Dementia and Caregiver Burnout
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- Опубликовано: 17 янв 2022
- Dementia and Caregiver Burnout: The cold, hard truth from someone who's lived it. A look at what's contributing to it and how to handle it. Self-care? Ya....right.....Let's get real.
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You are so honest. I love that you speak plainly. People should view it like having a toddler. Eg: you wouldn’t leave a toddler alone in the house to “self care” and go for a walk
Very helpful video. I am caring for my husband who does not want to be with (or see) anyone but me. It is very wearing especially since his moods are very changeable. I think that we are in stage 5 but are very close to stage 6. It's very useful to listen to someone who knows exactly what it's like. Many thanks
I am now in the same boat. I have been told that the co-dependency gets worse as the disease progresses and that now is the best time to move him to assisted living so he can make connections with others before he gets too far into the disease. He is absolutely not buying in to moving to assisted living. I know it’s been a year since you wrote this, I am wondering what you did and how it all worked out for you.
Hi. I was taking care of my husband for a few years. Last week I moved it into Memory Care. He is well into stage 5 but not quite to 6. My husband also didn't want anyone but me and treated everyone else horrendously so no one else could take care of me. My husband is distraught now and wants to come home. It is still hard!! but at least I am getting sleep.
My wife has FTD and her twin sister died of it December 2022. I am really struggling with the rapid decline in her behaviour. She is so dependant on me and unpredictable that I cannot go out without her and when we are out she dominates what we do and the time schedules to go out and come back. I am finding that really oppressive and making me have angry conversations with her which I know in my heart I should not do. Its really hard.
No end in sight and guilt cause you wish it was over.
Yup. That's how it feels somedays.
Exactly how it feels
So well said!! Caregiving isn’t fun, thank you for telling it like it is.
I agree with everything you have shared, my problem is with people that know nothing about dementia and try to tell you to have patience especially someone who is in the medical field!
Thank you for your information it really helps alot 🙏
I'm guessing those that tell you to have patience have never dealt with this disease in a daily, hands-on way. I once had a doctor tell me it was a privilege to do this type of care, and he and his wife were doing it for a grandparent who lived with them. I talked to the office staff, who chuckled and told me they had caregivers in the house...
In my opinion, I think all medical staff regardless of the profession should be trained & refreshed in all aspects of illnesses once a year because every year new technology and breakthroughs come about ...
As long as it's headed by independent drs, not pharmakia
I so appreciate your take on things. I'm in Canada and there are differences between the systems here and in the U.S. but the core message is the same - know and respect your limits because nobody else is going to do that for you. Thank you for your straight talk :)
You are spot on. I was a caregiver for my 97 year old father. My sibling lived 600 miles away and had no clue how difficult it was for me. She couldn’t even imagine...never even tried, or visited him. However, she showed up for the inheritance process.
Amazing how they can't make it to visit, but when the will is read they seem to clear their schedule.
I’ve just binge watched your channel. It is great!! I think exactly the same as you do on every aspect of this horrible disease. From family members to death, I completely agree with you.
I feel like you are a life saver. Thanks for being real and sharing hard stuff. Sometimes you can have guilt or believe others who aren't even willing to help. They can make you dought yourself. Thanks for helping me not feel alone and understanding better. !!!!!!!
Glad it helps!
I’m every adjective you used! I’ve been caring for mom alone for 5 1/2 years, am physically, mentally and emotionally exhausted. I haven’t had a single day to myself in over 5 years and breaks…hmmm, nonexistent. It’s like caring for a toddler, you can’t just leave, go for a walk, get groceries alone, etc. The medical field gives very little information and the frustration is so real. Have watched all of your videos and you get it! I have three siblings who refuse to help, say they’re going to live their lives….am I not entitled to have a life too? Always opinions and advice but that’s it so the resentment is as bad as caring for the loved one
I can totally relate! Can you call your local Area Agency on Aging to see if you can sign up for the respite care program for caregivers? You may at least get one day of care for your loved one (either in your home or an adult day care facility), and that can give you some time for yourself. Or if your LO was a veteran, there is an “aides & attendants” benefit available through the Veterans Services Commission.
@@Bubblegumswitch We have a Memory Care Facility in our area that does respite for up to a month.
It is really hard. That's why we put our loved ones into assisted living - but it was still quite a while before they moved and exhausting in the meantime.
@@lifeunderdeborahspalm-thed8114 yes, same here, 14-18 month wait
@@lifeunderdeborahspalm-thed8114 14-18 month wait here
This is excellent, real talk with real situations. It’s true….saying no is part of self care.
I care for my 82-year-old father with mid to late-stage Alzheimers. Haft's siblings, who do not help but have lots of "good" ideas, put more stress on me than my father. I am learning to say NO to them. This video was great; I needed to hear it. Thanks for sharing. Again, Thank you!
Most people who don't see day-to-day living have great ideas until they have to spend half a day with their loved one and find out the state they are in. My bro lives out of town, and he thought he understood it until we went on vacation, and then he realized how bad our mom really was.
@@lifeunderdeborahspalm-thed8114 ☺
Going through the same caring for my 85 year old mom, stage 6, three siblings who refuse to help and add more stress than caring for mom.
@@debby891 Sadly, that's what happens.
Add Covid to the mix of all this plus add taking care of my mothers property, all bills, taxes, medical and try to keep my job makes my life just dandy and I try to just breathe to get over the stress! For the last four years my husband has not been too happy with my dedication to care for my mom and I get that! I give people credit that do this because it’s not an easy life! I appreciate this video and it makes me feel that I am not alone in this journey
Im a caregiver and i get super burned out. Its alot and you never know what gonna happen.
Sadly, it goes from occasionally being overwhelmed to continually overwhelmed as the disease progresses. I didn't get out from under it until my mom went into assisted living.
My mom would be up all night tearing the house apart...by morning i was exhausted! But still had to take cate of her during the day.i thought I'd die!
I know someone who went through that - their loved ones had their days and nights backwards. It was hard.
Your video is spot on, real time and I listen to it as a daily reminder, thank you! I have been a caregiver to my mom suffering advanced stage dementia now, 10 years to date, flying solo, no help, no other family members. I was searching for realness in caregiver burnout and your video has provided me relief! Grateful of your time to create this video and being able to state the plain facts and reality of this very long painful journey. Thank you from heart ❤🙏
We dealt with the disease for a total of ten years, but none of them lived with us. I can't imagine how difficult it is for you.
I left work to care for my parents and also fell off my chair with your comment about house extension cause I did that, yup one room extension at back of my house! Grueling endless journey almost coming to close but lucky my soul has dedicated me as a caregiver from hand feedings to diaper changes. Living through these challenges have given me internal strength however your video is daily confirmation to hold tight! Thanks again as you have helped me and many others facing this life altering disease DEMENTIA. Stating the plain facts, no sugar coating was something I was searching for and found in your video, brilliant! Thanks again for sharing! 👍⭐🙏
The pressure! Yes.
It's true, and not everyone is up for it.
@@lifeunderdeborahspalm-thed8114 My situation is not identical to yours. My spouse has Parkinson's and essentially, the caregiving situation has just evolved. But many things you describe are in parallel. Folks may think it is all well and good for one person to take on this task, but it is obvious no one will step up to help take times and there is judgement about when assisted living is the better decision for all involved.
I’m glad I found you. My 89 yr old mom is in stage 5-6 mostly 6 I think. Thanks for the help and information. I really appreciate it.
Glad it was helpful!
1 day in, and I feel like I did at the first day of Army Basic Training. Before this, I came over for a few hours every day for two years but now she need constant supervision.
No time to do anything but care for Mom. Bathroom is too small for a transfer board so I am the only one who can lift her so I am going to be stuck here 24/7.
My moving in will not make her better but it will allow me to believe that I did all I could. It will help my self esteem. I have been successful at business, family, organizations but I need to do something for someone without an anticipated benefit.
The world is scarey for her and my Dad passed as have almost all of her friends. I need to make her feel safe, loved and cared for. When she dies I want her to know her son loved her and was always there for her.
I don't if I can make the long haul but I will do my best.
Deb I have been following you and you have helped me understand alot of things about Dementia. I have been going through the same thing with my mom alone. Have 3 siblings that havent ever helped out but dont talk to me because it. She has been living with me after my dad passed. Diagnosed with dementia 4 years ago. You are exactly right in everything you have said. I have a caregiver come in during the day while I work. I have had no life since taking care of her. But I couldnt abandon her like my siblings have. I am the only one that works and have time to give to my mom. But the all have comments on how I should be taking care of her. Thats why I cut all ties with them. I have considered putting her into a home but have guilt to do that. I just week have Hospice care come in and help. She has had 2 heart attacks this year and her doctors recommended it. She is very frail and I feel very bad seeing her in that condition. Thank you for all the insight.
It's hard and it sounds like with her other medical issues that she may not be a good fit for assisted living. Hang in there!
@@lifeunderdeborahspalm-thed8114 sad to say my mom took a turn for the worse in the past wek and passed away yesterday. She was at peace and home with family at her side. It is the hardest thing I have had to go through in my life but thankful to have spent the last 7 years taking care of her. She is the best mom a son could ask for and wouldn't have changed a thing. She never asked or wanted anything. My life will never be the same without her. Thank you for all the videos on this disease. It sure has helped me understand that I'm not the only one in this situation. You have to live it to understand it. My heart goes out to anyone that is in this situation.
@@drodman34 Sorry to hear about your mom. At least you can say that you have no regrets and cared for her at her worst. I wish you the best.
I have some of your issues as well! I would feel guilty to put my mom in a home! I believe you will have your reward when you pass. You sacrificed to help your mom when she needs you the most! People like you are few and I know how hard this is. You are a quality person, hold your head high for the love you show to your mother. I’m closing in on my 4 th year of taking care of my mother as well. I know I won’t be able to do this forever but we do this because of love and honor! You are not alone!
I can totally relate, I didn’t see myself burning out, I was on survival mode with mom, my husband put his foot down and we then put her in a home. It was hard but I realized that I was running into a wall and when she left, I got back my life. I was slowly coming back to the person I was before…I had time for my family and me and mom is being well taken care of. Something I alone as a caregiver was not being able to do.
I agree. It also allowed me to enjoy my mother. I took her for ice cream, and family dinners, etc. and had a ton of patience for her where before, it was very stressful.
Great video. I’ve started process of moving sister to memory care and I’ve been feeling some resistance. This is a great reminder of all the things I’ve been going through. Thank you
You are spot on!
Excellent care taker video. Very real situations used as examples. One of my favorite parts, “it’s THEIR money” to be used for THEM not for you.
Great advice thanks
You say it exactly as it is. I haven't been for a walk in months as it is getting harder to leave mum with dad as she doesn't always recognize him and doesn't want him in her house. But I am still not going to put her in a home at this stage. I am still holding up well but I have noticed subtle changes that she is becoming more agitated for longer periods.
There are meds that can take the edge off the agitation. My mom has a difficult time with medicine in general, but the PA did find a low does of one that has helped.
Just awesome! Thank you!! Especially the help with pills!! Your videos are my salvation right now.
This is the absolute best, most honest and complete piece I’ve seen on this-especially the part about pressure from others, who won’t do what they’ll tell you to do. It CAN last for 20 years, and most longterm caregivers develop related health issues.
My husband is now a late-stage Alzheimer’s patient in a facility
We have a relative that did caretaking for at least 20 years (not for dementia) and after the person passed, she realized the toll it took on her and her health.
Reliable, credible sources say that 40-60 percent of full-time caregivers develop serious health issues because of caregiving work and stress. The variations come from how they define “serious” and how precisely they correlate the caregiver’s problems to the work. Either way, it’s a lot.
My own doctors finally told me pretty bluntly that my husband is near the end of a fatal disease that has no cure.
I developed some problems, but they said I could still have years of life ahead IF I made some big caregiving changes. Otherwise….not so much.
Loved, i appreciate your sharing
You are so welcome
Thanks for the vid. It’s really helpful.
Glad it was helpful!
Finally found someone with solid and helpful tips and information. Thank you so much for your videos. I suddenly feel more empowered in my situation. 18:12
Glad it was helpful!
You must have read my mind today. I cannot find time to do self-care.
My hubby has minimal cognitive impairment. It’s more physical in his ambulatory navigation. He has lost some of his executive function, is deaf and unsteady with balance. At age 91 he does fairly well. But family enters in and wants to provide input but they are not the caregiver. Often that sends me into a tailspin trying to meet everyone’s needs. I’m 78. At least young enough to provide care. My hubby and I share a unique and deep love to this day. He’s easy to care for and feed as well. For the most part I just find myself exhausted beyond belief taking care of all the details of life and trying to fit in any kind of self-care. I still work part time which I enjoy. He’s not needy of me for a few hours a couple days a week. Any advice or help would be sincerely appreciated
When family provided input to us (that was unwanted) we told them it was a good idea and to let us know when THEY were going to do it. That stopped it pretty quickly. If it was stupid advice - and we got a lot - we agreed with them and completely ignored their ideas.
Self care when you’re alone is a killer. I’m at the point where I’ve got to hire help though out of pocket and so costly but it will save my life. Eventually my sweet husband will eventually go into memory care. I’m pre planning now as I’m way past burn out to near collapse.
Sorry to hear that and others don't understand how bad it is.
Or take them with you and everything takes extra long to accomplish
My bro lives in another state so he really didn't think Mom was as bad as I said...then he took her to the grocery store. Welcome to my world!
Yes! Everything take 2 to 3 times longer than doing by yourself.
My husband wants to do everything with me, I can’t have anything of my own to do anymore. It is suffocating.
Don't buy Brandon ice cream 🍦🍦🍦🍦🍦🍦 buy him tea from Boston instead
There are 6 of us adult kids and my younger brother and I are doing most everything for my mom who has dementia for about 4 years now, since 2020 right as covid hit (our father died in 2003). Or should I say i'm doing a lot for my mom and when I complain that I am doing more than them, they are like "You know, mom dd a lot for you over the years." I have a disability and she did do a lot for me but then again, she did a lot for everyone not just me. It gets sooo tiring.
I think a lot of sibling bitterness comes out when caretaking. Even if they've never said anything before, jealousy etc. from childhood becomes an issue.
What to do if PWD/LO/parent is beyond an ALF (can't walk, etc.) and screams/curses at everyone, wants to go home, accuses everyone of rape/kidnapping/etc.?
You would have to check into it, but I think if they are unable to walk they have to go into a nursing home.
@@lifeunderdeborahspalm-thed8114 Thanks for responding. Sorry, I'm at wit's end. We just found a residential ALF that seems to be a good fit.
Definitely like your view on the situation, plain because it is realistic. I am the only child and every problem my mom has is on me to deal with. I deal with situation only for one year. My health has declined. And the problem is that my mom DGAFs. She really DGAFs. And it really eats me. If I thought that it is just because of dementia, it would be easier. I have resentments. I have HUGE resentments because she expects more of me than she ever gave me. She expected me to give-up my job and to move-in with her and take care of her full-time. And she is not yet at the stage, where she is completely lost and can't deal. I have so much resentments.
That is hard. We dealt with a demanding parent as well but we refused their wishes. It just wasn't feasible for us.
I have an older brother that used to torment and beat up on me the whole time I was growing up. I would cry to my mom and she would tell me to go away, leave her alone. She didn’t care. Guess what? When he was married she had property that he wanted her to sign over to her. She wouldn’t and her golden boy disappeared. I have resentment about that though I’m lucky my adult son and my sister help out.
Thank you for such informative video and your honesty , i had a friend who's a caregiver of her mother with dementia, she has a couple of nurses to help her since she has a day job and cant take care of her mother during such times, as she requires around the clock care since she's immobile and i think its one of the late stages,but she was trying her best , the thing is i have tried to help her by being the supportive friend as she doesnt have many, and she wasnt involved in any support groups , and she has been mentally scattered if i may say? she's all over the place, and she was telling me how lonely she is, i kept reminding her of God and offered my help whenever she needs it, tried to go out with her and make her laugh, however. she ended our friendship recently by saying that she wants to be alone and her mother is more important and she likes it this way. so i was wondering about your experience Deborah, did you feel like rejecting friends during your time as a caregiver?
Thank you
Our friends were fine. Our families were sometimes another story.
@@lifeunderdeborahspalm-thed8114 i understand, as i wanted to ask someone who has been through caregiving stages , it was very confusing to me that she just ended our friendship even though i was as supportive and giving and did not put any pressure on her. her family history is toxic though so she cut ties with alot of them
@@deltal5846 Don't take it personally with your friend. If you can, try to remain open, if they reach out to you.
I have dropped a few of my very good friends. It is difficult. It is like I am definitely not the same like I was before all this situation with my mom started. I am down, I am exhausted and I barely remain functional. It is like I have zero band width to have a normal social interaction. Last time I had a coffee with my friends, I was in my head just not there. And it feels like it is no fun for me and rather a burden for my friends.
Yeah, I dont feel like a daughter anymore. I have a sister.shes no help. I really appreciate you.
I hear you. You end up going through the routine and not enjoining any time with them.
How can I best help the caregiver?
People just dump them in old folks home because tht is interpreted that person life
You are so real and your messages are spot-on and relevant. Thank you for all you have done for those who are caregiving or will be in the future. 🪷
Thank you so much!