John’s Dementia Vlog - Introduction and explanation of my YouTube channel
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- Опубліковано 16 жов 2024
- Just backtracking a little bit to explain why I have this UA-cam channel. I hope the videos I post will be helpful to others who share this dementia caregiver journey. I promise to keep uploading content on a regular basis with a special effort to make the stuff interesting and useful. Please subscribe and follow along.
![Lp. Сердце Вселенной #30 ДВА В ОДНОМ [Один человек]• Майнкрафт](http://i.ytimg.com/vi/nrXy15orKhY/mqdefault.jpg)
Thank you for sharing your experiences with us! Your channel just popped up in my feed. I am 24/7 Caregiver for my 96yrs old Dad who has severe Lewy Body Dementia. The struggle is very real. There just isn't enough information out there about these horrible dementia umbrella of diseases and what to expect, so I'm constantly searching for more info. I believe the best information comes directly from people like you - the actual caregivers. We're the ones living through this 24/7 with all the ups and downs. I lost my Hubs - 18months ago from a sudden illness - and came immediately following his death to care for my Dad 24/7. It's been a journey, I'll tell ya. Thanks again for doing this. It's Very Much Appreciated!
... My 93 year old father has dementia with a few similarities to Heather, but watching has really helped me understand the journey of the early onset type. ..I had worked in a memory care unit for years, but always met folks towards the end of the journey....
Thank you for sharing John
You are a great help
Nice to hear from people in same situation 24/7 wow it’s so unbelievable hard
Love the way you take care Heather
I’m trying to do the same with my husband
3 years now and it’s getting harder every day
Take care❤
In all of these situations we need to do what we can to try and keep our own emotional stability. If sharing your journey on YT helps you, than that is what you need to continue to do. You are doing what many, including myself, could not do.
I have early-onset FTD. What helps is being kind, but not condescending, and speaking calmly and clearly. Give your loved one time to respond; don’t rush them or assume you know what they will say. It’s hardest on caregivers, because you understand what has been lost. I feel as if my self has suffered erosion.
@@jenniferrobinson1792 thank you so much for your insight! I really appreciate it… And this has been my approach since day one. Best wishes to you.
Sharing is important as it gets the message out that you're not alone; others have done this and they can see you doing it. Being alone handling something like this is VERY difficult.
I think it’s wonderful that you share and for us in the autumn years to be educated via someone living the life.Not sure how your videos showed up on my feed but glad they did.Praying for you guys.♥️
Hi John, thank you for your bravery and compassion. I myself was recently diagnosed with frontal temporal dementia. I Have been doing my best to learn as much about this type of disease as possible, and I believe this is the reason I came across your channel. You have inspired me to start my own vlog, I am doing my best to learn how to talk about this disease with others without getting the “oh you poor thing” look. Thank you again and stay strong! All the best Tom
@@PorkChopPiper-ln4uw big hugs to you, my friend… As you can tell, I think that openness and sharing is really the absolute best way to get through this because so very many people are touched by the condition. I’m sorry that you’ve been diagnosed and I hope you have some supportive and loving people around you. good luck with the Vlog, I really look forward to subscribing to it. Best wishes.
@@PorkChopPiper-ln4uw I’ve had people shocked that I’m sharing to this degree, and suggesting that dementia is something to be ashamed of. So I think between us all we can help get rid of that ridiculous stigma.
Wishing you the very best! ❤
You asked what brought me here. I’m not sure but possibly Dr John Campbell’s videos from England. I discovered him during COVID and, among many topics, he has some very interesting information on dementia. Worth checking out. Blessings to you and Heather.
My husband has undergone several medical emergencies and hospital stays during a year long fight to save his foot...a fight that we very recently lost. So now I am the full caregiver of a new amputee with a lot of other issues thrown in. I had started to look at caregiver channels for tips, tricks, and the feeling that I am, well....yana.
It’s fantastic that you share the content to help give you strength and connect to the outside world, and also to help people going through the same experiences with their loved ones. I stumbled upon your vlog purely by chance when looking for some medical information regarding dementia on UA-cam, your vlog followed on after the video I watched had finished. So pleased I found you and now follow your journey with Heather.
No idea why your videos started popping up in my feed, but my big sister/BFF/boss/road trip buddy was diagnosed with Glioblastoma (Brain cancer/tumor) on July 29, 2019 and passed away 9 weeks later. She exhibited several of the same symptoms that your sweet Heather shows. You are both in a lot of people’s thoughts and hearts here, glad you are sharing this difficult journey with others.
Thank you for your comment and I’m so sorry about your sister.
I am not certain why you popped up on utube for me but am very glad you did. I think sharing your journey is such a valuable thing to do. Thanks so much. Dementia is something that impacts so many of us, directly or indirectly. My mum had dementia although her experience was very different from your wife’s. The support you give her is truly inspiring. Best to you, from Wolfville.
Thanks so much for your positive comments, fellow bluenoser :-)
You popped up on my u tube. I think you are a wonderful husband. Please carry on sharing. You need support as much as your dear wife. It is good to talk. People appreciate your honesty. You are doing a great job. Bless you. x
@@barbdurban900 thank you so much for your kind comments, it really lifts my spirits.
I have been talking a lot about dementia and Alzheimer’s due to a family member being diagnosed and I think that’s why your channel just started popping up on my phone.
To those few who ask how you can share - to that I say: how can you NOT share?!!! I can’t imagine going through any kind of emotional upheaval and keeping it bottled up. And by sharing you are absolutely bringing awareness to this cruel disease. Just know that you are overwhelmingly supported and appreciated ❤️🩹
@@kathrynharnecker4394 thank you!🙏
John...YT introduced your channel to me a couple of days ago with the video of Heather's change to eating with her fingers. A much loved member of my family is dealing with PPA--it's been a little over two years since diagnosis, maybe five since we first started noticing changes--and though each person's journey through this horrible disease is different, it helps to know about the varied ways it can manifest and how others are coping with its progression. This disease is hard on everyone it touches, but it is important to know you are not alone. Your love for your wife and your patience and compassion are inspiring and comforting. Thank you so much for sharing.
@@anneholmberg4 Thank you for the comment… it sure does seem to manifest differently for everyone. The PPA complication really throws a wrench in things, and it makes so much of the existing resource material less relatable, so I’m very glad you found my channel as it makes it gratifying to share our journey. Best wishes for you and your family member.
I was told about your channel by watching Trey &Theresa's channel. Trey sent me here. ❤
Me too
That’s an awesome connection. I’ve been in touch with Trey…
I have watched half a dozen people share their spouse's journey with this dreadful disease. You are education millions of people throughout the world. I was a care-giver to my late husband with Alzheimer's. I have to be honest with you, I would not be able to be a care-giver again, it took everything out of me. You are a kind, caring husband to Heather. Thank you for sharing.
@@deedeew4040 I can understand that! And thanks for the supportive comment, I truly appreciate it.
I am a spouse of an early onset dementia love one. I get so frustrated, the goal post is always shifting. I can do everything perfect and a new symptom develops that causes a change in routine, meds, cognitive level. I know how it ends - and hope God gives me the strength to see him through.
YT brought it into my feed. My mom was diagnosed last November and I will be her primary caregiver. Because of that I try to learn everything that I can.
@@katherinemitchell9003 you are not alone!
Hi John, I think I was sent in your direction because I have an incurable disease. I’m honestly so happy to see how you are handling things with Heather. I’m sure some days are so very hard! But your positivity is infectious ❤❤❤
Wishing you peace and comfort 👊 *heart*
While I was looking into various aspects of dementia via UA-cam and Facebook groups, your channel appeared. Was pleased to see you are in Nova Scotia, as well, considering I live in Bridgetown and my son lives in Fall River! 🥰
It’s a small world
My sister-in-law (65 yrs. old) has a very similar type of dementia. The speed of decline has been shocking. My wife and I have been traveling from South Carolina to NYC (where she lives) often in an effort to help her in various ways. Her son, the daily caregiver, shows his frustrations often, and is ready to "throw in the towel." He has lived in her apartment his entire adult life (he is 40 yrs. old). You are a unique person. I want my wife to send the link to your UA-cam videos to her nephew so that he can see how you cope and endure in a calm and loving way. I am hoping she does. Thanks!
Thank you so much, I appreciate it.
Good on you for sharing this!! Prayers for you all!!
@@jimmywarren6685 thank you, the sharing is great therapy for me. It’s a release.
I'm here because I actively search out for dementia videos from actual people going through this progressive disease. I wanted something more personal than a lecture from a medical professional..
@@BeeHus2256 that’s very interesting. I promise you’ll get nothing but raw unfiltered content here for me. I wear my heart on my sleeve. Glad to see you here…
Because I had been watching l'm Betty I expect. I hope we can all support you while you support your dear wife ❤
Hi John no advice I am not caring for anyone and I live in Australia but I just wanted to say how wonderful you are to look after your wife and I love all the gadgets you have for her keep up the good work
YT shared a video where your wife started eating with her fingers. I appreciate you being open.
Your page brought me here as My mother was diagnosed with early onset alzheimers at 55 but sadly she has since passed away and it was a long difficult road for my dad who cared for her at home for 16 years before she passed. To watch your love one lose a part of themselves everyday is heartbreaking . I believe if my mum was put into care she would have spiralled downhill fast but having the care and love from family and friends at home she held on for as long as she could.
To see how you are with heather she is truly blessed to have you . ❤
Thank you for your kind comment, I really appreciate it
My father had dementia, his aunt and a first cousin had it. My elder sister was just told by her doctors last year that she has dementia. I believe it is in our family genetics, it is hard to think of being tested for something that you know will end so tragically. Sad to think of the mind is wiped clear of so many memories of a lifetime.
@@TheLamba444 wishing you the very best going forward.
@@JohnvanGurp , Praying for you and Heather.🙏Thank you, my father passed in 2009, my sister's husband is taking care of her in Michigan, she no longer calls me as she used to, it is hard not being able to be there to help with her care. My mother had me and my younger sister to help care for our father, until he could no longer walk and bedridden. We eventually had to have him placed in a nursing facility and our family members would go and visit with him every other day. My father's dementia was slower in nature than your wife's, we suspected something in the late 1990's. He started saying to friends, "I can remember your face but can't remember your name."
I came across the channel researching dementia and other individuals who have been diagnosed or the caregivers. Always looking for positive approach’s to care. My husband has been diagnosed. It’s just nice to network with others and you don’t feel so alone. Hope that makes sense. God Bless.
@@Sharon-d5o Please stay in touch, you are not alone! I found that there’s so precious little in the Alzheimer’s and dementia care world that I can truly relate to. Besides the fact that most of the sites and information seems to be focussed on people who have a longer term with the disease, they usually don’t also have aphasia, they are usually older, and the caregivers are typically not their spouse. So as a 63-year-old spouse old caregiver to a partner it’s a much less common presentation, and it has some unique challenges and feelings and emotions tied into it. I totally get what you’re saying. Hang in there and I hope you have as smooth a time with caregiving as I have. It’s tough as hell, but it seems manageable at this time.
Thank you for sharing. Really helps.
Thank you for sharing!
my uncle is in your shoes with his wife- has been for some time now
and her condition is far more advanced than my dad's
i don't know how he does it - it has to be draining him
i am afraid of growing old now because i have no wife or kids to help me if this happens
I was looking at different travelling vlogs and last one was a Nova Scotia Couple travelling across the world. Your vlog popped up. Why? I don’t know.
I started looking at what you posted and I found your info very interesting. I have 2 relatives and a few friends that had dementia and now my Mom has early dementia, for past few years, but so far she is doing fantastic.
I subscribed and have watched a few of your vlogs and I will keep going through them. It touched my heart how you’re so patient, thoughtful, helpful for your wife. We need more people in this world like you.
Your vlogs are very informative.
Thanks so much for your supportive comment.
I think because I followed the Pippens yt sent this to me. My sister had been having memory issues for a few years but never was actually diagnosed, then in 2021 it started to really show and she was having trouble dressing, could no longer go out alone because she would get lost but I think she was in denial then in Nov. she had a stroke and surgery but never regained consciousness and as sad as it was I always felt like it was the easy way out for her. I would not wish disease on my enemies. Prayers for you and wife and you are doing a wonderful thing sharing this for others that might be in the same situation.
@@nancisailormoy9135 thank you for your comments… It’s a brutal disease! I just learned about the Pippens so I’m going to watch some of their material as it seems very relatable. Take care!
I found your cannel by watching Dan Salinger. He is his fathers caregiver. His father is Ed Salinger.
Sorry to hear of the diagnosis. Live is so unpredictable and crazy. AND short.
You got that right!
Your channel came up randomly on my feed. Happy to watch! 😊
Not sure how & why I came across your channel (this week) but glad I did. Probably appeared on my feed as I belong to dementia support groups (on fb) and some dementia vlogs on UA-cam. I post pics and updates about my husband on my fb page and often wonder/ worry that In doing so I am “over sharing “ but I always do so respectfully and if you saw his pics you wouldn’t even guess he has dementia.
I have the same worries that I might be over sharing, but people reassure me that I am not. If I think about what Heather would have said, I’m sure she would not mind at all as she would find us all very interesting. So that’s always in the back of my mind. Thank you for your comment and take good care. Maybe we will encounter one another in one of the Facebook support groups, I follow many of them.
@@JohnvanGurp You are doing a great thing sharing. You do it in a very respectful way. Very thoughtful of you.
@ralphe5184 Thanks!
Hi John, I have been following you for many years, I don't remember how long and I cannot remember why. Possibly because I follow a channel based in Yarmouth, Nova Scotia (Lynn Hemeon) and your channel may have come up in UA-cam's algorithms at some time in the past. Regardless of when or why, I have kept subscribed and watched what you have offered. Your current 'thread' has rather caught me offguard. There is a good chance I am on the opposite side of the situation. Certainly I lose focus easily and need to stick to routines to get me through.
@@GrandadsOtherChannel oh my goodness… I can’t quite imagine what it be like coming to terms with this. It sounds like you are in early days of wondering. At some point, you should go get a memory test and talk to your doctor of course. I also don’t recall how we got connected here on UA-cam, but I sure do appreciate your support and the comments you have left over the years. Please stay in touch and reach out privately if you prefer. jvangurp@gmail.com
@@JohnvanGurp Thanks, John. I have made a note of your contact details, so you can delete this reply if you want to prevent unsolicited emails from others. At the moment, your videos have encouraged my wife and I to talk about life together 😊
@@GrandadsOtherChannel that’s a very good idea… You have to be practical about things. Stay in touch!
thank you
John I support you ❤
Hi, I brush up my English watching you tube and I came across your channel. I live in Switzerland….my husband had a dementia diagnosis 6 years ago, meanwhile he‘s 86. Due to the neurologist it‘s kind of a mixed form, not Alzheimer‘s. It seems that the progress is rather slow but continues to worsen. Many things that must be familiar to you. I could always go for the same walks and it‘s every time new for him. I wish you patience and confidence, Erica
Thanks for the comment, and I’m very interested that my videos showed up in your feed and Switzerland. That’s pretty cool… I’m sorry about your husband and I hope your managing OK. Take gentle care.
Yr channel just popped up John
Yr an amazing husband dementia is such an aweful disease for yr loved one x
I don’t have anyone near to me with dementia
Was wondering what Heathers early symptoms where from watching a couple of videos it seemed so quick
Thank you hope I’m not being to personally x
Hey, thanks for your kind comments. Yes there’s no question this is just absolutely brutal. You are right that it came on so quickly… Just staggering how fast this is gone. Her first symptoms were just a few little lapses in memory. Very uncharacteristic ones too because she couldn’t figure out how to solve the problem. It was always extremely organized and a top of everything and suddenly, her ability to manage tasks started to suffer. It’s just been a steady roller coaster ride downhill since then. You’ve given me a good idea. I think I’ll do a separate video on the signs and symptoms. Thanks again for your comments. I really appreciate it.
@@JohnvanGurp thank you John I did catch yr separate video x loving the idea that you both move downstairs it might be traumatic to move somewhere unfamiliar x also If you have to get help in you have upstairs x
good yr a handy man.
Is it unusual for sufferers to eat with fingers ? Thats fascinating to me x
So glad you have the support to have yr breaks x
I imagine that UA-cam put your channel into my feed because I follow Dan Salinger's channel about his father's dementia. I see nothing wrong with what you were doing, at all. Educating people and making them aware is a good thing. I'm sure that you know whether Heather would be I'm sure that you know whether or not Heather would consider this an invasion of her privacy. Also, if this is helps you, keep doing it. You are carrying a great deal of stress and responsibility, and if this helps, good.
Thanks so much for your supportive comments, that means a lot to me.
There is a channel , "Careblazers Dementia", which contains a lot of videos and good information for care givers.
Thanks so much, I think I’m subscribed to that channel.
I recognized your name and pic from a Dementia Caregivers page on FB. 👊🏼
@@StuckinMO Awesome! :-) some of those groups are so extremely helpful and supportive. I’m glad to make this connection with you!
@@JohnvanGurp - I appreciate your posts and comments. Your candidness about your caregiving experience is especially helpful.
Look into the work of Dr Georgia Ede. Incredible stuff.
@@noah4987 unfortunately we’re way past looking at diet as a way to prevent this disease from progressing. Her brain is steady significantly damaged.
@@JohnvanGurp you may be able to stop/slow the progression. I truly believe that modern medicine has been influenced by big pharma and that the doctors have been misled. Dr Chris Palmer's book Brain Energy goes over a lot of it as well in regards to mitochondrial function.
It may sound like a Hail Mary attempt, but I think at this point it could be worth a try. Best of luck to you both
Have you watched any videos of Dr. Mary Newport? Her husband had dementia and she found coconut oil and C-8 MCT oil made a hugely positive impact. Good luck brother
@@CapWalks1 I haven’t seen any of her material, but to be open about it we are way past that point. I really appreciate you commenting here!
@@JohnvanGurp Dr. Newport has a compelling story. I’m convinced she is onto something. Good luck my friend.
On your last short video after Peter left you mentioned how you have to clean her up……. Too much information. That’s private
It’s reality though… nothing to be ashamed of.