I have early demitasse. Diagnosed 2 years ago. Won't let me drive. My son pays my bills other than that... things are good. Don't know how much more of this time I have. I know it won't last forever. God bless and keep u and your wife. You are special sir.
The difference in 36mths is extraordinary! She's so young, and honestly, as I watch this I can't help but be shocked by how quickly she's lost ground. Caring for her would be a 100% full time job. Only someone who loves you would take such good care of you. She's so fortunate that she has you.
@@eastcoastrabbit4474 you are right about that… The speed at which this has come on is absolutely staggering and breathtaking. It’s been a hell of an adjustment process, and only through a lot of tears, grieving and letting go on my part have I been able to keep my head screwed on straight. We met when we were 15 so it’s been 46 years. That’s a very deep well of love to draw from to find the internal resources and strength to provide the best care possible, and that’s my commitment to her. Thanks for your comment, I really appreciate it.
You are doing an amazing job and showing the whole world a beautiful example of true love trust and compassion. I hope you are remembering to take time and care for yourself as well. You are a very important person too Heather would want you to make sure and take a break for yourself sometimes. (:
How do you define young? I am sorry, but I had to laugh when I read that. Remembering my grandma. She called me on my 35(!)birthday and said: congratulations, now you are an old woman like me 🤣🤣she was about 81 then... So since then we were old ladies together 😂seems there are some different definitions to that, I guess... 🤔
Those vows mean nothing if your health as a caregiver is in danger. Don’t say it wont happen to you! Those vows mean nothing if she can get up and wander around while you sleep or can get out a door or window to the neighborhood.
My mom had severe dementia at a fairly young age, and my father kept her at home for the first 5 years. I just want to say, I don't know how people like you deal with being a caregiver like that every, single day. I stayed with her for a few hours one time and thought I was going to go crazy. To anyone who takes care of a spouse or loved one like that, every single day, you are a hero, even if no one ever tells you.
You could do it if that person meant a lot to you. A friend lived with us for 10yrs & saw the decline in the last 3yrs. We had medical issues & could no longer care for her so a family member finally moved her to their home. She passed Oct 2023😢
I'm so very sorry. I know exactly what you're going through. My husband just passed three weeks ago, July 6, after a long heroic fight with FTD/Alzheimers. I was his 24/7 caregiver for many years. We knew he was having issues starting back in 2010. But he wasn't actually officially diagnosed til 2017. His mom and brother both died of Alzheimer's. He was ambulatory and verbal and continent right up til pretty much the end. He never felt like he was anything other than "just fine". We took long walks every day and just eeked out every precious moment that we could. It was a long grieving process all those years but even with all that time, my grief now that he's gone is overwhelming. It's like time has stood still for me but has passed for everyone else. And after having him as the focus of my life for 44 years, keeping him safe and helping him in whatever he needed, now there's this huge void. I know in time I'll begin to move forward to my next chapter... Just wanted to say I'm so sorry. 💔
First of all, I’m very sorry for the loss of your husband. It sounds like you and he had a life path very similar to myself and Heather with all of those years behind you. It’s very interesting to hear how things panned out for the two of you, and it does sound like the best possible scenario, especially when compared to how much some other people struggle taking care of a loved one. I’m hoping that this path I’m walking with Heather will unfold in a similar way. Thank you so much for writing your comment, I really appreciate it hearing from you and I wish you the very best.
You my dear are most amazing. I just stumbled upon your comment here and I know that it's been a while now but I truly hope you are doing well and moving forward with your life. I just really wanted to wish you the most joy and happiness for the rest of your life.
Your love for Heather is beautiful. My mum had dementia for about 7 years, she died in 2020 age 79. My dad took care of her, like you he was loving and patient, even when she gave him a black eye (she went through a stage of being aggressive -which thankfully stopped). It is such a cruel disease, when you should be enjoying life together instead you are alone, and looking after your person 24/7. You can’t discuss it or share the responsibility with your person because they’re not able to understand. It’s like they died, but they haven’t died. The only thing that softens this situation is love. Loving someone through dementia is hard, because they’ve changed beyond recognition and you don’t get loved back in the way you used to, but lm certain somewhere inside Heather is her love for you and lm certain it’s as real as it ever was. Even when mum’s vocabulary deteriorated to just a few words, she still occasionally managed to say ‘l love you’ to my dad. Thanks for making these vlogs John, they are honest and helpful. Take care of yourself too.
My husband was diagnosed with dementia two years ago. When he asked me the same question for the 10th time , I just answer like it was the first time. I question myself everyday. I try not to get too tired and aggravated. It’s just so hard to see him this way. I am his safe haven, which means I have very little alone time. He doesn’t like me to be out of his sight. It’s difficult because he knows he has memory problems. I have learned to not worry about the things I can’t control, but focus on what I can do for him. I’m so glad I found your videos. This will help me be more understanding.
I mother used to tell me "I'm going crazy", of course I told her no. She also got angry when I came home from work (I had a caregiver) because, after my father died, she never wanted me out of her sight. She'd yell at me and then give me a big hug.
Hello John. I just found you. My husband has Parkinson's Disease with dementia. I feel comforted by your words and your attitude. I am now subscribed. I will talk to you again.
I've only just discovered your vlog. We're at the top of the iceberg at this.....and I'm learning so much from you. It was the day after the presidential debate this year, and this topic became the hot topic, right? That's when I got a panic stricken call from my daughter that she'd just received a text from her father needing a ride. He had lost his car. This was roughly two hours before he forgot how to use his cell phone apparently. My daughter coming back from the ocean with her family. Three hours away. Until this episode we were not sure....there had been signs but you pass those off and hope for the best. That's how new this is for us. I'm appreciating all the insights you have. Our situation is complicated by the fact that. I'm 70 and we've been divorced since I was 40. Although we have kept contact. This is huge for my daughter, and his family is adament that he not go in a home. However, they are not willing to assist nor see him at all. At this point my daughter and I are splitting daily visits....a thing I do for her, not him. Not being cruel here. I'm not even sure I'm welcome, but he needs watched and my daughter has two tiny children and a house not large enough to move him in. You are like a beacon of hope and resources. Already I sent her your photo of the clothes dresser thing you made. Kudos ..... You're very encouraging. Thank you.....
@@JohnvanGurp ☺️ laughing here. It doesn't help me personally to know that I finally was able to retire June 23 of this year. At 70. I kinda expected to be celebrating or something. Not does it help that his sisters all call my daughter complaining that my daughter needs to up her game. Now she and I are standing this.... she is doing all that she can. And while these women only live an hour away, they have yet to commit to any physical time or visit. Just their criticism. I'm probably no longer family to them, so I'm not getting the complaints. But I have the most sensitive and caring daughter. She's struggling to be in this together for her father. But the guilt they are giving her is hard to watch. It's why I'm doing everything I do. For my daughter. If you wanted to give a perspective on your vlog. To answer the question....how does the caregiver deal with perhaps well intentioned family members like this. I believe they only hear her father's pleas of no care giver....no nursing home....without understanding the enormity of the problem. You have your sisters help. I've seen it. That's so awesome. He has sisters close enough to help....but aren't doing so. The question is...how do you either encourage them to decide a plan wherein they visit once a week....or? At the very least slow down the criticism of the care giving daughter. Would it be appropriate for me...as her mother....and as a person who is visiting their brother three to four days a week and so proving my concern for him....would it be appropriate to approach them with ideas they might be able to help with. Polite and kind. I'm not mean spirited. But you are such a fabulous care giver and do seem to have bridged the idea that it takes a village and respite for yourself is part of upping your game. I'm using that phrase because two of the sisters used those exact words on my daughter and after all she's done so far, she was shattered. What do you think? Maybe other caregivers hear things like this? Maybe not and I'm asking too much. As I say....we are new to this.
@@kathyvickman9203 I hear you. You know what I can do that my help is make a video describing the system I used to call up for help, and how I interface with people who want to offer help. I can just share what I’ve gone through and maybe it will help you in some small way.stay tuned, I might be able to do that tomorrow.
@@kathyvickman9203 would social services get involved, to do a care needs assessment of him, as a vulnerable adult ? who is next of kin. anyone can report a concern for welfare. all the best.
You are doing a great job❤ my parents had me in there 40's so i took care of my dad for a year, he had alzheimer's when i had 3 year old twin daughter's to take care of. It was so hard but so glad i did it. Then later now my daughter's were just getting out of 8th grade and my mom moved in with us. She lived with us the last 6 years of her life passed away at the age of 94. The last year she was full care in a wheel chair. It was the hardest thing i ever did in my life but she passed away with us in our home and i would do it all again. Sometimes i would cry when id have to get up with her all night long but god always heard my cry and he gave me strength to go on. May god bless you every day ❤😊
Hello John. I stumbled across your UA-cam videos just a few days ago. My husband has recently diagnosed with Alzheimer's so we are just beginning this journey. Thank you for posting your videos. They are very helpful.
Best wishes to you going forward… It’s a struggle, but if you reach out for help from the Alzheimer’s, association and friends and family, it’s manageable. Stay strong, you’re not alone.
First time watching your channel,and I had to click on the subscribe button! Love how you want to keep things light and with some humour❤Humour and MUSIC and art you can touch,and a loving husband like you.... Love is all around us❤
My mother has had dementia for maybe 10 years. My dear, sweet hubby died of Lewy Body Dementia w/Parkinson’s. Diagnosed January 2017. Noticed something very significant Christmas 2016. Very significant. He died March 28, 2022. We had hospice, but I had to put him in local nursing facility last 5 days of his life. He went peacefully, our lives during his LBD years were mostly 24-hour sundowning, delusions, seeing and hearing things and violence. This was not my husband. I miss him every single day. Keep up your great caregiving skills and technique.
Having experienced this with a grandma and mother-in-law, I learned to meet them where they are. I mourned their loss long before they passed as over time they became complete strangers in their own bodies. It was a slow fading away of who we once knew. I told onto and cherish all the wonderful memories. I am praying for you both. May God’s peace surround you.
Your beautiful wife is still just as lovely as ever. Amazing how fast this illness comes on. My Mommy passed when she was 77 after about 3 years in a rehab facility. I read as much as I could about dementia & condensed it down to "Just remain calm". When she could still talk I'd ask her about her high school days. Amazing how much she could recall when she couldn't even remember who I was. One evening she was resting and suddenly said "Who ever thought I'd end up like this"? I miss her so much, I can't wait to see her again. God bless you for showing us what love is.
John - you're doing great taking care of your wife - Heather. You're a caring husband. My cousin is only 62 and she was diagnosed with FTD in May 2021 and I can't believe it's already been 3 yrs with this terrible cruel disease. We can only take it day by day and enjoy as much as we can with our loved ones. God bless you and your family and much love and tender to Heather.
I remember you both at my 50th birthday party, November of 2020. What a difference just a short 3.5 years make. Thanks for sharing and take gentle care of both Heather and yourself.
@@sonyawinterberg9278 thank you Sonja, I have very fond memories of that evening as well and the warmth of your company and the company of your friends. Unbeknownst to us it had probably started then already. Well, that’s the way it goes. I really appreciate your support, and your comments and that you reach out. *hugs*
"...we're going to get through this together...the end is going to be sad and tough...but we're not going to have a tough time during the journey...we're going to try to make it as good as possible." Thank you. That helped me.
You are doing a wonderful job of taking care of Heather as she progresses. Your compassion, upbeat manner, and consideration get through to her, and make her journey smoother. Thank you for sharing your heartbreaking account.
My husband was diagnosed with bvFTD 6 months ago but has been symptomatic for 2-3 years. He is deteriorating rapidly and although he is able to communicate, he spends his day walking, pacing and eating. He no longer expresses love or empathy to myself or my 3 children. I am already a widow. Thankyou for sharing your story, you are coping far better than I am.
I'm sorry for what you're going through. I wish this cruel disease didn't exist. 😢 If you ever need to vent you can reply to this comment and I will lend an ear. 😢❤
My mother-in-law is 95 and lives in assisted living for other reasons. However the past two years she's had onset Dementia. She remembers the past perfectly which is a blessing. Phone conversation is hard or talking about the present is hard. Everyone is so different in how they experience Dementia. Heather is lucky to have you. Thanks for sharing your experiences.
My mother and I went through this with my father. I adored him so much. We used to sit together for hours talking. It was so hard to accept it when he couldn’t communicate any longer. He came to me in a dream a couple of weeks after he passed. He looked young, was laughing and hugging me, talking to me. I treasure that dream so much. I look forward to seeing him and my mother in heaven. My mother went through a short period of dementia about a month before she died. She had been falling and those falls caused her to be confused. I was grateful she didn’t have a long term dementia like my father did when he died. She passed peacefully. I loved both of my parents more than I can begin to express. I will see both of them again in heaven. My father died of Alzheimer’s. There was a big difference in their illness. Mom’s was very short. Dad was sick for several years before he passed. It is so important for the family to be there to help when going through this disease with a loved one. My mother and I leaned on each other and my children were a lot of help. My son and daughter were there for support when mom died. Stay close to your family as they go through this. It is so hard and their support is essential.
Your mother was lucky. So was my grandfather I'm so glad he didn't have to suffer like so many do before his hand was finally taken. It's hard to lose a parent, peace to you.
@@katherinechatham9032 that helped me believe it or not. In fact I have tears in my eyes as I write. That you relied on your mom and that helped you. See? I have little attachment to my ex. For me, the whole thing is about trying to get my adult children through life. And this thing with their father is life. I feel good that I can watch TV with him and see that he's coping. But my worry is my daughter who is struggling with a three year old and seven. Giving her father all she can...and? She calls saying her brain is spiraling. I get it. I'm old enough to have lost my parents. My heart breaks for her and there is nothing I can do to stop it so I do what I can. That you have find memories of your mother doing what she could to help you....or you help her. It makes me feel I'm doing the right thing.... sometimes in life. That's the best we can do. That's me for now. Hoping I am leaving her with the knowledge I love her.... that's the best that I can do
Thanks for sharing this John. It is very hard for people to imagine what the progression of the disease looks like. I love that you both maintain a sense of humour.
Thanks for doing these informational videos, it’s probably difficult at times but I do find them so powerfully helpful. I’m 74 wife is 76, her short term memory has had significant problems just starting 3-4 months ago when she had COVID for a month. It is getting worse rather rapidly, I’m in shock. But we can’t even get an appointment to get diagnosis for nearly A YEAR ! You are helping me understand the situation and what’s ahead… and your grand attitude! Wow! I can only hope to emulate your positivity and kindness over the rocky stretch ahead.
I had a severe problem with short term memory after having Covid. I was so sad because, as a nurse, I knew that this could be the end of my independence. So, the day before I called a neurologist, I did a Hail Mary: I FASTED FOR FOUR days then ate only meat for one meal a day the rest of the week. I was in keto acidosis. After one week, my memory was back. Completely back.
It's so beautiful that you're doing this. I work in dementia care and not many people have the patience and understanding to give care at home. She married a saint. God bless you.
I was watching your past videos and the very first picture of Heather in 2006. This disease is called the long goodbye. She is a beautiful woman inside and out. I attended meetings upon meetings in person and online to help me cope. John, you are an inspiration to those people going through it. There is another couple on YT, they are in their early 50's and the husband has a form of dementia. This disease affects the whole family.
@@deedeew4040 it’s so very many people seem to be touched by it, in all walks of life. It truly is devastating to families and victims. Thanks so much for your comment, I appreciate it.
I just found your channel, I appreciate your videos. I am also caring for my spouse with dementia since 2021. That is when things got harder. I’m leaning on the Lord for my strength to get through this season. You seem to have a good outlook on it. 😊🙏
💚 You seem like a wise and loving soul. New sub. I suspect I'll learn much from your channel, and encouragement too. Perspective is everything. When i was a brand new 18 year old nurse assistant during college, i worked in an assisted living facility and there was a bedridden women we cared for, with no verbal communication and appeared to show no understanding of her surroundings for the most part. Her husband came every day and spent the day with her. I asked him one day if he felt she knew he was there and knew who he was, he replied "It doesn't matter. I know who SHE is." I learned a great lesson from him. Part of me regretted being so forward but it helped me be a better nurse. He opened up after that, teaching me about her life, bringing pictures. Perspective is EVERYTHING.
This must have been a very difficult video for you to make. I'm so sorry for you and Heather. Dementia is an awful disease. My Dad passed away from it in April after being diagnosed about 5 years ago
We went through this with my mother-in-law. She has Alzheimer’s and dementia. It took her in about 9 months. So hard. And it changes them so much. I’m so sorry that you and Heather are going through this too. What a terrible and robbing disease! No fair!❤❤❤. Hang in there guys!🙏🏻❤️🙏🏻❤️🙏🏻❤️
John, I feel for you so much, having lost my wife 7 years ago to dementia and lived your life for five years. It’s hard to watch your videos, but I do because I try to send you support for whatever it’s worth. Your journey now was my journey then and I think of you often, hoping that you find peace and that you are not alone. Take care of yourself, and thank you for sharing this. 😢
I'm a caregiver in Colorado. My best friend has frontal dimentia. I feel that the disease has stolen her away. I grieve everyday. I know that in the end she'll be free. No more fear or frustration. She'll be safe then. Take care John. I know how hard this is for both of you❤ patti
I can’t imagine how you can handle all this. I know it has to be so so difficult. You’re a wonderful husband. You’re a good man and it just shows all the love you have for her and I’m glad she has you stay strong. Keep your chin up. you’re in my prayers and your wifeand I hope today is going to be an exceptionally good day
My aunt had Alzheimer’s we found her listening to her favorite music helped her. I know you’ve probably tried it. Just putting it out there for others whom might have to deal with this disease.
As well as having lots of "chemo brain" symptoms develop, my mom-in-law became completely unresponsive for a week or two towards the end of her life. But I sat beside her and hummed an old Welsh tune (her early childhood was in Wales) and to my surprise, she "hummed" along in a gravelly dry voice. Naturally we used that song at her funeral. The power of music is amazing!
John...i just found your vlog. I just cant imagine the torment of loss in your situation. My hubby died 5 days after his head injury and that was a whirlwind of grief that took me a year to comprehend. Its been 12 years now so i survived. The loneliness at 77 is not good. You are doing great...taking it hour by hour...day by day. Your lovely wife is still alive...you can talk to her...touch her. Hold it in. God bless you both. None of us realize this could have happened to us yet here we are. Easy does it. Take care. Peace!
I just found you, John. I’m so sorry for you both. My dad had Lewy Body dementia for about 6 years before he passed. Now my sweet husband is having difficulty. We have an appointment with a neurologist next week. I’m sending you prayers from Texas. 🙏🩷💙
As you say its pretty dramatic. I have been a clinical researcher all my working life and worked on an Alzheimer's Disease drug in clinical trials. However the speed of Heather's decline over that 3-4 years is hard to see in this video and must be very tough for you to watch as her partner too. Its hard to imagine being lost inside your own head but your videos do show that well. You are doing a good job and sharing helps people understand all the types of dementia.
This has to be so hard sharing this. You have such a good spirit (soul). You emit kindness, compassion, empathy, love, understanding, strength and so much more. Your eyes kind and giving. Stay strong and take care of yourself too.
John, new subscriber here. I'm so sorry you have to go through this. It was very informative to see clips of Heather from 3 years ago to now. My sister was diagnosed 6 years ago with "cognitive impairment". At that time, I didn't realize that was a precursor. She lived an hour away from me but I called and visited her as often as I could. We'd go out to lunch and she'd ask, "What are you having for lunch?" I told her what I was ordering and within about 3 minutes, she'd ask, "What are you having for lunch?" It finally hit home to me that this situation was not going to improve, and that it was declining. I continued to call and visit as often as possible until she passed 5 years ago. I miss her so very much. It doesn't hurt as much now, but it still makes me sad. ♥
I applaud you for doing this without help. My mother was in her mid eighties when she had to be placed in a dementia unit. My father was caring for her but she was now in year five of being diagnosed and elopement was a problem. She lived three more years once she went to an amazing facility. My father is now 92 and thriving…he cooks…drives…does laundry…has fully adjusted to living alone. I live three miles from him….talk several times a day.My mother died last year at age 89.
Wow. Such grief. Remarkable love and devotion. Remarkable attitude. Remarkable that you have documented your difficult journey together and use it to encourage others not to give up. Bless you and Heather.
❤❤ Your videos are masterful! My mom is 82 with dementia. It is very sad to see a brilliant woman mentally dissolve day by day. The only solace is she had a great long life. Early onset dementia is devastating for the loved ones especially.😢😢😢
I’m sorry for you as a caregiver of someone with dementia. I heard owe time dementia being named the long goodbye! This is the first video of yours I’ve seen and your an amazing husband and I hope you make time for yourself. 🙏🏻💕
I went through this with my mother. You are being a great partner to her and must get out and get breaks whenever you can. It’s a long grieving process for what was and can never be again. I’m a widow and know loss as well. Bless you.
Heart breaking. My 89 y.o. mom was diagnosed with Vascular dementia 2 years ago. But I saw signs LONG before. Just placed her in Assisted Living after caring for her for 11 years, the last 6 and mostly last 2 being the worst. It's crushing. ❤ But it's horrible because your wife is so young. Bless you and your wife.
Wow! Thanks so much for sharing such a private part of you and your lovely wife’s tribulations. I have a friend going through this but she is so reluctant to share and I don’t want to pry. Your video gives me a teeny taste and sense that I would have otherwise just had to guess at. I’m praying for you, your wife along with my dear friend now. Bless you 🙏
Thank you for sharing. Retired nurse here. I worked nursing home for over 20 years and I just loved it! God Bless you ♥️. You have a wonderful attitude and it looks like you have it all figured out. I am going to follow your journey now. 💕
Dear sweet John & Heather, I'm glad I happened across your video. I'm Grace and I've been working with dementia and music for some time. I've seen such lucidity after sessions with clients, if only for a short time. Ive also seen fun, laughter and emotion! ❤ Have you a good dementia centre near you? Could they provide a one to one music/art person to help with sessions at home? Does Heather like music?? It's like a miracle sometimes. I used to find the "key" to my clients.. there's always something that still "gets them"! I'm sending love and a big hug from Wales. ❤
Great to hear from you. Yes, Heather goes out three times a week to the day program and one of the workers there is a folk musician who plays fun, Beatles and other recognizable and familiar tunes. I also play some guitar and sing old songs here at home and it brings us both joy. Big hugs right back to you, and thank you so much for commenting.
@JohnvanGurp oh fantastic! I had a feeling you would have something wonderful organised!! Sending warm regards and I shall have a look through some more of your vids. I'm thinking of returning back to working in this field soon. All the best. X
Hi John and Heather, watching your video brings back memories, my partner was diagnosed aged 55yrs with FTD, he passed it will be two years September, he also did the walking with purpose only known to them, constant walk around the house, let me tell you, you must keep your sense of humour its so important. Take care both.
John, I am so sorry for the painful changes that Heather, your dear wife, has been suffering. I am living with a similar progression of my husband's abilities after his diagnosis in around 2021. But Heather is young, which must have been harder and more painful. You have an amazing channel. I have been watching many youtube videos about dementia and have visited many sites but never came across one like yours. I just saw about three of your videos today and I was looking forward to meeting Heather. This video was very special and poignant. Indeed, Heather is blessed! And we are all blessed at the same time as you share such practical ideas and helpful resources! May God richly bless you and Heather!
So many people give up on people at the drop of a hat and then I get this video as a "for you" video and I have to tell you, you are amazing. Not only have you never given up, you try to keep everything light and as positive as possible, for her. I hope it helps you to get though the day as well. Maybe that is a key to those of us dealing with a close family member who is in the throws of dementia. I look forward to your future videos.
Thank you so much for that positive feedback. A while ago I heard another husband talking about his wife’s advancing dementia and that it had started into incontinence. He said “I didn’t sign up for this”, and all I could think of was, I did. I did legally sign up to be there for her for better or worse and sickness and health, and I take that stuff seriously. I hope my channel helps you and I wish you the very best going forward
You’re quite amazing‼️ What an example you are of how to care for a loved one in cognitive decline…from how you treat Heather to your demeanor and grace. Such a strong and beautiful example to emulate for viewers who are going through the same struggle. Your vlog will be a source of inspiration to many‼️
This is the first video of yours that I've seen, and it's very moving and enlightening (and kind of uplifting) at the same time. You're giving her a safe, soft space to move through and that's no small gift. It doesn't have to perfect or selfless (because your life matters and it's a grueling struggle to show integrity in a battle that can't be won). I appreciate you and this content so much today, from one caregiver to another. Thank you.
@@leewilcox5261 what a kind comment you have made here… It really helps me to read this type of stuff. Thanks for taking the time, I really appreciate it.
So sorry to see you both in this awful situation. My mother in law had dementia. We kept things light and silly but it is exhausting. Be kind to yourself xx
Just subscribed sir….. you seem to be a wonderful caregiver and I’m sad that this illness has come into your lives, love from you to your lovely wife is I’m sure unconditional, tested at times yet still strong
What an amazing example of living your marriage vows. A true blessing and legacy for your family and others. You both are a light in this crazy world. All the best to you and yours
11 years caring for father in law. 6 years with step mother. Sense of humor is most important. Both situations so different. I can see my own progression. No one else suspects but I journal about it. I’m a capable, volunteering, community minded, above average IQ person so can fake it easily but I see my mental deterioration. I try to remain active and maintain forward progress with humor and understanding of my own flaws.
@chrissieclapp8007 Thanks for sharing your situation. Like you, I am a "capable, volunteering, community minded, above average IQ person so can fake it easily" but I am beginning to have some anxieties about my mental capacity. I have been counting on having a large volume of 'cognitive reserve' but at 67 and with dementia in the family.... I do worry as I am on my own. Are you aware of any support structures for people like us?
Thank you John, this was very helpful and I hope it was for you. It's absolutely still hard and you will get through it together. She will be blessed to have you caring for her until the end, as you would regardless of the reason.Please reach out to your local resources too. Much love and care to you both!!
Love the way you are dealing with this terrible disease. My mother was diagnosed at age 60 and I was 21 in 1979. My dad, sister, my aunt and I went on a 14 year journey. It was not easy but our love for my mother drove us. My mother has been dead for close to 30 years now; and I proud of the journey we took together.
Yes that grief is an ambiguous kind. Your spouse is still there but they are gone. It is a roller coaster. My husband’s started with an infectious brain injury which was nearly fatal. He was on life support and in facilities for four months. That was in 2010 and he was 52. Since then he has rallied then the slow decline into mixed dementia started to appear. He was a brilliant architect with a master’s degree from Rice. I have been his caregiver the entire time. Like you I was blindsided at first, but have found peace and acceptance and try very hard to take one day at a time. I enjoy sitting in nature,gardening and playing with our dogs. I have found an independence over these years which has made me so very strong, and have discovered many things about myself that I never knew, and that in itself has been vastly liberating.Love to you both. ❤
So sad to see her before and now. You have a wonderful attitude about your wife. She is lucky to have you. I watched my mom go downhill. She was this new paranoid, angry, mean spirited person who blamed all for her short comings. Wouldn’t look after herself. Wandered. Forgot how to answer a phone, use a channel changer, or who people were. I was also and still am caregiver to my adult autistic son and now my husband who needs reminders to eat, take his insulin/ meds and sleeps most days away. People say to me how do you do it? It’s my life. Doing the best I can like you. Try to smell the roses and enjoy my normalcy with my friends. Thank you for sharing.
John, I just happened upon this video. Wow, this is a very aggressive form of Alzheimer’s. If that’s what it is. Stay strong in the Lord and He will see you through. You and Heather will be in my prayers. It’s quite a heavy cross you are bearing, but not alone if you ask Jesus to help you. It will be hard but also a privilege to be with her along this journey to go to the Lord. Thank you for sharing. I pray strength and love and humor for you. God Bless.
John, I appreciate your vlog so much. You are handling this hard situation so gracefully! My sister has dementia. I don’t have access to her medical records, so I can’t tell you what type. I just returned from traveling to visit her so her husband could have a break. We had to cut the time short due to her extremely hostile and angry reaction to my presence. I don’t know why she reacts this way, but it is very sad. My heart hurts. Watching your channel has eased my feeling of loss some, and I appreciate what you are doing. Thank you!
Hang in there, being a caretaker is one of the hardest trips anyone will ever take. I truly respect you.
I have early demitasse. Diagnosed 2 years ago. Won't let me drive. My son pays my bills other than that... things are good. Don't know how much more of this time I have. I know it won't last forever. God bless and keep u and your wife. You are special sir.
Take gentle care, I wish you the very best going forward.
Just wondering if you are totally alone or do you have family members that can help you. My heart goes out to you both. Sincerely
Take care Kathie, thanks for sharing your story. I'm glad your son is there for you.
@@kathiecopeland5169 keep enjoying life Kathy. We are all rooting for you
I guess you mean that the cup is half empty.
The difference in 36mths is extraordinary! She's so young, and honestly, as I watch this I can't help but be shocked by how quickly she's lost ground. Caring for her would be a 100% full time job. Only someone who loves you would take such good care of you. She's so fortunate that she has you.
@@eastcoastrabbit4474 you are right about that… The speed at which this has come on is absolutely staggering and breathtaking. It’s been a hell of an adjustment process, and only through a lot of tears, grieving and letting go on my part have I been able to keep my head screwed on straight. We met when we were 15 so it’s been 46 years. That’s a very deep well of love to draw from to find the internal resources and strength to provide the best care possible, and that’s my commitment to her. Thanks for your comment, I really appreciate it.
@@JohnvanGurp I love how you love her. You are an amazing husband, and Heather is an amazing wife!
You are doing an amazing job and showing the whole world a beautiful example of true love trust and compassion. I hope you are remembering to take time and care for yourself as well. You are a very important person too
Heather would want you to make sure and take a break for yourself sometimes. (:
How do you define young? I am sorry, but I had to laugh when I read that. Remembering my grandma. She called me on my 35(!)birthday and said: congratulations, now you are an old woman like me 🤣🤣she was about 81 then... So since then we were old ladies together 😂seems there are some different definitions to that, I guess... 🤔
@@fredek1391 your granny is funny… 😊 I feel like 60 is young when it comes to dementia. It’s the sort of thing you expect of 80 year olds in my books.
Heather is blessed to have you as her caregiver.
You are the epitome of what wedding vows mean, to love and to honor, even in sickness. May God bless you both and give you strength and peace.
Those vows mean nothing if your health as a caregiver is in danger. Don’t say it wont happen to you!
Those vows mean nothing if she can get up and wander around while you sleep or can get out a door or window to the neighborhood.
I can’t imagine how hard it was to even make this video You are a true hero
My mom had severe dementia at a fairly young age, and my father kept her at home for the first 5 years. I just want to say, I don't know how people like you deal with being a caregiver like that every, single day. I stayed with her for a few hours one time and thought I was going to go crazy. To anyone who takes care of a spouse or loved one like that, every single day, you are a hero, even if no one ever tells you.
Thanks John,My wife of 58 years has had a diagnosis and I have watched all of your videos.Your advice is very welcome..I admire what you are doing.
@fernmo I appreciate the kind comment and support. Hang in there, I hope you’re doing OK.
You could do it if that person meant a lot to you. A friend lived with us for 10yrs & saw the decline in the last 3yrs. We had medical issues & could no longer care for her so a family member finally moved her to their home. She passed Oct 2023😢
Such a tragic disease. You do an amazing job. The saddest day I had my mom looked at me & said, “I don’t know who u r, but u make me laugh.”. ❤
Aw, I think that is a sweet and heartwarming comment from your mother. I would cherish that.
I'm so very sorry. I know exactly what you're going through. My husband just passed three weeks ago, July 6, after a long heroic fight with FTD/Alzheimers. I was his 24/7 caregiver for many years. We knew he was having issues starting back in 2010. But he wasn't actually officially diagnosed til 2017. His mom and brother both died of Alzheimer's. He was ambulatory and verbal and continent right up til pretty much the end. He never felt like he was anything other than "just fine". We took long walks every day and just eeked out every precious moment that we could. It was a long grieving process all those years but even with all that time, my grief now that he's gone is overwhelming. It's like time has stood still for me but has passed for everyone else. And after having him as the focus of my life for 44 years, keeping him safe and helping him in whatever he needed, now there's this huge void. I know in time I'll begin to move forward to my next chapter... Just wanted to say I'm so sorry. 💔
First of all, I’m very sorry for the loss of your husband. It sounds like you and he had a life path very similar to myself and Heather with all of those years behind you. It’s very interesting to hear how things panned out for the two of you, and it does sound like the best possible scenario, especially when compared to how much some other people struggle taking care of a loved one. I’m hoping that this path I’m walking with Heather will unfold in a similar way. Thank you so much for writing your comment, I really appreciate it hearing from you and I wish you the very best.
I’m so sorry you lost your husband. Being caregiver must have been a labor of love. You’re in my prayers ❤
❤@@jacksmythe7921
@@JohnvanGurp❤
You my dear are most amazing. I just stumbled upon your comment here and I know that it's been a while now but I truly hope you are doing well and moving forward with your life. I just really wanted to wish you the most joy and happiness for the rest of your life.
Your love for Heather is beautiful. My mum had dementia for about 7 years, she died in 2020 age 79. My dad took care of her, like you he was loving and patient, even when she gave him a black eye (she went through a stage of being aggressive -which thankfully stopped). It is such a cruel disease, when you should be enjoying life together instead you are alone, and looking after your person 24/7. You can’t discuss it or share the responsibility with your person because they’re not able to understand. It’s like they died, but they haven’t died. The only thing that softens this situation is love. Loving someone through dementia is hard, because they’ve changed beyond recognition and you don’t get loved back in the way you used to, but lm certain somewhere inside Heather is her love for you and lm certain it’s as real as it ever was. Even when mum’s vocabulary deteriorated to just a few words, she still occasionally managed to say ‘l love you’ to my dad. Thanks for making these vlogs John, they are honest and helpful. Take care of yourself too.
You really summed it up beautifully. Thanks for understanding.
In sickness and in health. God bless your soul, you have a wonderful heart.
My husband was diagnosed with dementia two years ago. When he asked me the same question for the 10th time , I just answer like it was the first time. I question myself everyday. I try not to get too tired and aggravated. It’s just so hard to see him this way. I am his safe haven, which means I have very little alone time. He doesn’t like me to be out of his sight. It’s difficult because he knows he has memory problems.
I have learned to not worry about the things I can’t control, but focus on what I can do for him.
I’m so glad I found your videos. This will help me be more understanding.
I mother used to tell me "I'm going crazy", of course I told her no. She also got angry when I came home from work (I had a caregiver) because, after my father died, she never wanted me out of her sight. She'd yell at me and then give me a big hug.
What a wonderful husband you are, treat yourself well, rest when you can, one of Gods angels on Earth…
I'm so sorry this horrible disease has afflicted your family. I'm new here. I hope you have support for yourself John.
Hello John. I just found you. My husband has Parkinson's Disease with dementia. I feel comforted by your words and your attitude. I am now subscribed. I will talk to you again.
My heart goes out to you. We just lost my Mom in April from this disease.
@@debbiebrooks8216 thank you. It’s hard to see them go down hill so fast.
Demitasse. That means the cup is half full.
You're doing wonderfully, John.
I've only just discovered your vlog. We're at the top of the iceberg at this.....and I'm learning so much from you. It was the day after the presidential debate this year, and this topic became the hot topic, right? That's when I got a panic stricken call from my daughter that she'd just received a text from her father needing a ride. He had lost his car. This was roughly two hours before he forgot how to use his cell phone apparently. My daughter coming back from the ocean with her family. Three hours away. Until this episode we were not sure....there had been signs but you pass those off and hope for the best. That's how new this is for us. I'm appreciating all the insights you have. Our situation is complicated by the fact that. I'm 70 and we've been divorced since I was 40. Although we have kept contact. This is huge for my daughter, and his family is adament that he not go in a home. However, they are not willing to assist nor see him at all. At this point my daughter and I are splitting daily visits....a thing I do for her, not him. Not being cruel here. I'm not even sure I'm welcome, but he needs watched and my daughter has two tiny children and a house not large enough to move him in. You are like a beacon of hope and resources. Already I sent her your photo of the clothes dresser thing you made. Kudos .....
You're very encouraging. Thank you.....
Sounds like you have a tough situation on your hands… I hope you figure things out going forward. Thanks for your comments, I really appreciate it.
@@JohnvanGurp ☺️ laughing here. It doesn't help me personally to know that I finally was able to retire June 23 of this year. At 70. I kinda expected to be celebrating or something. Not does it help that his sisters all call my daughter complaining that my daughter needs to up her game. Now she and I are standing this.... she is doing all that she can. And while these women only live an hour away, they have yet to commit to any physical time or visit. Just their criticism. I'm probably no longer family to them, so I'm not getting the complaints. But I have the most sensitive and caring daughter. She's struggling to be in this together for her father. But the guilt they are giving her is hard to watch. It's why I'm doing everything I do. For my daughter. If you wanted to give a perspective on your vlog. To answer the question....how does the caregiver deal with perhaps well intentioned family members like this. I believe they only hear her father's pleas of no care giver....no nursing home....without understanding the enormity of the problem. You have your sisters help. I've seen it. That's so awesome. He has sisters close enough to help....but aren't doing so. The question is...how do you either encourage them to decide a plan wherein they visit once a week....or? At the very least slow down the criticism of the care giving daughter. Would it be appropriate for me...as her mother....and as a person who is visiting their brother three to four days a week and so proving my concern for him....would it be appropriate to approach them with ideas they might be able to help with. Polite and kind. I'm not mean spirited. But you are such a fabulous care giver and do seem to have bridged the idea that it takes a village and respite for yourself is part of upping your game.
I'm using that phrase because two of the sisters used those exact words on my daughter and after all she's done so far, she was shattered. What do you think? Maybe other caregivers hear things like this? Maybe not and I'm asking too much. As I say....we are new to this.
@@kathyvickman9203 I hear you. You know what I can do that my help is make a video describing the system I used to call up for help, and how I interface with people who want to offer help. I can just share what I’ve gone through and maybe it will help you in some small way.stay tuned, I might be able to do that tomorrow.
@@kathyvickman9203 would social services get involved, to do a care needs assessment of him, as a vulnerable adult ? who is next of kin.
anyone can report a concern for welfare. all the best.
You are doing a great job❤ my parents had me in there 40's so i took care of my dad for a year, he had alzheimer's when i had 3 year old twin daughter's to take care of. It was so hard but so glad i did it. Then later now my daughter's were just getting out of 8th grade and my mom moved in with us. She lived with us the last 6 years of her life passed away at the age of 94. The last year she was full care in a wheel chair. It was the hardest thing i ever did in my life but she passed away with us in our home and i would do it all again. Sometimes i would cry when id have to get up with her all night long but god always heard my cry and he gave me strength to go on. May god bless you every day ❤😊
Its awfully hard in this life. OUR HEAVENLY FATHER IS ALWAYS WITH US. Be as strong as possible
I nursed my dad through this. I’m 67, divorced & I am starting to be afraid for myself…God bless you.
Yep!
Hello John. I stumbled across your UA-cam videos just a few days ago. My husband has recently diagnosed with Alzheimer's so we are just beginning this journey. Thank you for posting your videos. They are very helpful.
Best wishes to you going forward… It’s a struggle, but if you reach out for help from the Alzheimer’s, association and friends and family, it’s manageable. Stay strong, you’re not alone.
First time watching your channel,and I had to click on the subscribe button! Love how you want to keep things light and with some humour❤Humour and MUSIC and art you can touch,and a loving husband like you.... Love is all around us❤
Thanks for subbing!
Heart goes out to you. Heather is fortunate to have such a loving husband. Hang in there.
Just found you. thank you for your compassionate care. truly inspiring.
Heather is in your wonderful hands. I wish you peace.
My mother has had dementia for maybe 10 years.
My dear, sweet hubby died of Lewy Body Dementia w/Parkinson’s. Diagnosed January 2017. Noticed something very significant Christmas 2016. Very significant.
He died March 28, 2022. We had hospice, but I had to put him in local nursing facility last 5 days of his life. He went peacefully, our lives during his LBD years were mostly 24-hour sundowning, delusions, seeing and hearing things and violence. This was not my husband.
I miss him every single day.
Keep up your great caregiving skills and technique.
You are providing such an excellent service for caregivers everywhere. Thank you.
Having experienced this with a grandma and mother-in-law, I learned to meet them where they are. I mourned their loss long before they passed as over time they became complete strangers in their own bodies. It was a slow fading away of who we once knew. I told onto and cherish all the wonderful memories. I am praying for you both. May God’s peace surround you.
😢💔 - Bless you for continuing to care for her.
Your beautiful wife is still just as lovely as ever. Amazing how fast this illness comes on. My Mommy passed when she was 77 after about 3 years in a rehab facility. I read as much as I could about dementia & condensed it down to "Just remain calm". When she could still talk I'd ask her about her high school days. Amazing how much she could recall when she couldn't even remember who I was. One evening she was resting and suddenly said "Who ever thought I'd end up like this"? I miss her so much, I can't wait to see her again. God bless you for showing us what love is.
John - you're doing great taking care of your wife - Heather. You're a caring husband.
My cousin is only 62 and she was diagnosed with FTD in May 2021 and I can't believe it's already been 3 yrs with this terrible cruel disease. We can only take it day by day and enjoy as much as we can with our loved ones. God bless you and your family and much love and tender to Heather.
I remember you both at my 50th birthday party, November of 2020. What a difference just a short 3.5 years make. Thanks for sharing and take gentle care of both Heather and yourself.
@@sonyawinterberg9278 thank you Sonja, I have very fond memories of that evening as well and the warmth of your company and the company of your friends. Unbeknownst to us it had probably started then already. Well, that’s the way it goes. I really appreciate your support, and your comments and that you reach out. *hugs*
"...we're going to get through this together...the end is going to be sad and tough...but we're not going to have a tough time during the journey...we're going to try to make it as good as possible." Thank you. That helped me.
You are doing a wonderful job of taking care of Heather as she progresses. Your compassion, upbeat manner, and consideration get through to her, and make her journey smoother. Thank you for sharing your heartbreaking account.
@@jenniferrobinson1792 thank you so much for your kind and supportive comments, it really lifts my spirits to hear from people like you.
My husband was diagnosed with bvFTD 6 months ago but has been symptomatic for 2-3 years. He is deteriorating rapidly and although he is able to communicate, he spends his day walking, pacing and eating. He no longer expresses love or empathy to myself or my 3 children. I am already a widow. Thankyou for sharing your story, you are coping far better than I am.
So sorry to hear it - very similar to Heather.
My dad had FTD. I'm so sorry that you are going through this. It's really hard. Praying for you ❤
I'm sorry for what you're going through. I wish this cruel disease didn't exist. 😢
If you ever need to vent you can reply to this comment and I will lend an ear. 😢❤
My mother-in-law is 95 and lives in assisted living for other reasons. However the past two years she's had onset Dementia. She remembers the past perfectly which is a blessing. Phone conversation is hard or talking about the present is hard. Everyone is so different in how they experience Dementia. Heather is lucky to have you. Thanks for sharing your experiences.
My mother and I went through this with my father. I adored him so much. We used to sit together for hours talking. It was so hard to accept it when he couldn’t communicate any longer. He came to me in a dream a couple of weeks after he passed. He looked young, was laughing and hugging me, talking to me. I treasure that dream so much. I look forward to seeing him and my mother in heaven. My mother went through a short period of dementia about a month before she died. She had been falling and those falls caused her to be confused. I was grateful she didn’t have a long term dementia like my father did when he died. She passed peacefully. I loved both of my parents more than I can begin to express. I will see both of them again in heaven. My father died of Alzheimer’s. There was a big difference in their illness. Mom’s was very short. Dad was sick for several years before he passed.
It is so important for the family to be there to help when going through this disease with a loved one. My mother and I leaned on each other and my children were a lot of help. My son and daughter were there for support when mom died. Stay close to your family as they go through this. It is so hard and their support is essential.
@@katherinechatham9032 thank you for sharing your story… I wish you the very best going forward.
Your mother was lucky. So was my grandfather I'm so glad he didn't have to suffer like so many do before his hand was finally taken. It's hard to lose a parent, peace to you.
@@katherinechatham9032 that helped me believe it or not. In fact I have tears in my eyes as I write. That you relied on your mom and that helped you. See? I have little attachment to my ex. For me, the whole thing is about trying to get my adult children through life. And this thing with their father is life. I feel good that I can watch TV with him and see that he's coping. But my worry is my daughter who is struggling with a three year old and seven. Giving her father all she can...and? She calls saying her brain is spiraling. I get it. I'm old enough to have lost my parents. My heart breaks for her and there is nothing I can do to stop it so I do what I can. That you have find memories of your mother doing what she could to help you....or you help her. It makes me feel I'm doing the right thing.... sometimes in life. That's the best we can do. That's me for now. Hoping I am leaving her with the knowledge I love her.... that's the best that I can do
@@JohnvanGurp thank you. I’m a Christian and I’m looking forward to the Lord’s return. I do miss my parents but know I will see them again.
@@cindifischer6919 thank you. Peace to you as well.
Thanks for sharing this John. It is very hard for people to imagine what the progression of the disease looks like. I love that you both maintain a sense of humour.
God bless you for being the person you are. God bless Heather as well.
love and compassion - I have so much respect for you, sir!
Thanks for doing these informational videos, it’s probably difficult at times but I do find them so powerfully helpful. I’m 74 wife is 76, her short term memory has had significant problems just starting 3-4 months ago when she had COVID for a month. It is getting worse rather rapidly, I’m in shock. But we can’t even get an appointment to get diagnosis for nearly A YEAR ! You are helping me understand the situation and what’s ahead… and your grand attitude! Wow! I can only hope to emulate your positivity and kindness over the rocky stretch ahead.
I had a severe problem with short term memory after having Covid. I was so sad because, as a nurse, I knew that this could be the end of my independence. So, the day before I called a neurologist, I did a Hail Mary: I FASTED FOR FOUR days then ate only meat for one meal a day the rest of the week. I was in keto acidosis. After one week, my memory was back. Completely back.
@deeprollingriver52 phew!!! I can only imagine the relief you experienced in recovering your faculties… Great to hear.
It's so beautiful that you're doing this. I work in dementia care and not many people have the patience and understanding to give care at home. She married a saint. God bless you.
You too are a hero. God double blessed you with patience and kindnesses beyond. ❤
I was watching your past videos and the very first picture of Heather in 2006. This disease is called the long goodbye. She is a beautiful woman inside and out. I attended meetings upon meetings in person and online to help me cope. John, you are an inspiration to those people going through it. There is another couple on YT, they are in their early 50's and the husband has a form of dementia. This disease affects the whole family.
@@deedeew4040 it’s so very many people seem to be touched by it, in all walks of life. It truly is devastating to families and victims. Thanks so much for your comment, I appreciate it.
I just found your channel, I appreciate your videos. I am also caring for my spouse with dementia since 2021. That is when things got harder. I’m leaning on the Lord for my strength to get through this season. You seem to have a good outlook on it. 😊🙏
💚 You seem like a wise and loving soul. New sub. I suspect I'll learn much from your channel, and encouragement too. Perspective is everything. When i was a brand new 18 year old nurse assistant during college, i worked in an assisted living facility and there was a bedridden women we cared for, with no verbal communication and appeared to show no understanding of her surroundings for the most part. Her husband came every day and spent the day with her. I asked him one day if he felt she knew he was there and knew who he was, he replied "It doesn't matter. I know who SHE is." I learned a great lesson from him. Part of me regretted being so forward but it helped me be a better nurse. He opened up after that, teaching me about her life, bringing pictures. Perspective is EVERYTHING.
That’s a beautiful way to put it! It’s exactly how I feel. My heart is still full of love for her. Thanks for your comment, I appreciate it.
Yes she is still in there i can tell. Difficulty expressing, but joking with you. I admire you and heart goes out to you both.
This must have been a very difficult video for you to make. I'm so sorry for you and Heather. Dementia is an awful disease. My Dad passed away from it in April after being diagnosed about 5 years ago
We went through this with my mother-in-law. She has Alzheimer’s and dementia. It took her in about 9 months. So hard. And it changes them so much. I’m so sorry that you and Heather are going through this too. What a terrible and robbing disease! No fair!❤❤❤. Hang in there guys!🙏🏻❤️🙏🏻❤️🙏🏻❤️
I’ve been married 42 1/2 years. You are very special!!! 🙏🙏
John, I feel for you so much, having lost my wife 7 years ago to dementia and lived your life for five years. It’s hard to watch your videos, but I do because I try to send you support for whatever it’s worth. Your journey now was my journey then and I think of you often, hoping that you find peace and that you are not alone. Take care of yourself, and thank you for sharing this. 😢
Thanks so much for that, and please accept my warmest sympathy and understanding for your loss.
I'm a caregiver in Colorado. My best friend has frontal dimentia. I feel that the disease has stolen her away. I grieve everyday. I know that in the end she'll be free. No more fear or frustration. She'll be safe then.
Take care John. I know how hard this is for both of you❤
patti
I can’t imagine how you can handle all this. I know it has to be so so difficult. You’re a wonderful husband. You’re a good man and it just shows all the love you have for her and I’m glad she has you stay strong. Keep your chin up. you’re in my prayers and your wifeand I hope today is going to be an exceptionally good day
Thank you so much, it all feels so natural and right.
Brother. Your bravery and courage is amazing. All my love and respect from Australia.
My aunt had Alzheimer’s we found her listening to her favorite music helped her. I know you’ve probably tried it. Just putting it out there for others whom might have to deal with this disease.
As well as having lots of "chemo brain" symptoms develop, my mom-in-law became completely unresponsive for a week or two towards the end of her life. But I sat beside her and hummed an old Welsh tune (her early childhood was in Wales) and to my surprise, she "hummed" along in a gravelly dry voice. Naturally we used that song at her funeral. The power of music is amazing!
@jacalynmiller beautiful… Thank you
John...i just found your vlog. I just cant imagine the torment of loss in your situation. My hubby died 5 days after his head injury and that was a whirlwind of grief that took me a year to comprehend. Its been 12 years now so i survived. The loneliness at 77 is not good. You are doing great...taking it hour by hour...day by day. Your lovely wife is still alive...you can talk to her...touch her. Hold it in. God bless you both. None of us realize this could have happened to us yet here we are. Easy does it. Take care. Peace!
I just found you, John. I’m so sorry for you both. My dad had Lewy Body dementia for about 6 years before he passed. Now my sweet husband is having difficulty. We have an appointment with a neurologist next week. I’m sending you prayers from Texas. 🙏🩷💙
I just found you. Blessings to you and your wife on this journey.
As you say its pretty dramatic. I have been a clinical researcher all my working life and worked on an Alzheimer's Disease drug in clinical trials. However the speed of Heather's decline over that 3-4 years is hard to see in this video and must be very tough for you to watch as her partner too. Its hard to imagine being lost inside your own head but your videos do show that well. You are doing a good job and sharing helps people understand all the types of dementia.
This has to be so hard sharing this. You have such a good spirit (soul). You emit kindness, compassion, empathy, love, understanding, strength and so much more. Your eyes kind and giving. Stay strong and take care of yourself too.
John, new subscriber here. I'm so sorry you have to go through this. It was very informative to see clips of Heather from 3 years ago to now. My sister was diagnosed 6 years ago with "cognitive impairment". At that time, I didn't realize that was a precursor. She lived an hour away from me but I called and visited her as often as I could. We'd go out to lunch and she'd ask, "What are you having for lunch?" I told her what I was ordering and within about 3 minutes, she'd ask, "What are you having for lunch?" It finally hit home to me that this situation was not going to improve, and that it was declining. I continued to call and visit as often as possible until she passed 5 years ago. I miss her so very much. It doesn't hurt as much now, but it still makes me sad. ♥
I’m sorry for your loss… thanks for sharing.
Oh my gosh this is so sad, I'm sorry. 😢
I just found your vlog. Please know that I will be praying for you and Heather.🙏🙏❤
I applaud you for doing this without help. My mother was in her mid eighties when she had to be placed in a dementia unit. My father was caring for her but she was now in year five of being diagnosed and elopement was a problem. She lived three more years once she went to an amazing facility. My father is now 92 and thriving…he cooks…drives…does laundry…has fully adjusted to living alone. I live three miles from him….talk several times a day.My mother died last year at age 89.
Just remember, you're not alone. We are here for you! ❤❤
Wow. Such grief. Remarkable love and devotion. Remarkable attitude. Remarkable that you have documented your difficult journey together and use it to encourage others not to give up. Bless you and Heather.
Yes, this vlog was saddening to watch but a good thing for you to do.
Thank you, that’s exactly how I view it too. I appreciate your comment.
❤❤ Your videos are masterful! My mom is 82 with dementia. It is very sad to see a brilliant woman mentally dissolve day by day. The only solace is she had a great long life. Early onset dementia is devastating for the loved ones especially.😢😢😢
You are handling this horrific battle with so much grace.
I’m sorry for you as a caregiver of someone with dementia. I heard owe time dementia being named the long goodbye! This is the first video of yours I’ve seen and your an amazing husband and I hope you make time for yourself. 🙏🏻💕
I never realised it could be that quick, I find that frightening.
I hope you have some support. You sound like you are in the right frame of mind to address you and your wife's issues. This can't be easy.
I went through this with my mother. You are being a great partner to her and must get out and get breaks whenever you can. It’s a long grieving process for what was and can never be again. I’m a widow and know loss as well. Bless you.
I'm "happy/sad" to see this, there's lots of dementia in my family, thank you for sharing. 😢😮
So lucky to have each other. So valuable to document this journey for others.
Thanks.
You’re such a good loving caring husband and carer, thank you for sharing your story. You have a special love together.
Heart breaking. My 89 y.o. mom was diagnosed with Vascular dementia 2 years ago. But I saw signs LONG before. Just placed her in Assisted Living after caring for her for 11 years, the last 6 and mostly last 2 being the worst. It's crushing. ❤ But it's horrible because your wife is so young. Bless you and your wife.
You are an uplifting soul. It's not easy to be watch your loved one go though this disease. You are a doing a fabulous job and remain positive!😊
Wow! Thanks so much for sharing such a private part of you and your lovely wife’s tribulations. I have a friend going through this but she is so reluctant to share and I don’t want to pry. Your video gives me a teeny taste and sense that I would have otherwise just had to guess at. I’m praying for you, your wife along with my dear friend now. Bless you 🙏
You have such a great attitude and are so patient. Heather is so lucky to have your support and help. Bless you.
Thank you for sharing. Retired nurse here. I worked nursing home for over 20 years and I just loved it! God Bless you ♥️. You have a wonderful attitude and it looks like you have it all figured out. I am going to follow your journey now. 💕
Dear sweet John & Heather, I'm glad I happened across your video. I'm Grace and I've been working with dementia and music for some time. I've seen such lucidity after sessions with clients, if only for a short time. Ive also seen fun, laughter and emotion! ❤ Have you a good dementia centre near you? Could they provide a one to one music/art person to help with sessions at home? Does Heather like music?? It's like a miracle sometimes. I used to find the "key" to my clients.. there's always something that still "gets them"! I'm sending love and a big hug from Wales. ❤
Great to hear from you. Yes, Heather goes out three times a week to the day program and one of the workers there is a folk musician who plays fun, Beatles and other recognizable and familiar tunes. I also play some guitar and sing old songs here at home and it brings us both joy. Big hugs right back to you, and thank you so much for commenting.
@JohnvanGurp oh fantastic! I had a feeling you would have something wonderful organised!! Sending warm regards and I shall have a look through some more of your vids. I'm thinking of returning back to working in this field soon.
All the best. X
Hi John and Heather, watching your video brings back memories, my partner was diagnosed aged 55yrs with FTD, he passed it will be two years September, he also did the walking with purpose only known to them, constant walk around the house, let me tell you, you must keep your sense of humour its so important. Take care both.
I am very sorry for the loss of your partner. That’s just way too young. Thanks for checking in, I appreciate it.
My 61 year old sister has FTD as well. She walks her Assisted Living facility all morning. But she is cherished and loved.
@@JohnvanGurpwhat age was she diagnosed at?
Any known cause for her early onset.
Please take good care🙏🏼🙏🏼
John, I am so sorry for the painful changes that Heather, your dear wife, has been suffering. I am living with a similar progression of my husband's abilities after his diagnosis in around 2021. But Heather is young, which must have been harder and more painful. You have an amazing channel. I have been watching many youtube videos about dementia and have visited many sites but never came across one like yours. I just saw about three of your videos today and I was looking forward to meeting Heather. This video was very special and poignant. Indeed, Heather is blessed! And we are all blessed at the same time as you share such practical ideas and helpful resources! May God richly bless you and Heather!
You are a true hero!. You will have a crown waiting you. One day at a time. 💪👍🙏
So many people give up on people at the drop of a hat and then I get this video as a "for you" video and I have to tell you, you are amazing. Not only have you never given up, you try to keep everything light and as positive as possible, for her. I hope it helps you to get though the day as well. Maybe that is a key to those of us dealing with a close family member who is in the throws of dementia. I look forward to your future videos.
Thank you so much for that positive feedback. A while ago I heard another husband talking about his wife’s advancing dementia and that it had started into incontinence. He said “I didn’t sign up for this”, and all I could think of was, I did. I did legally sign up to be there for her for better or worse and sickness and health, and I take that stuff seriously. I hope my channel helps you and I wish you the very best going forward
You’re quite amazing‼️ What an example you are of how to care for a loved one in cognitive decline…from how you treat Heather to your demeanor and grace. Such a strong and beautiful example to emulate for viewers who are going through the same struggle. Your vlog will be a source of inspiration to many‼️
@@PeggiMendricks I’m humbled by your praise - thank you! I feel like I’m on the right track here with my hunny. I appreciate your comments!
This is the first video of yours that I've seen, and it's very moving and enlightening (and kind of uplifting) at the same time. You're giving her a safe, soft space to move through and that's no small gift. It doesn't have to perfect or selfless (because your life matters and it's a grueling struggle to show integrity in a battle that can't be won). I appreciate you and this content so much today, from one caregiver to another. Thank you.
@@leewilcox5261 what a kind comment you have made here… It really helps me to read this type of stuff. Thanks for taking the time, I really appreciate it.
So sorry to see you both in this awful situation. My mother in law had dementia. We kept things light and silly but it is exhausting. Be kind to yourself xx
Just subscribed sir….. you seem to be a wonderful caregiver and I’m sad that this illness has come into your lives, love from you to your lovely wife is I’m sure unconditional, tested at times yet still strong
What an amazing example of living your marriage vows. A true blessing and legacy for your family and others. You both are a light in this crazy world. All the best to you and yours
Thanks, I take my commitment seriously… it’s been an amazing 46 years. I still love her so much.
11 years caring for father in law. 6 years with step mother. Sense of humor is most important. Both situations so different. I can see my own progression. No one else suspects but I journal about it. I’m a capable, volunteering, community minded, above average IQ person so can fake it easily but I see my mental deterioration. I try to remain active and maintain forward progress with humor and understanding of my own flaws.
That’s it in a nutshell… hang in there. Keep your chin up! :-)
@chrissieclapp8007 Thanks for sharing your situation. Like you, I am a "capable, volunteering, community minded, above average IQ person so can fake it easily" but I am beginning to have some anxieties about my mental capacity. I have been counting on having a large volume of 'cognitive reserve' but at 67 and with dementia in the family.... I do worry as I am on my own. Are you aware of any support structures for people like us?
U have an attitude for successful caregiving. Stay healthy.
Thank you so much, I’m doing my best.
Not anywhere near an expert in the field but it’s clear to me that you are doing a wonderful job. Praying for you to stay strong.
ty for allowing a glimpse of Heather before decline, lovely gal.
Thank you John, this was very helpful and I hope it was for you. It's absolutely still hard and you will get through it together. She will be blessed to have you caring for her until the end, as you would regardless of the reason.Please reach out to your local resources too. Much love and care to you both!!
Thank you for your kind comments
Love the way you are dealing with this terrible disease. My mother was diagnosed at age 60 and I was 21 in 1979. My dad, sister, my aunt and I went on a 14 year journey. It was not easy but our love for my mother drove us. My mother has been dead for close to 30 years now; and I proud of the journey we took together.
Yes that grief is an ambiguous kind. Your spouse is still there but they are gone. It is a roller coaster. My husband’s started with an infectious brain injury which was nearly fatal. He was on life support and in facilities for four months. That was in 2010 and he was 52. Since then he has rallied then the slow decline into mixed dementia started to appear. He was a brilliant architect with a master’s degree from Rice. I have been his caregiver the entire time. Like you I was blindsided at first, but have found peace and acceptance and try very hard to take one day at a time. I enjoy sitting in nature,gardening and playing with our dogs. I have found an independence over these years which has made me so very strong, and have discovered many things about myself that I never knew, and that in itself has been vastly liberating.Love to you both. ❤
Thanks for that heartfelt comment… peace and acceptance is the best approach.
So sad to see her before and now. You have a wonderful attitude about your wife. She is lucky to have you. I watched my mom go downhill. She was this new paranoid, angry, mean spirited person who blamed all for her short comings. Wouldn’t look after herself. Wandered. Forgot how to answer a phone, use a channel changer, or who people were. I was also and still am caregiver to my adult autistic son and now my husband who needs reminders to eat, take his insulin/ meds and sleeps most days away. People say to me how do you do it? It’s my life. Doing the best I can like you. Try to smell the roses and enjoy my normalcy with my friends. Thank you for sharing.
John, I just happened upon this video. Wow, this is a very aggressive form of Alzheimer’s. If that’s what it is. Stay strong in the Lord and He will see you through. You and Heather will be in my prayers. It’s quite a heavy cross you are bearing, but not alone if you ask Jesus to help you. It will be hard but also a privilege to be with her along this journey to go to the Lord. Thank you for sharing. I pray strength and love and humor for you. God Bless.
@@kaykrause4469 it’s just ridiculously aggressive… I can barely catch my breath. Thanks for your comments.
John, I appreciate your vlog so much. You are handling this hard situation so gracefully! My sister has dementia. I don’t have access to her medical records, so I can’t tell you what type. I just returned from traveling to visit her so her husband could have a break. We had to cut the time short due to her extremely hostile and angry reaction to my presence. I don’t know why she reacts this way, but it is very sad. My heart hurts. Watching your channel has eased my feeling of loss some, and I appreciate what you are doing. Thank you!