Can anyone pipe in on helping me gauge what level of dementia my grandfather (82) might be at? 32-year-old caregiver with no help.
Hi there,
I'm new to the forum. I have been watching out for my grandfather (82) since January when my addict mother picked up and left living with him, choosing to be electively homeless so she can continue to drink and do whatever. One son is incarcerated, the other we have a restraining order against for threatening my grandfather with a sledgehammer. I really do not have outside help yet, and I am taking him to the doctor tomorrow after he had a really rough week. I somewhat suspect a ministroke, as he is on blood thinners but didn't listen last week to my 2x daily medication prompt calls. I stayed over with him this past weekend and he was really struggling to communicate and I, unfortunately, blew my fuse at him when he refused to go to the doctor---he has now acquiesced since I had a nervous breakdown Sunday (it has been 7 months of nonstop extreme stress because of his children).
I have taken over his bills for about 4 months now, as numbers, clocks, and dates have become extremely challenging for him. He had one paranoid episode where he couldn't identify me on his security camera and was not answering his phone. That mood behavior has subsided---that cognitive shift was due to him contracting COVID. He definitely had an upswing after.
He had his first bathroom accident this weekend---granted he drinks a ton of coffee and I suspect that plus the rich food we ate probably did him in. He was extremely embarrassed. In general, he is beating himself up for his poor memory, and this previously extremely social man doesn't want to do much. His wife died after a long hospitalization (which in retrospect, may have been COVID), and we went into lockdown a week later. I suspect that these systems could be attributed to geriatric depression, which I know mimics dementia (though this could also be hopeful thinking on my part). We are going to try to treat this first before moving onto other diagnoses. He is affable and charming and the concept of decline is going to absolutely crush him---he has a very spirited will to live, he beat stage 4 Non-Hodgkin's lymphoma at 77 and survived a valve replacement early in remission.
I am destroyed by the thought of this being the journey to his end, but I know that I need to stay in reality and look at all facets of his health right now, even if it's painful. He is my only current living relative that I have an affection for, and he is essentially my dad. Both of my parents were teens when they had me and both have serious health and addiction issues. My pops children are essentially useless, it's brutal.
I am the executrix of his estate as well as his power of attorney. If anyone has any suggestions, I am only 32 and very much out of my own familiar territory, as I have lived an artist's life (with a very sensitive temperament) with little knowledge of bureaucratic structures. I am very loyal and diligent, but this is all so overwhelming that I finally cracked on Sunday, both from sadness, duty, and the thought of this very important period of my life for career-building being whisked away---though I have no regrets and do enjoy his company, there are so many internal conflicts.
I am currently setting us an every-other-day in-person visit schedule with a two-day break towards the end of the week so I don't lose my mind or my romantic relationship. Is this adequate for someone with possible mild-moderate dementia? I feel like I'm shooting in the dark. I call him twice a day every day for medication time and to see that he has eaten enough meals and gotten some fresh air. He still drives competently---I'm afraid that when that eventually goes he is really going to decline from sadness.
All advice and critiques are appreciated.
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I liked this site
https://tamcummings.com/stages-of-dementia/
because after you look at the stages you can download a checklist as well, which was more detailed. You will have to supply an email to do so, but they don't spam.
On you-tube, Teepa Snow has excellent videos, as does 'Dementia with Grace'.
This is also an excellent forum, and they discuss all the dementias:
https://www.alzconnected.org/discussion.aspx
It's helpful that you give the physician a heads up before the visit about the behaviors you've noticed. Write a note and hand it off to the staff when you check in. As you noted, his doctor will likely run some labwork to rule out other causes, make sure his blood is thinned out appropriately, and assess him for depression. Generally the next step would be a referral for cognitive testing but your grandad will likely have a head CT or an MRI first, since you felt like he may have had an acute event. That should narrow down what type of dementia, if any, he has. They may want to check his heart, too. The behaviors you notice, these sudden episodes, could be caused by small blood clots temporarily blocking some blood flow in his brain. As you note, the doctor's visit should sort things out. He's definitely going to need some assistance with his meds as it's not good if the blood thinner gets out of whack--if he's not able to keep track of dates/time/numbers at this point then a daily pill organizer box won't work. What about having an aide come in to make sure he takes meds and eats? They can do light housekeeping and fix lunches, etc, so that would be less to worry about.
Your grandfather sounds like a wonderful guy--would he considerr a move into assisted living (to manage pills & meals) as it would give him the opportunity to be more social with a peer group? Good luck!
Pre-warn the Doctor by letter or an appointment on your own first. Mention his Medical history: memory, mini-stroke etc. Mention his Social history: He lives alone. Only family support is you.
Once Grandfather has his appointment, the Doctor can check his blood pressure but can also start some casual questioning. A good Doc may not lurch in instantly with a mini-cog exam but get him talking, assess his reasoning & memory + very importantly, keep his trust.
We can't control how the Doc will act of course.. The aim may not be to get a sleu of referrals for umpeen costly specialists, but a feel for what he would like for his future. Scans to show a past mini-stroke are useful in their way - especially for dx & correct meds - but getting him help with his ADLs will be the future.
Referrals for Area of Aging type services may help you with that. Explore what free/cheap home help options he can receive to keep him at home as long as possible or safe.
A medical exam and getting him to see a neurologist and or a neuropsychologist would be a great step.
I strongly urge you to look into Memory Care for him or if possible have caregivers come in and handle most of his care. Maybe starting at 7 or 8 AM and continuing until 7 or 8 PM. If he gets up and wanders at night then having someone at night can be a big help. All of this costs $$.
If he is diagnosed with dementia he can not or should not be living alone. AND he can not be driving. Given that you suspect a mini stroke he should not be driving now.
It is great that you have taken this on but do not let it overtake your life.
If your grandpa is a Veteran contact the local Veterans Assistance Commission in your area they can help get the information as to when and where he served to determine his "level of disability". That can mean a LOT or not depending on where and when he served. You could also contact the VA but I think you would get more help from the VAC and their services are free.