I am in a conundrum, I am doing my best to allow Mother to age in place. She has Vascular Dementia, her short term memory is gone. She does keep her residents somewhat clean, baths and feeds herself and is adamant that this is where she wants to be. I have a lovely caregiver / next door neighbor that drives her to the store, gives medication morning and night and in general makes sure she doesn’t wander off.
Stove is disabled, heating and cooling is all electric. We try to get down once a month to be sure she is in a good place and the caregiver is doing well. I pay her bills we have 3 cameras on her and the caregiver on site has a baby monitor should she be in distress and need help. To date we have had no issues and I do not wish to answer to a government agency in honoring her wishes and providing good health care.
Would you advise canceling the Neurologist appointment in August or will that just encourage him to have her evaluated, what to do? Input appreciated, please!
I'm not sure how to help but keep in mind a Govt Agency can't make Mom move. Is this an aged care needs assessment? Or is this Adult Protection Services? I'd imagine the agency will ask questions of Mom, yourself & caregiver if there, assess care needs & make recomendations.
It sounds like you have already added much for safety (caregiver, medication management, shoping assist, cameras) & reduced known risks (stove disconnected).
Does Mom have a diagnosis of Vascular Dementia or Mixed / with Alzheimer's / other dementia as well? I ask as this may help your longer term planning. Vasc Dem can be stable for many (until the next step down) but Alz will keep progressing.
Aging in place is what Mom wants & your aim. I always say to slightly adjust your aim to *Aging in place - as long as possible*.
A good friend told me how she was floored to discover her mother couldn't even draw a clock when she was given a mini mental exam, this despite having her mother living with her. That's when she had to face the reality that her mom wasn't safe being left alone all day while she was at work. Your plan is working - for now. But ultimately she will get worse and her needs will increase, do you have a plan in place for that?
My late husband was diagnosed with vascular dementia in July 2108 and he died in Sept. 2020. And before he became completely bedridden in our home, he was falling all the time. There was a period between July and August 2018 when I had to call 911 9 times to have them come pick him up off the floor, and I was home with him each time. And yes I kept my husband home until his death, but I will tell you it was very hard on me. And even though he was under hospice care for the last 22 months of his life and completely bedridden, I also had to hire an aide to come put him on the bedside commode every morning so he could poop, as hospice only does about 1% of someone's care.
So while your mother would love to "age in place,"(as does everyone)there will more than likely come a time when you will have to do whatever is best to keep her safe, and that just may mean placing her in the appropriate facility. Now as far as whether to keep her neurologist appointment or not, That is up to you. At this point there really isn't much a neurologist can do for her, as there is no magic pill for any of the dementias, so I'm not clear as to why she would need to go anyway.
So I will just say, because this dementia is the most aggressive of them all, please spend as much time with her as you can, so you won't have any regrets when it is all said and done, as you can't go back and change things. And please do whatever it takes to keep her safe.
There are the predatory conservator horror stories, of course, but we'll assume (with some confidence) that your mom's neurologist isn't on the take.
The setup sounds okay to me--at least for now. But as others point out, these peaceful plateaus don’t last (that’s true for all of us, of course, and not just our elders).
A "next door" caregiver might reasonably be thought of as an "on-site" caregiver. Some homes are so big that rooms are probably farther apart than your mom's and your neighbor's house.
(I'm also thinking of the TV show "Better Things," in which protagonist Sam's mom, with encroaching dementia, lives across the street from her. If nothing else that portrayal suggests that our society is currently okay with this kind of arrangement.)
Is there anything in particular you need to accomplish with the neurologist appointment? Is there some reason you need an official diagnosis? For myself I would want such a diagnosis if, say, I lived in Canada or Switzerland and had some options. But it probably wouldn’t do much good in the U.S. beyond letting me know to get my affairs in order and fast (though it sounds like your mom is already past the “oh sh!t” stage of all of this).
The nextdoor neighbor sounds like a dream. You’re sure they are okay with the situation?
I have neighbors I’d like to help more, but I’m worried about tag-you’re-it scenarios with their adult children. I’ve seen it happen over and over again.
Aging in place is an idea that was first presented as a wonderful future for elders who need care. There were agency ads for charming and delightful young caregivers who were pictured on TV playing board games with dad, lovingly wrapping a sweater around mom's shoulders, and taking sunset walks with both of them as they left what was clearly mom and dad's own home. The reality of aging in place is quite different. Which brings up my concern about how your mom is living and whether she is actually being properly cared for.
"Keeps her residence somewhat clean." That means what? Clean enough so that roaches aren't breeding under her refrigerator where she has forgotten to clean now that she has dementia? Free of piles of dirty clothing that she forgets to wash and put away? Vacuums regularly? Throws away piles of junk mail?
"Caregiver neighbor next door." Makes sure she doesn't wander off? That's impossible unless she's with her 24/7. A hundred cameras in mom's home and someone next door who may be busy with her own life doesn't ensure that mom won't wander. Or that mom won't fall in the night and lie there until someone realizes she's on the floor eight hours later.
"We have had no issues." An issue doesn't warn you that it's on the way. Mom could be wetting her pants every day for a month and shoving them under her bed before someone notices. She could let someone in the front door because she's forgotten she shouldn't open the door to strangers.
I hope you're paying the neighbor, because she has a difficult job. It's not clear if she is the caregiver on site. But it is clear that mom needs 24/7 care now, and I suggest a memory care facility where she can have some decent recreation, friends and outings. She has dementia, and no matter how adamant she is about wanting to continue to live like a mole person in the confines of her somewhat clean home, her mind is going and she's not capable of making good decisions.
Honoring her wishes when she's in danger of taking a hike down the road and ending up facedown in a creek might not be a good idea. And with dementia patients, that happens despite the best intentions of their families.
Good luck to you.
Get your mother assessed and then either placed appropriately or hire in home help 24/7 to care for her properly. Cameras are insufficient to help a fallen elder, or one who needs immediate help. Where your mom "wants to be" and what she needs are two different matters. If you wait until a crisis hits, she'll be forced into Memory Care Assisted Living or Skilled Nursing care from the hospital anyway, once it's determined she's unable to live alone.
The best thing to do is to educate yourself about dementia so you're aware of the pitfalls your mother faces as time goes on. I suggest you read this 33 page booklet online about managing dementia and what to expect with an elder who's been diagnosed with it. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Best of luck to you.
She's not going to get 'better' and even if the Dr thinks she needs more care, he can only suggest it and give you a 'recommendation'--for placement, he won't force the issues.
I WISH my MIL had been dxed when she was last in the hospital after a fall. SIL made sure she 'WASN'T' b/c she knew that the push from her brothers would then be to have her placed in a NH and SIL didn't want them to have any ammunition.
Kinda dumb on SIL's part, b/c OB is a psychologist and one day when he was with MIL, he administered a short 'dementia' test. He said she most definitely has dementia and it's fairly well along. She is not acclimated as to day, time, where she is, what she's supposed to do. She only remembers things that happened before 1990--and she sure as heck doesn't have the ability to learn anything new.
Your mom's situation is pretty lucky for you as it works, and you have trusted people on the site...if that works and keeps working, then just take the Drs advice and keep it in her files and use it if you have to, at some point.
It is no longer about what she wants it is about what she needs as she is no longer able to make rational decision.
I would have her evaluated and go from there.
Good Luck