe form so we can squirt in her mouth. And they were shipping mouth swabs. Thank God for our sister in law who worked as a home health provider for many years and just retired. She does have some knowledge on what to do.
@TiredEmpath my sister couldn't swallow so it was placed in the side of her mouth way in the back.
You were very good on Howie Mandel's show.
If I could I would have my mom back even on the most difficult days. She died at 98 in 2016. I promised her I would take care of the boys, my 3 older brothers, 2 of which have never been married and have no children. My middle brother age 78 has just been diagnosed with stage 4 metastatic cancer, unknown type of cancer at this point until bc completed. I am putting on a room in my house quickly in case he would choose to come here at any point. I definetly want him here with me.
You are awesome Julie
I am very familiar and experienced with hospice protocol. My father was tested and the hospitalist said he was a swallow risk. They removed all food and drink. It made him miserable and when we got him on hospice he enjoyed his favorite Cokes and an In and Out cheeseburger ever day until he died. My advise? Get out of the hospital.
You are so kind. What inspired you to become a nurse?
❤️ Thank you.
I used to argue with group home staff about forcing older clients to stay awake all day because they would get up at night. Now that i am older i wake up in the middle of the night
That's so helpful 🎉
Julie, what personality would be good to be a death doula? And what personality should definitely not? Thank you for everything.
I want a death doula. I'm sort of new to Julie's channel & wondered if she speaks of them in other videos or in her book.
I know the thickener can go in soups, but is it ok in drinks of all ranges like milk, tea, coffee, etc? I never had experience with it, so all new to me. It's that versatile?