John’s Dementia Vlog - Nov 2023 - lack of focus and understanding

I was trying to get Heather to help me with an electrical project where she would watch a light and stamp her feet when it went out. The goal was so I would know which circuit breaker was the right one to turn off. You will notice that despite her good humour and willingness to cooperate, she seems to have no focus or ability to understand what’s required.

[@michellebehr7669]

Heather seemed willing to help but unable to comprehend. She had a positive attitude

[@eastcoastrabbit4474]

Boy, that's heart breaking. What a terrible disease. I feel so bad for her, you, and everyone that cares for you both.

[@michelepaccione8806]

It can be hard to wrap your head around someone’s dementia symptoms. I remember one of my sisters asking me whether so thought our mom, who suffered from Leah Body dementia, was “faking it.” She then went on to tell me that she and my dad had discussed it and agreed that mom was “faking it for attention.” By then our mom had forgotten how to cook, drive, clean, dress herself properly (she’d put things on backwards or button things incorrectly). I’d resigned from my job to be with her 7 days a week because my father was in denial. It was shocking to hear that my sister didn’t get it either. But the worst was a nurse at the hospital, after my mom broke her hip, insisting that she wasn’t in any pain because she hadn’t pressed the button on the wall next to the bed to let someone know she needed pain meds. She couldn’t follow instructions any more. But even a medical Professional couldn’t understand her limitations.

[@SweetSassyBull]

OMG that's beyond heartbreaking for you. To watch and care for someone with the disease is hard enough but for some of your immediate family to not believe that she was unwell is horrendous. The hospital incident is pure neglect.

[@mercywilliams2698]

🩷🍃🎡🦋✨such a shame you were surrounded by that level of non acknowledgement..the insensitivity. All credit to you for being loving and giving. 🪴🌺

[@susanvangurp1654]

Oh dear, she’s really not understanding anything. At least she’s laughing and from your tone of voice you’re patient.

[@JohnvanGurp]

My mind is racing behind the facade…

[@mircat28]

Sadly, it doesn’t necessarily mean she knows why she is laughing or she knows what she is laughing about or that something is actually funny.

[@NMGCountertops]

@@JohnvanGurp❤

[@barbaragalletta3030]

My heart breaks for both of u. One of my worst days, when my mom didn’t remember me.

[@JohnvanGurp]

😢

[@SIMpip374]

I will remember that day too, because that is when you realize this is really happening, it is a hard day😢

[@michellesouthflorida9682]

I can see now how they end up wandering off and getting lost :(

[@johnevans1969]

It is so hard to witness this happening to your other half. I never know who I'm going to see each morning, will she have control of her bowels, will she have passed in the night. My God the things that take place while "sleeping" kicking, thrashing, dreams, nightmares, talking like they're having a conversation, on and on and on. I have never imagined such a catastrophe. You hear things growing up about some elders but to be in the middle of this is such a gutpunch. And they are clueless about their actions and the multitude of emotions or lack of emotions. No rhyme or reason. A whole lot of praying 🙏

[@JaneCarr-e9m]

John, you are incredible! The love you hold for Heather lives on. Til death us do part & even beyond. Bless you both always.

[@lilyd1010]

She's still a lovely woman n so gentle in nature. I hate this disease. I hate what it does in such a cruel way. It's hideous. She's trying so hard... I can't even imagine...

[@sandrameredith2797]

How you are so patient, I am finding that the hardest, they have such a slow pace

[@peter.4015]

Praying for you both

[@connielahman5725]

Bless you both in this difficult journey.

[@Aussiedreamer-pz5uw]

Lovely lady🙏

[@JerryJones-k4o]

John truly hope you have help with her I know how hard it is by your self BLESS YOU

[@ChristineYang-g9l]

Hope you get help when the time comes. Its a horrible disease.

[@JohnvanGurp]

I’m keeping my options open… I have help now from a couple of sisters and my daughter, and Heather goes to a day program three times per week so I have some free time to get things done and to decompress. I’ll consider live-in care at some point if it seems like I need it, and I will also consider long term care in a facility if needed. Thanks for your comment, I appreciate it!

[@margritpiepes8242]

God bless her Heart. My Mom had Alzheimer but I was not there due to being overseas . Sometimes she did the most wildest things . I hood hd us having if getting a assistant to help him out . Because caretakers get burnout and depression .

[@justme6767]

I would write notes for my grandma like sink, light, door etc for her so she could remember the only thing I didn't let her touch was a stove or coffee pot I would cook or make coffee .

[@BTNomad]

That was totally my sister. She couldn't follow directions or watch anything with comprehension. She was 56 when it started to get really bad.

[@JohnvanGurp]

It’s crazy how many younger people get it…

[@BTNomad]

​@@JohnvanGurp, you have to wonder how many people go undiagnosed or misdiagnosed before it's clear that it's dementia. So very sad.

[@BTNomad]

​, I did learn that Jackie used yes or yep to stop a conversation.

[@JohnvanGurp]

56… brutal.

[@BTNomad]

@@JohnvanGurp , yes, very much so.

[@Outdoorsy368]

God awful disease. Watched my wife help take care of her mother with dementia. VERY heartbreaking

[@johnchincotta1qwdb15]

Poor soul

[@colombecouture7974]

I lost my mother and younger sister to this disease. They were both young, mother was 66 and my sister late 50s.

[@Straight0uttaCrofton]

yeah but on the plus side she can actually move around and stomp her feet - my aunt and my dad would be on their face if they tried moving like that. on the other hand the more they move around the more they can get into, especially when the sun is setting. / =

[@ChaiLatte13]

Wow that is so hard. 🙁

[@antoinettecastle4739]

Sad to watch Heather knowing she needs to stamp but not why😢 ((())) for you both❤❤❤

[@fufurabumbacka]

Looks like a very hard time before you.

[@professortomboy6247]

I was wondering what Heather's relationship was to music in the past and if music has any impact on her mental state now?

[@JohnvanGurp]

She used to play piano and we would listen to music together. We still listen to music once in a while, but she’s not very engaged.

[@professortomboy6247]

@@JohnvanGurp I'm really sad to hear that. You are doing an amazing thing, documenting this journey. Wishing you continued strength and health. And courage.

[@Enlightenment246]

Hello John, it would be interesting to know what the medical practitioners say and or recommend for caring for someone with this debilitating disease.

[@JohnvanGurp]

@@Enlightenment246 in our case, not much! Her doctor prescribed two medicines that have some evidence of limited success in slowing memory loss but I didn’t notice any change and there were undesirable side effects. Other than that it was sort of “go make the most of your remaining days”. There’s really nothing else they can do, sadly.

[@Straight0uttaCrofton]

i have found that there seems to be a reluctance amongst doctors to even formally diagnose it

[@JohnvanGurp]

@@Straight0uttaCrofton that’s what I felt too.

[@mircat28]

Contact the Alzheimers Association! They have all kinds of info about dementia. Also look for a dr specializing in geriatrics!

[@JohnvanGurp]

I’ve tapped into all the resources the Alzheimer’s Association has to offer, including a monthly caregiver workshop. 90% of the material they have in pamphlets and so won’t seems to not apply to our situation at all. What I really relied on in early days was their helpline, just to have someone to talk to you.

[@anneh7217]

I feel that you are forcing her to react in a way that she is not able to. She has a difficult time understanding your repetitive instructions.

[@JohnvanGurp]

@@anneh7217 it was once, and part of my panicky understanding just how rapidly she was deteriorating. Fair comment though!

[@anneh7217]

@JohnvanGurp Hi again It's a whole new understanding of how to communicate with dementia persons. I continue to learn myself. All the best.

[@louise8752]

The laughing is often involuntary at this stage. Sweet Heather.

[@JohnvanGurp]

Yes, and it’s often hard to tell if it’s a laugh or cry.

[@angiepellar6441]

❤

[@aprilapril2]

Why does she have to stamp when the light goes off? Sorry I don’t get it

[@JohnvanGurp]

I was trying to identify what circuit that light was on, in the basement where my electricity panel is. I needed to do some work on a surface so I needed to turn it off.

[@GrandadsOtherChannel]

♥

[@middlemarie2]

I think asking her to do things may be stressful for her. May I humbly suggest you may consider not doing that? She is unable to understand

[@JohnvanGurp]

I generally avoid anything that makes her uncomfortable, but this was sort of a test because I wanted to see what was going on. It’s been so extremely rapid and I’ve had a hard time coming to terms with it. I appreciate your comment!

[@louise8752]

Yes this was a test to see her comprehension. No signs of distress from her just inability to comprehend 1 step direction: when -- happens, do ---. Reasonable to do.

[@middlemarie2]

@@louise8752 I see. I think she may not appear stressed but it is stressful to be told something over and over that you can't comprehend. You obviously know her way better than I do but I have seen it cause distress in dementia patients even if they don't show it.

[@louise8752]

@@middlemarie2 I don't know her better and yes perhaps there is unrecognizable "distress" being experienced but she also may forgetting very quickly or not even hearing him correctly. It's hard to decifer entirely, there are multiple failures as the body/mind loose functioning. I'm not a dementia specialist but am a social worker who has worked directly with the population. Your comments are good to take into consideration.

[@mircat28]

@@louise8752that is a 2 step not 1 step! Recognizing something happening from previous instruction then remembering to make a specific response.

[@inTruthbyGrace]

once you know a person's limits, it's only loving to care for them *_within_* those limits instead of exploiting them for clout. When my Nonna became incapable of following abstract commands I'd never have put her in front of a camera and shame her for clout anymore than I'd put my hungry dog outside a screen door and call for him to come in an eat. Shame on you.