If she could keep one, Heather’s diary would read, “Another great day with my guy, where I am clean, safe, and happy. He is the best.” We’re at the point where we have to let all of the unspoken words matter - feel them on the inside and know that we are still loved. ❤
My mom came home from the mall with a stranger and said her car was stolen. Two weeks later, the police finally contacted my dad about his car being in the lot for some time. That was the end of her driving. My dad did an excellent job taking care of her.
Hi John , I am in England , and have worked with people who had dementia . You are doing a wonderful job , not only with Heather but sharing such valuable information to help many people on a similar journey... much love and respect x
I am in Denmark, and we refer to dementia as an illness that mostly hurts the loved ones of the patient. Your story seems to be an example of that. By the you realized that something was wrong her brain was already so impacted by the illness that her emotional reactions were flattening. Thank you for sharing. We all need to be more aware of dementia in aging population. Best thoughts from Odense, Denmark.
@@Junichild They say if you have dementia in your family you have 50 % chance of getting it as well. You can get a test to see if you carry the gene and then take necessary precautions accordingly.
My dad is now 85 and I started noticing something was “off” around the time of the big 80th birthday my mom was throwing for him. His eyes looked …. A little “spaced out.” Then, i remembered how he had paid every bill and done the annual taxes my parents entire marriage. 60 years. But, one year, he just didn’t do the taxes. No explanation. So, my mom rushed to figure it all out and was dumbfounded as to what was going on. This man had run a company for 60 years. Then, he started asking who the next door neighbor was; how to operate his ‘cell phone’ (it was a cordless house phone 🥺), etc. Now, he pretty much is just ‘there’ but he’s still my dad ❤. I did have a big cry last night when no one was around. I deeply miss his personality, sense of humor, his insight, his advice. It’s devastating. And, I know my mom deeply hurts & misses her best friend. 🥺🙏🏻 prayers to you and everyone suffering from dementia.
I am sure that you have far more great memories of your father and I hope you can dwell on those good memories other than how he is spending his last year's. This is probably easier to do once he is finally at peace. My FIL had alzheimer's but he was lucky, his hand was taken from a heart attack, yes we consider him lucky. His family members lived for years with this disease but Art lived with it for 5 years after diagnosis. Absolutely devastating worthless disease along with many other diseases. I wish you well on your journey and your father's.
We should all be so lucky to have someone like John taking care of us. You're a remarkable person who has been given a big caregiving task. Sending supportive and peaceful thoughts your way!
Even though Heather can't reciprocate your affection, if you need to hold her hand or feel her hug, do that. It's important for your well being to still feel connected to your spouse. You are doing such a great job of staying upbeat and keeping her safe and happy. ❤
John that was very emotional and a trip down memory lane for some of us. Clean, safe and happy is the essence of great care. You sir are doing an outstanding job and clearly Heather is your world. Take care and we your subscribers are right here. God bless from Lincolnshire England.
Thank you so much for sharing your journal John. Your level of acceptance and engagement is reflected in Heather’s level of contentment. Your videos are a gift to the community.
This is such an important video to make. My oldest Aunt was diagnosed last year and my heart just broke for my cousins. I’m a nurse and know all too well from a health care professional perspective. My Mom passed a few months ago due to cancer and I realized right away that my Mom’s other sister was acting strange. She is still going through an assessment. However I suspect Lewy Body dementia in her case. My cousins were very concerned about her behaviour, even blurting out during the eulogy and I kindly addressed her after she repeated what I said about her and my Mom being so close and agreed with her. My Mom was the youngest in her family and was so worried about her sisters. ❤ It’s such a cruel disease. There is some medical research ongoing that looks promising. Keeping Heather active and engaged , even literally taking her hands in yours to assist her in brushing her teeth as long as you can. John, your videos should be shown to student doctors, nurses, LPNs and CCA’s programs as a teaching tool. As health care professionals, I always tell students and new graduates that we don’t just take care of a patient, but their loved ones as well. Medical treatment is only a part of care. Compassion, understanding and empathy is essential. ❤
Thank you so much for your heartfelt comments, and especially complementing me on these videos. I sure didn’t expect any of this reaction and I appreciate every single reply.
I love what you said about taking care of the loved ones, as well. It is very true, and I don't know how much of this is covered during medical training, but it really is an important part of it.
Clean, safe, comfortable and HAPPY! Great addition (John) and a good goal because so much of this caregiving is stressful even when we stay as calm as possible. I still think that in addition to the EXCELLENT comments from you, a health care professional, the loved one / caregiver often knows their person the best. When we are silent, calm, and at peace then we can pick up on the fears or concerns that our loved one may have trouble communicating. We can also get tips from them about what makes them happy and we can then be happy, too! And, for our family, it seems to be a constantly changing and evolving situation so that keeps me on my toes. In addition, today, I learned about a resource in the U.S. (from admin at the neuro's office) called Aging and Disability Resource. There is so much information that the pros know but some of us family members have very little knowledge. So, this resource may be helpful in educating me about the specific diagnoses (we have several things going on) even though there are certainly unique and varying speeds of progression / decline. Today, I learned that a lot of my extreme concerns about seemingly super fast decline is ... really just a part of the expected path. Things are advancing and my loved one is right, 'it could always be worse'. Thanks to the entire RUclips community for sharing inspiration, knowledge, calm peaceful strength and reminding each other that you are not alone.
I thought the part where you said it isn't about improving life, but about making things comfortable was touching. I am still young and can be impatient, especially with my parents and older relatives. I can see myself getting frustrated with things not improving if I were a caregiver for someone. I will try to remember your kindness and wisdom when I am in the position of having to care for a loved one.
My husband is in stage 6 now. I am now actually thinking of making burial arrangements. He has begun to sleep a lot during the day now and wakes up confused.Still says he’s getting better. Just started year 15. This disease changes both the patient and the caregiver. Acceptance is hard but more than necessary. It will save your life. Carry on❤
@@suzannereeves7768 there are seven stages with subgroups. If you search dementia stages you can get a lot of information,but it was his palliative care doctor who deemed he is now in stage 6e now which is moderately severe dementia.
One of the good? things about dementia…not that there’s anything good about it…is that the person suffering it doesn’t always feel distraught about what’s happening. In my mom’s case, I remember her telling me about her hallucinations. At first she saw shadows, then eventually “realized” it was us, her children, and our childhood dog, Patches, coming to visit. She just accepted this matter-of-factly. All you can do is try to keep things light and cheerful, as you’ve been doing. Thanks for the videos.
I wish I had seen a video like this in 2019. My husband was acting erratically and was ultimately diagnosed with vascular dementia. He wouldn’t give up his driving and he became combative and delusional at the end. He passed away in 2020, so a relatively short duration for the disease, although in retrospect I think I missed some of the clues earlier on. We were married 40 years. You are doing a wonderful job and Heather seems like such a sweetheart!
This is the real meaning of the phrase "in the good and the bad" I suppose... Only a few people can handle the consequences of the second part of the phrase, you are one of them. You are good man, stay strong!! A big hug from Italy to your family.
Having gone through this with my husband it was frightening to watch the transition of this disease.My saving grace as a caretaker was to meet him at where he was and to let go of any expectations of him being who he once was.I cherished the little moments of memory and recognition and was very grateful for the moments of connection.
Agree. My mum’s first symptoms were so slight. She was retired RN, raised six children, it was hard to see anything wrong with those beginning changes. We attributed to pure memory aging. She was frustrated, and it came out in anger. I was living with her for several yrs prior, we traveled together etc, I’d starting doing majority of driving. She always asked me why I drove different routes than she did. She finally confessed to me after one bitter altercation, that she was afraid she would not remember how to get to my brother’s house. That was a true eye opening moment for me. I realized that most of her frustration was due to her “knowing” something was wrong. I started living in her world, being present in the moments of her life, and the last few yrs were most memorable. Not easy years, and we lost her in 2022, but it was the greatest privilege of my life to care for her. I learned so much, and miss her every day. She was in assisted living for last couple yrs, and I now volunteer at the same facility. Always living in “their” world.❤😢
I am so sorry for your heartfelt loss.of your mother.Thank you for your loyalty and love you blessed your mom with in her difficult and isolating journey in dementia. I too took away from the caretaker experience feeling so privileged that I could be that loving support and anchor for him.I suppose to them we were that bright light of a lighthouse in a raging storm that brought them back to safety and security..Tale Care💞
I am a retired nurse. I specifically went to Boston for Alzheimer’s/Dementia specific training It’s as horrible disease. I worked with dementia patients until I retired. As partners husbands/wives that’s our responsibility to take care of our other half. Ty for taking care of her. U wouldn’t believe things I’ve seen with family members.
As you were speaking, I felt like you were telling mine and my husband's story. He received a diagnosis of early onset dementia, leading to Alzheimer's Disease; he was 60. I remember him saying that he had brain fog. About four years after his diagnosis, he had a fall down our basement stairs, which resulted in being brought to the hospital and eventually to long term care. He used to be a music teacher, and he was a fabulous piano player. Now he doesn't play. I hope to keep listening to your vlogs. I found this very helpful in my situation. Thank you for sharing.
I believe my husband has dementia. However, I can not get him to go to the doctor. He knows something is wrong but is scared to find out. I just keep researching and do my best not to get frustrated as he is not always kind with his words but doesn't appear to know he's saying them. Keep up your strength and shower her with love when she allows it. Thank you for sharing. It makes me feel a little less alone.
Thank you for your loving honesty. My sister has had ms for @ 25 years- it’s progressive and such a cruel disease, like many. I love the way you treat your “ wife” , sadly she’s no longer that- I really like to see her doing the Heather chuckle when she is happy. Good luck and stay strong and positive. ❤️🇦🇺
I walked this journey with my parents starting in 2014/15 when my mom was diagnosed with dementia. It was awful. It was made worse when my dad was killed by a drunk driver near the end of 2016 and I was left largely alone dealing with my mom’s care. She passed in December 2021 after a long battle. I feel for you and all you’re going through and pray that you have the strength, comfort, and support you’re going to need. ❤
My husband has just recently started with things you discussed in your video. I want to thank you. I was making some notes but you inspired me to start a daily journal. Will be following you and praying for you. This is hard
Thank you for sharing. I am beginning this journey with my sister. Btw my brother-in-law and nephew we are realizing there is an issue and having your videos is helping me understand how to respond to it and how to be an advocate.
I was wondering how it started with Heather but I didn't want to ask .Thank you for sharing with us.Its all so sad and you are a very good husband and man for taking care of her the way you do .Praying for you and Heather I can see how much you love Heather .
John you are an excellent husband and caregiver. Keeping it simple is wonderful. I once was a caregiver for a lady with dementia. She forgot that her husband had died. Her children were adament that we keep telling her that her husband had passed. The look on her face was unbelievable. I never would tell her. Enjoy your time with Heather everyday. You both are beautiful.
My heart just breaks from you, I am also so impressed on how well you handle all of this as it’s the hardest job you’ll ever have , it takes a very special person to do it as well as you do. 🤗🤗👍👍🙏🙏
Heather is so very lucky to have you, my step mother put my dad in an old people's home at the first signs of dementia. He lived there for about 5 years . I live about 10,000. Miles from them, but did fly back often to visit. Many people either can't cope or refuse to cope with a declining loved one. God bless you.
The algorithim brought me here from Trey and Theresa Pippen's channel. For anyone going through caregiving, there is a lot of information in these channels from the comments alone. The things I can tell you from experience is you can't second guess dementia. There are many forms and they don't follow a playbook. The different forms present differently on a person to person basis. Trust your intuition, you know them probably better than anyone. Let them know that you've got their back and love them unconditionally. Keep them at home as long as you can and if you can't go to visit them often. Do simple things with them. Thanks for posting this video and sharing your wife's and your story.
Very good comment! They don’t always follow the playbook… I find so much of the mainstream dementia information is completely unreliable in our journey here. For that reason, I’m just making it up as I go.
@@JohnvanGurp A hospice nurse is the one who told me to trust my instincts when caring for my mother. It's a difficult journey because everything we know as being logical goes out the window. All you can really do is roll with it. Wishing you and your family the very best!
John, you are truly a very good man! Your love, patience and devotion to Heather is so lovely to see. We have walked this long , sad road with both parents. Heather is blessed to have you ! I should say you are blessed to have each other❤❤❤ God Bless You Both!!
A video like this would have been wonderful when my parents started acting out these problems. Maybe I would have understood it earlier. Thank you for allowing us to see what you and Heather are going through.
It’s so difficult to watch your loved one disappear. I’m sorry, John. But you are so kind to her. It must be terrifying to realize something is happening to you, but it is also terrifying to watch it happen.
Thank you for making this video. It struck many chords for me. My husband was diagnosed at 57 with YOD, 18 months ago, and a very similar progression as that of your wife, with the aphasia early. He was a teacher until 2021. The emotional flatness, the vacancy.. it is a lonely experience for the partner left behind. My husband was aware in early 2022 that there was something wrong, that he could not think. Now, I really don't know what he thinks or understands. I like your term "cognitive horsepower". Like you, my goal is to keep things calm peaceful, positive and reduce my expectations. Thank you again I hope you will keep sharing as you are a little ahead of us on this path and very relatable. ❤
Sounds like exactly what we are going through right down to the timeline. It’s so difficult. I’m glad you could relate to my videos. If for nothing else then to know that you’re not alone in this. Take gentle care of yourself and I wish you well going forward.
I just found your video. I am currently going through this with my sister. She lost her husband back in 2016 to Alzheimer’s. In 2018 i told her she needed to see a neurologist because something was wrong. It was a real process! She lived alone so it took a lot of work and undercover acts to figure out what was going on. In 2022 I was running to and from her house several times a day to make sure she was eating, giving her medication because she was confused about when to take what. She stopped bathing, started having accidents, apathy set in. I took her keys off of her in early 2022, so I had to drive her everywhere. She couldn’t shop on her own because she couldn’t figure out what to eat. She only wanted junk food, all sweets. Started having more significant speaking issues. In December of 2022 I had to put her in memory care at 63 years old. It killed me. I tear up just typing this. She wasn’t safe at home anymore. We got a suspected diagnosis of FTD (frontotemporal dementia) and aphasia. Fast forward nine months and she couldn’t speak anymore. It’s been about a year now since she could talk. Her new diagnosis is bvFTD (behavior variant) and global aphasia. I still pick her up at least once a week and take her for a ride. I speak to her like normal, but she can’t answer and doesn’t understand what is being said to her. It’s a rough ride every week. Such a cruel disease! I think you are very much like me, just going with the flow. Nothing to stop it, so you just make the best of it. I’ve videoed my sister and think about posting it for awareness. Anyway, you’re not alone.
Thank you for sharing 💞 Its interesting that Heather mentioned feeling like she had brain fog. It must have been extremely scary for her in those early days. She's very lucky to have you, John. Stay Strong 🙏🏻✨️
Thank you John for sharing all of your information 🤗 I don’t live very far from you in Sydney , Nova Scotia. I lost my Dad in November 2020 to dementia. I wish that I had documented the last few years of his life; emotionally I just 0:01 couldn’t do it . Hats off I to you for your bravery. With each and every of your videos that I watch, my heart is with you & Heather. I don’t need to tell you how difficult this disease is to deal with but you are doing an amazing job . My dad was a math genius, head of the math department at my high school(Sydney Academy) he was a true gentleman, a wonderful father, very strict but loving.He was also a very talented woodcarver. I have some wonderful memories of him & that’s how I live my life. I keep him in my heart, my soul every day❤ He never forgot myself, brothers or sister or my Mom & he still had a sense of humour. He was an eternal optimist & so am I. My Mon is a retired nurse & opted to care for him at home but it became too much for her. We all despised sending him to a nursing home , but it came down to risking my Mom’e health as well. Always know that you are a wonderful husband & a great caregiver to Heather. It’s frustrating & rewarding at the same time. Looking forward to more of your videos . I would love to meet you & Heather 🩵🩵♥️♥️
Powerful episode John. The only silver lining I see for someone with full on dementia is that they are usually unaware of it. This may be a sliver of a silver lining for the caregiver as well. You don't condescend to her, patronize or baby her. Total respect! THAT'S LOVE and WISDOM on your part. Stay strong. You are not alone. ❤
Your calm demeanor is so impressive. My husband, 60, was just diagnosed with early onset Alzheimer’s. I had alarm bells a couple years ago but he refused to go to the doctor. He had memory and personality changes. Severe depression. I finally got him to go to the doctor. He tells me he feels like he is losing himself and is quite aware and it’s heartbreaking 💔. Maybe a blessing she was more unaware of the severity because listening to the anguish of him talking about how he doesn’t want to forget us is sometimes too much for my heart.
John, I can appreciate what you are going through. My father was diagnosed with PPA and there were so many subtle warning signs that we just discounted. The news confirmation was devastating, of course. He spoke seven languages, was a chemical engineer and lived for cryptograms, etc. He struggled to speak and it was frustrating just seeing him decline. I know that the time you spend with Heather will pay back in spades and, odd as it may seem, you will miss these times as well. Take care.
In 2020, My husband was diagnosed with early onset Alzheimer’s. Symptoms pretty much started a couple years prior to that starting with not being able to do his job. Jeff was diagnosed and has been on disability since 2020. In the past year he has quit driving and aphasia is rearing its ugly head. Jeff knows he has Alzheimer’s but does not want it mentioned. These dementia disorders are so sad. Thank you for sharing your life.
I love this video of yours John, you are extremely kind and patient, a very rare trait to find in most people at the best of times. Thank you for sharing your valuable information 🤗
Your Heather is blessed to have you. My husband's temperament was much like yours. He was always the one talking me off the ledge when I got upset or worried. He died from colon cancer 8 & 1/2 years ago. After he was gone, I would channel him whenever I got upset or worried about something - WWMD (What Would Michael Do?) I send you prayers of support for the months and years to come. 💙
You’re an inspiration to me. I’m at the stage of life when you start to “worry” about what might happen to me or my husband. This video has given me practical and emotional courage should that arise. I’ve experienced dementia first hand before but spousal decline is a different scenario. Well done on all you do and how you do it. 😊
You are walking the path of Love, moment to moment. And you are demonstrating what it looks like to be an authentic, kind human being. Praying for you & Heather.🙏🙏🙏
I guess the blessing is that the person doesn't have any idea what is going on since it starts out fairly slow. I can remember my sister when she first thought her memory was off, she was reading books on how to improve memory, eating healthier, walking more , but still declined. You are making life as enjoyable as possible for Heather and she sees that in your smile and laughter, even if she is unable to respond or totally connect all the dots.
I have seen the panic and scramble initially...even them trying to cover up things, misplaced, can't find, getting out if the car, door open taking in groceries, then just sitting in kitchen...never finished. In hindsight that us a sad time that we all can identify with. You hope you will know and notice, to correct, but sadly eventually have to accept. Horrible. A friend had thus happen to Hus mother-in-law, so they unhooked her stove. Burned through pans, fire dept, etc. Then bathing stopped. Not objecting to it, just forgotten so put on her daughter's schedule. The day came when the 3 of them had a planned drop off at alz assisted care facility, she was ignoring--really simply not grasping, the motions they went through. Took her into her familiar decorated room, put her tv on. Put her in bed. She fell asleep and they visited her daily starting then. She never asked to go anywhere, surprisingly no temper. never asked about home either. Not a where am I. Nit a when are we going home, not a peep.fir another year when she stopped talking altogether, then non-recognition, sat. Never looked out window, maybe blind. The whole floor of olds sat around a piano or stereo, singing every word of 1970s songs or church hymns, until one by one. They slowly froze off. they were nonverbal otherwise.
@@CynthiaWord-iq7in yes it’s sad, my sister was in the process of being diagnosed at 71 but it had been evident for about 5 years. She could no longer drive or properly dress herself but resisted anything was wrong. She had a stroke and never regained consciousness which I saw a blessing given the road she had ahead of her.
This must be incredibly difficult for you . And yet your videos are humorous at times and kind. Any one of us in our late 60's early 70's could be in this position at one time. By sharing your story your helping some of us prepare for and understand dementia more. Cheers from Northern Canada.
As a family we went through this with my father in law. It started sometime many years ago but his decline worsened rapidly after he suffered a TIA or possible stroke. My mother in law tried to keep him at home as long as possible but at some point he became angry/argumentative/and they began to physically fight. Shortly after we found out about this we investigated senior care homes which in our area of the US are not exactly advanced facilities. He lost his battle with dementia after contracting Covid and pneumonia in February 2024. My prayers to you and Heather. It’s a devastating disease which has such stigma attached to it. I have so much more I’d say but you already understand everything as it is your daily life. I think of you two often. Prayers and light go out to you from South Georgia in the US.
So heartbreaking. You are doing great with Heather, taking it as it comes, with a lighthearted touch. Although Heather can't express it, she knows you are there for her. ❤
I have no words just compassion for you both. You sharing your journey with others has to help other people for sure. Bless your heart for having so much patience.
Although my husband is much older than Heather, his dementia early signs were much like hers.....ie: asked me to pay the bills and write the checks; was happier if I was driving...]to the point where he could no longer drive without getting lost] etc. Although the signs were subtle in 2020 they became glaring by 2021. It wasn't until August of 2022 that we met the neurologist and received the diagnosis. What a journey it has been and even tho my husband is now in MC, I visit him every day and the worry/grieving and sadness is still profound. I love your videos. I esp love this one. Thank you for taking the time to film it for us to watch. Your channel provides me with so much comfort watching someone else going through the same as me.
Stay strong brother. Went on the same journey with my Mother in-Law. In the end, death was a release for her and for my wife and myself, 8 years from the initial diagnosis. Truth be told she had been gone many years before she finally left us. If there's any consolation for us she never got know the grief that her husband of 60 years had already left us. Stay strong...
Very interesting. I’m so glad you covered this. As older couples we question each other when we forget something or make an odd statement. We just never know but hearing you say that she was making mishaps every few days was a clear sign. Thank you for sharing.
We're all rooting for your family and our sending our heart felt wishes your way. I really appreciate all that you share, I'm in my early 70's and my husband is 4 years older and both of us have members who died from dementia. When we remodeled our house 7 years ago we added a care giver apartment just as insurance so we could stay home till the end of life should we have a debilitating illness. If I'm ever in your situation I hope to have the kindness, patience and compassion you do.
It's a devastating diagnosis. It's so touching when I see her talking. That was the Heather you've known for such a long time. She was aware there was something wrong. It might be a strange thing to say, but maybe her condition softened the blow. it really is dementia. I've seen people with dementia who turned very angry. Like their personality changed. Heather is so sweet. Thank you for your video's. They say people live much longer now. But more people will suffer from dementia. So it's good to know how to treat your loved one who is getting more and more incapable of doing things on her own. We have to learn to be patient and lower out expectations. We need to learn cause it can happen to anybody. You didn't ask for it but you're our teacher. That's a gift. Thank you. ❤ for your family.
Oh my goodness. You are such a kind, attentive, caring man. I’m so glad you are there for Heather. I’m soaking in as much information from you as I can. I’m so appreciative of you sharing your experiences with dementia. We are helping to support my father in law, he’s in the early stages of dementia right now. I’ll keep you & Heather in my prayers. God bless y’all. From Georgia (my name) in the state of Illinois, USA. XXXOOO 🩷
I so much agree with your kind approach with Heather. Our acceptance of the decline is absolutely necessary to enable us to be good caregivers. The beginning stage can be the hardest because we don't really know it's a disease yet. We can think the person is disrespectful, careless, or even rude. It's so important to tune in to our loved one to identify when behavior is not their 'norm'. I am so surprised at how quickly Heather's decline has occurred. Taking time to convey to all of us your experiences is so helpful to so many of us. I pray your strength and perseverance continue.
Thank you so much for taking the time to do this particular video. I can sure see why she focused on aphasia, when she understood what aphasia was, instead of dementia. And I guess it’s a blessing the very disease she had kept her from worrying more than she did. Regarding the “talking head” aspect of this video, do not worry about it! I don’t think any of us subscribers are here for fancy editing. And at least in my opinion, you do not go on too long or repeat too much. Take care and see you in the next one.
John I recently came across your blog and am now a subscriber. I think your approach to this difficult situation is absolutely remarkable. I feel for you both as well as your children, family and friends. It's like a slow, insidious loss of your loved one; albeit not so slow. I'm quite sure that you are helping so many people who are in similar situations, which is commendable. I like your statement about this being palliative care. That word is most often associated with cancer but it is completely appropriate for dementia care too. Your intelligence shines through in the way you frame all that is happening. You are a wonderful husband and a remarkable human being. Please know that people's thoughts and support are with you. YANA right back at you❤
Excellent perspective on Heather and your journey. You mentioned you were going to edit the video. The video, as is, is very informative and gives a timeline. Amazing how quickly Heather has declined. I applaud you for your courage to Keep It Simple. Sounds easy but it’s not.
You're doing a great job. You summarized it so well: keep your loved one safe, clean, fed, happy. She will always know that you are a loving safe person, even if she should get mixed up about the relationship. God bless you.
God bless you all. We all have something wrong with us, it's called "the human condition". We all live, we all die. I'm very old, I'm very blessed, I don't worry.
John, our family is having a very similar experience with our mom. Her first symptoms were having a hard time finding the right works, and eventually having a hard time following conversations. It took a long time to get the right diagnosis of PPA dementia. Like your Heather she is very precious to us and it is our goal as a family to keep her with us here on our family farm. My siblings and I work together to care for her as a team. So we can support each other as we move through this process. I hope you have a good support system, and I wish you well. It seems like your Heather has always been a beautiful soul. She is blessed to have you as her life partner. Take care , and thank you for sharing your journey.
You were very wise to keep a journal of things! I'm sure that was helpful for the healthcare workers. You painted a picture of what you both were living with day to day!
You are an amazing man, John, as I am sure Heather is an incredible woman. You are fortunate to have one another. And we--your audience--are blessed as well. Dementia is a disease that will affect all us baby boomers. All of us. We will either be afflicted with the disease ourselves or find ourselves caring for a loved one who has been bowled down by this illness. Maybe both. Thank you for showing us your unfailing ability to love, to be there for Heather in every way.
As we age many of us who do not have a partner wonder what will become of us. John, you and Heather are bound together and because of that you know her heart. She is so blessed to have you and YOU are blessed to show her your undying love. We all thank you your sharing of this life which enriches us all. God bless you both.
so my better half works with the elderly, mostly dementia related, here in mtl. she's been doing it since before we met 12 years ago. i hear the stories but most, if not all, have a missing link. the question i always wanted an answer to was, " how this must affect those closest to the person suffering with this illness. i thank you for shedding light on this topic and clearing up a few things for me. i have only seen 2 of your videos so far but have subscribed. you seem very much like someone i would love to have as a friend. Heather is lucky to have you. most of the stories I've heard from my wife do not include someone like you. its truly unfortunate that you have something to be very proud of that is probably the last thing anyone would want to be proud of. that is, of course, taking care of a loved one, as you seem to be doing, under very difficult circumstances. i will keep watching because i believe that your story is equally, if not more, important than Heather's. you're right, you're not alone. this guy in mtl, that is so far, only indirectly touched by this horrible illness is watching you and is thinking of you.
You truly are a hero. Your Heather is such a beauty and her smile still lights up a room! I so appreciate your sharing to help me deal with my cousin who is now aphasic and no longer ambulatory. He's quite a bit younger than me and it breaks my heart.
Heartbreaking. Heather doesn't know her condition but is lucky to have you as her husband. John, you are doing a wonderful job taking care of her. ♥👍
My mom don’t know either
@@user-qb8qm4mp5n thank you so much.
@@user-qb8qm4mp5n I agree 👍🏻.
I agree. He's amazing.
If she could keep one, Heather’s diary would read, “Another great day with my guy, where I am clean, safe, and happy. He is the best.” We’re at the point where we have to let all of the unspoken words matter - feel them on the inside and know that we are still loved. ❤
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What a beautiful comment Lee. ❤
My mom came home from the mall with a stranger and said her car was stolen. Two weeks later, the police finally contacted my dad about his car being in the lot for some time. That was the end of her driving. My dad did an excellent job taking care of her.
Thank you dear Heather. There’s a RUclips army of us holding you both up in prayer. ❤
Hi John , I am in England , and have worked with people who had dementia . You are doing a wonderful job , not only with Heather but sharing such valuable information to help many people on a similar journey... much love and respect x
Thank you so much for your vote of confidence.
I am in Denmark, and we refer to dementia as an illness that mostly hurts the loved ones of the patient. Your story seems to be an example of that. By the you realized that something was wrong her brain was already so impacted by the illness that her emotional reactions were flattening. Thank you for sharing. We all need to be more aware of dementia in aging population. Best thoughts from Odense, Denmark.
My whole family eventually gets dementia. I am noticing things with myself as i age.
My husbands whole family has had it and the last uncle on his mums side now has it. It's a truly awful illness for the family.
That is a good way to think about the effects of dementia.
@@Junichild They say if you have dementia in your family you have 50 % chance of getting it as well. You can get a test to see if you carry the gene and then take necessary precautions accordingly.
The long goodbye 😢
My dad is now 85 and I started noticing something was “off” around the time of the big 80th birthday my mom was throwing for him. His eyes looked …. A little “spaced out.” Then, i remembered how he had paid every bill and done the annual taxes my parents entire marriage. 60 years. But, one year, he just didn’t do the taxes. No explanation. So, my mom rushed to figure it all out and was dumbfounded as to what was going on. This man had run a company for 60 years. Then, he started asking who the next door neighbor was; how to operate his ‘cell phone’ (it was a cordless house phone 🥺), etc. Now, he pretty much is just ‘there’ but he’s still my dad ❤. I did have a big cry last night when no one was around. I deeply miss his personality, sense of humor, his insight, his advice. It’s devastating. And, I know my mom deeply hurts & misses her best friend. 🥺🙏🏻 prayers to you and everyone suffering from dementia.
I am sure that you have far more great memories of your father and I hope you can dwell on those good memories other than how he is spending his last year's. This is probably easier to do once he is finally at peace. My FIL had alzheimer's but he was lucky, his hand was taken from a heart attack, yes we consider him lucky. His family members lived for years with this disease but Art lived with it for 5 years after diagnosis. Absolutely devastating worthless disease along with many other diseases. I wish you well on your journey and your father's.
Good post Scarlett.
A ten year span for mom and I, noticing her apathy and final demise
@@jeanineacree6355 🥺❤️🙏🏻
True love lasts forever
We should all be so lucky to have someone like John taking care of us. You're a remarkable person who has been given a big caregiving task. Sending supportive and peaceful thoughts your way!
The best advice ever , "keep it simple, lower your expectations". It means so much to me right now. Thank you so much❤
I gotta say: you are a wonderfully refreshing reminder that good people still do exist. Ty. 🙏🏻❤️
Even though Heather can't reciprocate your affection, if you need to hold her hand or feel her hug, do that. It's important for your well being to still feel connected to your spouse. You are doing such a great job of staying upbeat and keeping her safe and happy. ❤
John that was very emotional and a trip down memory lane for some of us. Clean, safe and happy is the essence of great care. You sir are doing an outstanding job and clearly Heather is your world. Take care and we your subscribers are right here. God bless from Lincolnshire England.
John is doing an excellent job at caring for Heather. It’s a 24/7/365 job. He keeps her clean, safe, and comfortable.
I don't have words 😢 you're doing a wonderful job caring for Heather. Stay strong!
My husband has dementia/Alzheimers and his whole personality has changed. He's angry and frustrated where he never used to be. Thanks for sharing
I am living the same.
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I have been following your channel for a little while now. My heart goes out to the both of you. You're doing a remarkable job caring for your wife.
Thank you so much for sharing your journal John. Your level of acceptance and engagement is reflected in Heather’s level of contentment. Your videos are a gift to the community.
This is such an important video to make. My oldest Aunt was diagnosed last year and my heart just broke for my cousins.
I’m a nurse and know all too well from a health care professional perspective.
My Mom passed a few months ago due to cancer and I realized right away that my Mom’s other sister was acting strange.
She is still going through an assessment. However I suspect Lewy Body dementia in her case.
My cousins were very concerned about her behaviour, even blurting out during the eulogy and I kindly addressed her after she repeated what I said about her and my Mom being so close and agreed with her.
My Mom was the youngest in her family and was so worried about her sisters. ❤
It’s such a cruel disease. There is some medical research ongoing that looks promising.
Keeping Heather active and engaged , even literally taking her hands in yours to assist her in brushing her teeth as long as you can.
John, your videos should be shown to student doctors, nurses, LPNs and CCA’s programs as a teaching tool.
As health care professionals, I always tell students and new graduates that we don’t just take care of a patient, but their loved ones as well.
Medical treatment is only a part of care. Compassion, understanding and empathy is essential. ❤
Thank you so much for your heartfelt comments, and especially complementing me on these videos. I sure didn’t expect any of this reaction and I appreciate every single reply.
I love what you said about taking care of the loved ones, as well. It is very true, and I don't know how much of this is covered during medical training, but it really is an important part of it.
Clean, safe, comfortable and HAPPY! Great addition (John) and a good goal because so much of this caregiving is stressful even when we stay as calm as possible. I still think that in addition to the EXCELLENT comments from you, a health care professional, the loved one / caregiver often knows their person the best. When we are silent, calm, and at peace then we can pick up on the fears or concerns that our loved one may have trouble communicating. We can also get tips from them about what makes them happy and we can then be happy, too! And, for our family, it seems to be a constantly changing and evolving situation so that keeps me on my toes. In addition, today, I learned about a resource in the U.S. (from admin at the neuro's office) called Aging and Disability Resource. There is so much information that the pros know but some of us family members have very little knowledge. So, this resource may be helpful in educating me about the specific diagnoses (we have several things going on) even though there are certainly unique and varying speeds of progression / decline. Today, I learned that a lot of my extreme concerns about seemingly super fast decline is ... really just a part of the expected path. Things are advancing and my loved one is right, 'it could always be worse'. Thanks to the entire RUclips community for sharing inspiration, knowledge, calm peaceful strength and reminding each other that you are not alone.
I thought the part where you said it isn't about improving life, but about making things comfortable was touching. I am still young and can be impatient, especially with my parents and older relatives. I can see myself getting frustrated with things not improving if I were a caregiver for someone. I will try to remember your kindness and wisdom when I am in the position of having to care for a loved one.
What a touching comment ♥️
Beautiful - you have a good heart! ❤️
My husband is in stage 6 now. I am now actually thinking of making burial arrangements. He has begun to sleep a lot during the day now and wakes up confused.Still says he’s getting better. Just started year 15. This disease changes both the patient and the caregiver. Acceptance is hard but more than necessary. It will save your life. Carry on❤
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How do you know what stage your husband is in? My husband is in an assisted living facility with dementia that is slowly getting worse…
@@suzannereeves7768 there are seven stages with subgroups. If you search dementia stages you can get a lot of information,but it was his palliative care doctor who deemed he is now in stage 6e now which is moderately severe dementia.
One of the good? things about dementia…not that there’s anything good about it…is that the person suffering it doesn’t always feel distraught about what’s happening. In my mom’s case, I remember her telling me about her hallucinations. At first she saw shadows, then eventually “realized” it was us, her children, and our childhood dog, Patches, coming to visit. She just accepted this matter-of-factly. All you can do is try to keep things light and cheerful, as you’ve been doing. Thanks for the videos.
Exactly
I wish I had seen a video like this in 2019. My husband was acting erratically and was ultimately diagnosed with vascular dementia. He wouldn’t give up his driving and he became combative and delusional at the end. He passed away in 2020, so a relatively short duration for the disease, although in retrospect I think I missed some of the clues earlier on. We were married 40 years. You are doing a wonderful job and Heather seems like such a sweetheart!
This is the real meaning of the phrase "in the good and the bad" I suppose... Only a few people can handle the consequences of the second part of the phrase, you are one of them. You are good man, stay strong!! A big hug from Italy to your family.
Having gone through this with my husband it was frightening to watch the transition of this disease.My saving grace as a caretaker was to meet him at where he was and to let go of any expectations of him being who he once was.I cherished the little moments of memory and recognition and was very grateful for the moments of connection.
Very well said… Meet him at where he was! I love it, thank you so much.
Agree. My mum’s first symptoms were so slight. She was retired RN, raised six children, it was hard to see anything wrong with those beginning changes. We attributed to pure memory aging. She was frustrated, and it came out in anger. I was living with her for several yrs prior, we traveled together etc, I’d starting doing majority of driving. She always asked me why I drove different routes than she did. She finally confessed to me after one bitter altercation, that she was afraid she would not remember how to get to my brother’s house. That was a true eye opening moment for me. I realized that most of her frustration was due to her “knowing” something was wrong. I started living in her world, being present in the moments of her life, and the last few yrs were most memorable. Not easy years, and we lost her in 2022, but it was the greatest privilege of my life to care for her. I learned so much, and miss her every day. She was in assisted living for last couple yrs, and I now volunteer at the same facility. Always living in “their” world.❤😢
I am so sorry for your heartfelt loss.of your mother.Thank you for your loyalty and love you blessed your mom with in her difficult and isolating journey in dementia. I too took away from the caretaker experience feeling so privileged that I could be that loving support and anchor for him.I suppose to them we were that bright light of a lighthouse in a raging storm that brought them back to safety and security..Tale Care💞
You're doing great at loving your wife John!
You John, are awesome. Please keep us updated. So sorry for her loss, and yours. You are a good man.
I am a retired nurse. I specifically went to Boston for Alzheimer’s/Dementia specific training It’s as horrible disease. I worked with dementia patients until I retired. As partners husbands/wives that’s our responsibility to take care of our other half. Ty for taking care of her. U wouldn’t believe things I’ve seen with family members.
As you were speaking, I felt like you were telling mine and my husband's story. He received a diagnosis of early onset dementia, leading to Alzheimer's Disease; he was 60. I remember him saying that he had brain fog. About four years after his diagnosis, he had a fall down our basement stairs, which resulted in being brought to the hospital and eventually to long term care. He used to be a music teacher, and he was a fabulous piano player. Now he doesn't play. I hope to keep listening to your vlogs. I found this very helpful in my situation. Thank you for sharing.
Thanks for sharing your story as well… I’m so sorry for what happened.
I believe my husband has dementia. However, I can not get him to go to the doctor. He knows something is wrong but is scared to find out.
I just keep researching and do my best not to get frustrated as he is not always kind with his words but doesn't appear to know he's saying them.
Keep up your strength and shower her with love when she allows it.
Thank you for sharing. It makes me feel a little less alone.
Thank you for your loving honesty. My sister has had ms for @ 25 years- it’s progressive and such a cruel disease, like many. I love the way you treat your “ wife” , sadly she’s no longer that- I really like to see her doing the Heather chuckle when she is happy. Good luck and stay strong and positive. ❤️🇦🇺
I walked this journey with my parents starting in 2014/15 when my mom was diagnosed with dementia. It was awful. It was made worse when my dad was killed by a drunk driver near the end of 2016 and I was left largely alone dealing with my mom’s care. She passed in December 2021 after a long battle.
I feel for you and all you’re going through and pray that you have the strength, comfort, and support you’re going to need. ❤
This is SO incredibly helpful. My partner is showing some early signs of dementia. Thank you for your excellent tips & information.
Prayers for you and Heather, I honestly believe it is harder on the loved ones than it is on the one with dementia. Stay strong!!!
You are truly a loving and caring man doing all that you can to be by your wife’s side. Many hugs and prayers…please stay strong. ❤
My husband has just recently started with things you discussed in your video. I want to thank you. I was making some notes but you inspired me to start a daily journal. Will be following you and praying for you. This is hard
Thank you for sharing. I am beginning this journey with my sister. Btw my brother-in-law and nephew we are realizing there is an issue and having your videos is helping me understand how to respond to it and how to be an advocate.
I was wondering how it started with Heather but I didn't want to ask .Thank you for sharing with us.Its all so sad and you are a very good husband and man for taking care of her the way you do .Praying for you and Heather I can see how much you love Heather .
John you are an excellent husband and caregiver. Keeping it simple is wonderful. I once was a caregiver for a lady with dementia. She forgot that her husband had died. Her children were adament that we keep telling her that her husband had passed. The look on her face was unbelievable. I never would tell her. Enjoy your time with Heather everyday. You both are beautiful.
My heart just breaks from you, I am also so impressed on how well you handle all of this as it’s the hardest job you’ll ever have , it takes a very special person to do it as well as you do. 🤗🤗👍👍🙏🙏
Can’t begin to tell you how much I appreciate this channel! Thank you so very much!!!
I’m so happy it speaks to you, thank you.
Heather is so very lucky to have you, my step mother put my dad in an old people's home at the first signs of dementia. He lived there for about 5 years . I live about 10,000. Miles from them, but did fly back often to visit. Many people either can't cope or refuse to cope with a declining loved one. God bless you.
Thank you John. I respect how you are treating Heather with much love and dignity.
The algorithim brought me here from Trey and Theresa Pippen's channel. For anyone going through caregiving, there is a lot of information in these channels from the comments alone. The things I can tell you from experience is you can't second guess dementia. There are many forms and they don't follow a playbook. The different forms present differently on a person to person basis. Trust your intuition, you know them probably better than anyone. Let them know that you've got their back and love them unconditionally. Keep them at home as long as you can and if you can't go to visit them often. Do simple things with them. Thanks for posting this video and sharing your wife's and your story.
Very good comment! They don’t always follow the playbook… I find so much of the mainstream dementia information is completely unreliable in our journey here. For that reason, I’m just making it up as I go.
@@JohnvanGurp A hospice nurse is the one who told me to trust my instincts when caring for my mother. It's a difficult journey because everything we know as being logical goes out the window. All you can really do is roll with it. Wishing you and your family the very best!
@@sydneyevans2637 🙏
John, you are truly a very good man! Your love, patience and devotion to Heather is so lovely to see. We have walked this long , sad road with both parents. Heather is blessed to have you ! I should say you are blessed to have each other❤❤❤ God Bless You Both!!
A video like this would have been wonderful when my parents started acting out these problems. Maybe I would have understood it earlier. Thank you for allowing us to see what you and Heather are going through.
My grandmothers last writing was, ‘It is getting dark outside.’ I felt that things were getting dark for her also.
As painful as this must be for you, this information is really useful. Thank you.
Good morning from the US. Just drinking my morning coffee ☕️ and listening. Bless you and Heather ❤
John Thank you for helping other couples going through this same illness.We are here, stay strong.❤️💙💐🇨🇦
It’s so difficult to watch your loved one disappear. I’m sorry, John. But you are so kind to her. It must be terrifying to realize something is happening to you, but it is also terrifying to watch it happen.
Thank you for making this video. It struck many chords for me. My husband was diagnosed at 57 with YOD, 18 months ago, and a very similar progression as that of your wife, with the aphasia early. He was a teacher until 2021. The emotional flatness, the vacancy.. it is a lonely experience for the partner left behind. My husband was aware in early 2022 that there was something wrong, that he could not think. Now, I really don't know what he thinks or understands. I like your term "cognitive horsepower". Like you, my goal is to keep things calm peaceful, positive and reduce my expectations. Thank you again I hope you will keep sharing as you are a little ahead of us on this path and very relatable. ❤
Sounds like exactly what we are going through right down to the timeline. It’s so difficult. I’m glad you could relate to my videos. If for nothing else then to know that you’re not alone in this. Take gentle care of yourself and I wish you well going forward.
I just found your video. I am currently going through this with my sister. She lost her husband back in 2016 to Alzheimer’s. In 2018 i told her she needed to see a neurologist because something was wrong. It was a real process! She lived alone so it took a lot of work and undercover acts to figure out what was going on. In 2022 I was running to and from her house several times a day to make sure she was eating, giving her medication because she was confused about when to take what. She stopped bathing, started having accidents, apathy set in. I took her keys off of her in early 2022, so I had to drive her everywhere. She couldn’t shop on her own because she couldn’t figure out what to eat. She only wanted junk food, all sweets. Started having more significant speaking issues. In December of 2022 I had to put her in memory care at 63 years old. It killed me. I tear up just typing this. She wasn’t safe at home anymore. We got a suspected diagnosis of FTD (frontotemporal dementia) and aphasia. Fast forward nine months and she couldn’t speak anymore. It’s been about a year now since she could talk. Her new diagnosis is bvFTD (behavior variant) and global aphasia. I still pick her up at least once a week and take her for a ride. I speak to her like normal, but she can’t answer and doesn’t understand what is being said to her. It’s a rough ride every week. Such a cruel disease! I think you are very much like me, just going with the flow. Nothing to stop it, so you just make the best of it. I’ve videoed my sister and think about posting it for awareness. Anyway, you’re not alone.
So sorry for the stress and anxiety you had to go through… It’s rough.
you are a amazing man.
remember to look after yourself aswell ....bless you both
Thank you for sharing 💞 Its interesting that Heather mentioned feeling like she had brain fog. It must have been extremely scary for her in those early days. She's very lucky to have you, John. Stay Strong 🙏🏻✨️
Thank you John for sharing all of your information 🤗 I don’t live very far from you in Sydney , Nova Scotia. I lost my Dad in November 2020 to dementia. I wish that I had documented the last few years of his life; emotionally I just 0:01 couldn’t do it . Hats off I to you for your bravery. With each and every of your videos that I watch, my heart is with you & Heather. I don’t need to tell you how difficult this disease is to deal with but you are doing an amazing job . My dad was a math genius, head of the math department at my high school(Sydney Academy) he was a true gentleman, a wonderful father, very strict but loving.He was also a very talented woodcarver. I have some wonderful memories of him & that’s how I live my life. I keep him in my heart, my soul every day❤ He never forgot myself, brothers or sister or my Mom & he still had a sense of humour. He was an eternal optimist & so am I. My Mon is a retired nurse & opted to care for him at home but it became too much for her. We all despised sending him to a nursing home , but it came down to risking my Mom’e health as well. Always know that you are a wonderful husband & a great caregiver to Heather. It’s frustrating & rewarding at the same time. Looking forward to more of your videos . I would love to meet you & Heather 🩵🩵♥️♥️
Sorry for the typos , was trying to hurry !
Powerful episode John. The only silver lining I see for someone with full on dementia is that they are usually unaware of it. This may be a sliver of a silver lining for the caregiver as well. You don't condescend to her, patronize or baby her. Total respect! THAT'S LOVE and WISDOM on your part. Stay strong. You are not alone. ❤
Your calm demeanor is so impressive. My husband, 60, was just diagnosed with early onset Alzheimer’s. I had alarm bells a couple years ago but he refused to go to the doctor. He had memory and personality changes. Severe depression. I finally got him to go to the doctor. He tells me he feels like he is losing himself and is quite aware and it’s heartbreaking 💔. Maybe a blessing she was more unaware of the severity because listening to the anguish of him talking about how he doesn’t want to forget us is sometimes too much for my heart.
John, I can appreciate what you are going through. My father was diagnosed with PPA and there were so many subtle warning signs that we just discounted. The news confirmation was devastating, of course. He spoke seven languages, was a chemical engineer and lived for cryptograms, etc. He struggled to speak and it was frustrating just seeing him decline. I know that the time you spend with Heather will pay back in spades and, odd as it may seem, you will miss these times as well. Take care.
This is one of the best blogs on Dementia. Your use of the term Palliative Care with a heaping helping of KISS. That’s perfect
What a very kind and generous compliment, thank you!
In 2020, My husband was diagnosed with early onset Alzheimer’s. Symptoms pretty much started a couple years prior to that starting with not being able to do his job. Jeff was diagnosed and has been on disability since 2020. In the past year he has quit driving and aphasia is rearing its ugly head. Jeff knows he has Alzheimer’s but does not want it mentioned. These dementia disorders are so sad. Thank you for sharing your life.
I’m so sorry to hear that, you’re probably going through the same thing. I’m dealing with here. Take gentle care.
You're a very good guy, John. I think about you and Heather daily at this point. Sending positive thoughts to both of you.
No better way to honor heather than to share your story about being a spousal caregiver. Blessing to you both ❤
Thank you, that’s the way I see it too.
I love this video of yours John, you are extremely kind and patient, a very rare trait to find in most people at the best of times. Thank you for sharing your valuable information 🤗
Thank you
I am learning so much from your RUclips videos. Thank you John. Stay strong John and Heather. ❤
That's lovely. Clean. Safe. Comfortable. Laughter. And affection even if it isn't reciprocated.
Your Heather is blessed to have you. My husband's temperament was much like yours. He was always the one talking me off the ledge when I got upset or worried. He died from colon cancer 8 & 1/2 years ago. After he was gone, I would channel him whenever I got upset or worried about something - WWMD (What Would Michael Do?) I send you prayers of support for the months and years to come. 💙
You’re an inspiration to me. I’m at the stage of life when you start to “worry” about what might happen to me or my husband. This video has given me practical and emotional courage should that arise. I’ve experienced dementia first hand before but spousal decline is a different scenario. Well done on all you do and how you do it. 😊
You are walking the path of Love, moment to moment. And you are demonstrating what it looks like to be an authentic, kind human being. Praying for you & Heather.🙏🙏🙏
I guess the blessing is that the person doesn't have any idea what is going on since it starts out fairly slow. I can remember my sister when she first thought her memory was off, she was reading books on how to improve memory, eating healthier, walking more , but still declined. You are making life as enjoyable as possible for Heather and she sees that in your smile and laughter, even if she is unable to respond or totally connect all the dots.
I have seen the panic and scramble initially...even them trying to cover up things, misplaced, can't find, getting out if the car, door open taking in groceries, then just sitting in kitchen...never finished. In hindsight that us a sad time that we all can identify with. You hope you will know and notice, to correct, but sadly eventually have to accept. Horrible.
A friend had thus happen to Hus mother-in-law, so they unhooked her stove. Burned through pans, fire dept, etc.
Then bathing stopped. Not objecting to it, just forgotten so put on her daughter's schedule.
The day came when the 3 of them had a planned drop off at alz assisted care facility, she was ignoring--really simply not grasping, the motions they went through. Took her into her familiar decorated room, put her tv on. Put her in bed. She fell asleep and they visited her daily starting then.
She never asked to go anywhere, surprisingly no temper. never asked about home either. Not a where am I. Nit a when are we going home, not a peep.fir another year when she stopped talking altogether, then non-recognition, sat. Never looked out window, maybe blind. The whole floor of olds sat around a piano or stereo, singing every word of 1970s songs or church hymns, until one by one. They slowly froze off. they were nonverbal otherwise.
@@CynthiaWord-iq7in yes it’s sad, my sister was in the process of being diagnosed at 71 but it had been evident for about 5 years. She could no longer drive or properly dress herself but resisted anything was wrong. She had a stroke and never regained consciousness which I saw a blessing given the road she had ahead of her.
That's terribly sad, poor beautiful Heather. But she's also incredibly blessed to have found a loving husband like you
You have a heart of gold. I wish you solace and a peaceful mind.
This must be incredibly difficult for you . And yet your videos are humorous at times and kind. Any one of us in our late 60's early 70's could be in this position at one time. By sharing your story your helping some of us prepare for and understand dementia more. Cheers from Northern Canada.
As a family we went through this with my father in law. It started sometime many years ago but his decline worsened rapidly after he suffered a TIA or possible stroke. My mother in law tried to keep him at home as long as possible but at some point he became angry/argumentative/and they began to physically fight. Shortly after we found out about this we investigated senior care homes which in our area of the US are not exactly advanced facilities. He lost his battle with dementia after contracting Covid and pneumonia in February 2024. My prayers to you and Heather. It’s a devastating disease which has such stigma attached to it. I have so much more I’d say but you already understand everything as it is your daily life. I think of you two often. Prayers and light go out to you from South Georgia in the US.
By far, and I haven’t finished watching, this is the most informative video ever! Thank you for sharing. God knows, He sees you.
Matthew 25:23
So heartbreaking. You are doing great with Heather, taking it as it comes, with a lighthearted touch. Although Heather can't express it, she knows you are there for her. ❤
You are doing a wonderful caring job. Please remember to take care of yourself. Get a respite when you need and accept help when offered
I have no words just compassion for you both. You sharing your journey with others has to help other people for sure. Bless your heart for having so much patience.
Although my husband is much older than Heather, his dementia early signs were much like hers.....ie: asked me to pay the bills and write the checks; was happier if I was driving...]to the point where he could no longer drive without getting lost] etc. Although the signs were subtle in 2020 they became glaring by 2021. It wasn't until August of 2022 that we met the neurologist and received the diagnosis. What a journey it has been and even tho my husband is now in MC, I visit him every day and the worry/grieving and sadness is still profound. I love your videos. I esp love this one. Thank you for taking the time to film it for us to watch. Your channel provides me with so much comfort watching someone else going through the same as me.
The progression of her decline was so fast! Sounds like you are doing a great job of taking care of things.
God bless you John.
Stay strong brother. Went on the same journey with my Mother in-Law. In the end, death was a release for her and for my wife and myself, 8 years from the initial diagnosis. Truth be told she had been gone many years before she finally left us. If there's any consolation for us she never got know the grief that her husband of 60 years had already left us. Stay strong...
Very interesting. I’m so glad you covered this. As older couples we question each other when we forget something or make an odd statement. We just never know but hearing you say that she was making mishaps every few days was a clear sign. Thank you for sharing.
We're all rooting for your family and our sending our heart felt wishes your way. I really appreciate all that you share, I'm in my early 70's and my husband is 4 years older and both of us have members who died from dementia. When we remodeled our house 7 years ago we added a care giver apartment just as insurance so we could stay home till the end of life should we have a debilitating illness. If I'm ever in your situation I hope to have the kindness, patience and compassion you do.
It's a devastating diagnosis. It's so touching when I see her talking. That was the Heather you've known for such a long time. She was aware there was something wrong. It might be a strange thing to say, but maybe her condition softened the blow. it really is dementia. I've seen people with dementia who turned very angry. Like their personality changed. Heather is so sweet. Thank you for your video's. They say people live much longer now. But more people will suffer from dementia. So it's good to know how to treat your loved one who is getting more and more incapable of doing things on her own. We have to learn to be patient and lower out expectations. We need to learn cause it can happen to anybody. You didn't ask for it but you're our teacher. That's a gift. Thank you. ❤ for your family.
Oh my goodness. You are such a kind, attentive, caring man. I’m so glad you are there for Heather. I’m soaking in as much information from you as I can. I’m so appreciative of you sharing your experiences with dementia. We are helping to support my father in law, he’s in the early stages of dementia right now. I’ll keep you & Heather in my prayers. God bless y’all. From Georgia (my name) in the state of Illinois, USA. XXXOOO 🩷
I so much agree with your kind approach with Heather. Our acceptance of the decline is absolutely necessary to enable us to be good caregivers.
The beginning stage can be the hardest because we don't really know it's a disease yet. We can think the person is disrespectful, careless, or even rude. It's so important to tune in to our loved one to identify when behavior is not their 'norm'.
I am so surprised at how quickly Heather's decline has occurred.
Taking time to convey to all of us your experiences is so helpful to so many of us. I pray your strength and perseverance continue.
Your wife is very lucky to have you as her husband and make sure you take care of yourself and get some time for yourself💕
Thank you so much for taking the time to do this particular video.
I can sure see why she focused on aphasia, when she understood what aphasia was, instead of dementia. And I guess it’s a blessing the very disease she had kept her from worrying more than she did.
Regarding the “talking head” aspect of this video, do not worry about it! I don’t think any of us subscribers are here for fancy editing. And at least in my opinion, you do not go on too long or repeat too much.
Take care and see you in the next one.
John I recently came across your blog and am now a subscriber. I think your approach to this difficult situation is absolutely remarkable. I feel for you both as well as your children, family and friends. It's like a slow, insidious loss of your loved one; albeit not so slow. I'm quite sure that you are helping so many people who are in similar situations, which is commendable. I like your statement about this being palliative care. That word is most often associated with cancer but it is completely appropriate for dementia care too. Your intelligence shines through in the way you frame all that is happening. You are a wonderful husband and a remarkable human being. Please know that people's thoughts and support are with you. YANA right back at you❤
Excellent perspective on Heather and your journey. You mentioned you were going to edit the video. The video, as is, is very informative and gives a timeline. Amazing how quickly Heather has declined. I applaud you for your courage to Keep It Simple. Sounds easy but it’s not.
You're doing a great job. You summarized it so well: keep your loved one safe, clean, fed, happy. She will always know that you are a loving safe person, even if she should get mixed up about the relationship. God bless you.
God bless you all. We all have something wrong with us, it's called "the human condition". We all live, we all die.
I'm very old, I'm very blessed, I don't worry.
John, our family is having a very similar experience with our mom. Her first symptoms were having a hard time finding the right works, and eventually having a hard time following conversations. It took a long time to get the right diagnosis of PPA dementia. Like your Heather she is very precious to us and it is our goal as a family to keep her with us here on our family farm. My siblings and I work together to care for her as a team. So we can support each other as we move through this process. I hope you have a good support system, and I wish you well. It seems like your Heather has always been a beautiful soul. She is blessed to have you as her life partner. Take care , and thank you for sharing your journey.
Nice explanation. It is palliative care. Take care of yourself!
You were very wise to keep a journal of things! I'm sure that was helpful for the healthcare workers. You painted a picture of what you both were living with day to day!
You are an amazing man, John, as I am sure Heather is an incredible woman. You are fortunate to have one another. And we--your audience--are blessed as well. Dementia is a disease that will affect all us baby boomers. All of us. We will either be afflicted with the disease ourselves or find ourselves caring for a loved one who has been bowled down by this illness. Maybe both. Thank you for showing us your unfailing ability to love, to be there for Heather in every way.
As we age many of us who do not have a partner wonder what will become of us. John, you and Heather are bound together and because of that you know her heart. She is so blessed to have you and YOU are blessed to show her your undying love. We all thank you your sharing of this life which enriches us all. God bless you both.
Thank you, man. Watching your videos is a heartfelt education.
so my better half works with the elderly, mostly dementia related, here in mtl. she's been doing it since before we met 12 years ago. i hear the stories but most, if not all, have a missing link. the question i always wanted an answer to was, " how this must affect those closest to the person suffering with this illness. i thank you for shedding light on this topic and clearing up a few things for me. i have only seen 2 of your videos so far but have subscribed. you seem very much like someone i would love to have as a friend. Heather is lucky to have you. most of the stories I've heard from my wife do not include someone like you. its truly unfortunate that you have something to be very proud of that is probably the last thing anyone would want to be proud of. that is, of course, taking care of a loved one, as you seem to be doing, under very difficult circumstances. i will keep watching because i believe that your story is equally, if not more, important than Heather's. you're right, you're not alone. this guy in mtl, that is so far, only indirectly touched by this horrible illness is watching you and is thinking of you.
You truly are a hero. Your Heather is such a beauty and her smile still lights up a room! I so appreciate your sharing to help me deal with my cousin who is now aphasic and no longer ambulatory. He's quite a bit younger than me and it breaks my heart.
You are brave, honest, and not alone, we are some of the millions of caregivers who realize how hard life is for us during this journey.
You are an incredible person John! Stay strong!