Experience to share - Moved DM to Assisted Living

[ncbill]

A year ago, I might have felt the same way. Now...I am a little more cautious. A family member broke her hip and had surgery. Before and soon after surgery she was a mentally competent 88 year old. A little forgetful, but basically fine living on her own.

Within about 6 weeks after her surgery, she almost quit eating and mentally declined (I saw her a couple of weeks after surgery and she was mentally OK, but being picky at eating). She kept declining mentally. Within about 6 weeks after surgery she was at home with 24/7 caregivers so she wouldn't wander off. She was not eating and seemed to have clear dementia.

This went on for months. Eventually the caregivers got her to eat a little more (she had lost weight to well under 100 pounds -- she is thin anyway but this was really bad). She was eventually admitted to hospice (still at home) due to her failure to thrive and what seemed to be dementia.

Eventually, she was moved to a nursing home (about 5 months after surgery). By then she had gained a few pounds from her low. She was still too thin but was eating a bit better.

Anyway -- long story short -- within a month or so it was clear that her "dementia" was gone. She was basically back to normal.

It seems like that really never was a true dementia (despite doctors thinking that it was). It was delirium perhaps caused by the anesthesia and trauma and then exacerbated by her not eating.

The point is that the only real way anyone could know this wasn't a true dementia was by the fact that she did recover mentally over a period of months. She did have an infection at one point during this and I am sure took an antibiotic. I am glad she did! Today, she once again lives at home alone without dementia.

The point being that there are a lot of causes of what looks like dementia. Sometimes it is something like Alzheimer's and isn't reversible. But, sometimes it can be due to medications, or surgery, or trauma, etc. and is reversible. I would want to make really, really sure it wasn't reversible before deciding not to treat another illness.

Did she ever actually see a neurologist?

Only formal neuropsychological testing under the supervision of the above specialist should be the standard for a diagnosis of dementia.

I will say...most people who see their loved ones heading down that road hold out hope that it's a vitamin deficiency, or over-medication, or NPH, or an infection...but unfortunately it's usually dementia, not something reversible.

Should that be my journey in the future, I wish it to be as short as possible, hence my very restrictive healthcare POA.

 

[gwraigty]

The point being that there are a lot of causes of what looks like dementia. Sometimes it is something like Alzheimer's and isn't reversible. But, sometimes it can be due to medications, or surgery, or trauma, etc. and is reversible. I would want to make really, really sure it wasn't reversible before deciding not to treat another illness.

I agree. My grandmother was assumed to have dementia by the nursing home staff when she temporarily lost the ability to speak properly. Her words were unintelligible. In time, she regained her power of speech. It was then determined that the problem had been a small stroke. She passed at the age of 90, of sound mind until the end.

My step great grandfather, who I saw most every week, didn't know who I was all of a sudden. It was shortly after my great grandmother had passed and he was 94. It seemed natural to assume he was starting down the path to dementia. He came to live with us when he was 99. His mental state was perfectly fine. There was no official accounting for it.

I've seen a couple of relatives, one elderly, one not, become confused, even hallucinate, due to a combination of medications given while in the hospital. When the medication was stopped, their mental states recovered. The staff knew it was the medication, so there were no false diagnoses made.

I've also heard that urinary tract infections can cause mental confusion in the elderly. A friend of mine says this happens to her mother. They know when she has one, because she slurs her words and becomes confused.

 

[Amethyst]

Have an elderly relative with dementia, who becomes much more demented while riding in the car. Suddenly, he literally doesn't know who the driver is (his own wife, or one of the kids). Holds otherwise "sensible" conversations, that make it clear he flat doesn't recognize them, although he obviously likes them and is interested in what they are saying/asking. It's terribly upsetting to his wife.

Gets out of the car, and suddenly remembers everyone's name and relationship to him, but doesn't remember the conversations held in the car.

Just a weird disease.

 

[ExFlyBoy5]

Thanks robnplunder, for starting this thread.

It's like... we're there.... @ age 83.

Fortunately, the dementia progression has been relatively slow, but we're handling it as best we can. We watched jeanie's mom die @ 74 and my mom @ 84. Both had Alzheimers. We knew we would be facing the same thing, and tried to prepare as best we knew how. Thankfully moving into our CCRC in 2004, really helped.

We know what to expect, and have some personal insight into what we're facing. In the quiet moments, we plan... as memory and abilities fade.

Everything takes more time, and we make many more mistakes. Posting here is more difficult, takes much longer, and too often what I write doesn't make sense when I read it. A small part of trying to keep what used to be.

We try to keep some measure of social life going, by spending time with other people our age, in different stages of physical and mental ability. A place for everything, and everything in its' place... and even then, what used to take minutes takes much longer.

The changes come faster... Driving, down to very local, during the day, and taking much more concentration. Physical... surprise... picking up more than 25 or 30 pounds is an effort. Eyes get tired easily, and simple things like going for a doctor visit become a dreaded "OMG, not today" kind of chore.

That said, we've tried to plan, as best we can, for the next part of our lives. Fortunately, the worries are less intense, and the days brighter than even a year ago.

We're not looking forward to leaving our home, but realize that moving to the Apartments or Assisted living is probably in the future and (possibly) the nursing home. In any case, we know well, what to expect and it holds no fear.

To all who posted... your experiences mirror what we've seen. Good to have a perspective on the future, and knowing what to plan for.

Thank you so much for your "perspective", it's something that I look forward to when visiting ER.org

Your writing is very concise and clear, so perhaps it does take a while to get it done, but you get your point across very well.

The journey of getting older is one we all experience, and some will have a rougher road to travel than others and reading the experiences like yours gives me an appreciating for "being". Yes, things could get rough in the end...but having a positive attitude for as long as possible is certainly a good thing.

My Dad has been gone now for almost 8 months (lived to almost 91) and I miss his positive outlook on life and learning the tricks to "aging gracefully." Even when things were dire and he asked me the most painful question I have ever had to answer ("Son, am I dying?") he maintained his positive outlook up until the time he couldn't maintain consciousness...and I am convinced that this is much of the reason why his passing was as peaceful as it was.

 

[robnplunder]

Did she ever actually see a neurologist?

This is an important step. We took DM to a neurologist, did MRI scan and other tests. DW also asked for the doctor's opinion about DM's living by herself. Dr's opinion was same as ours. She can't live by herself - proper medication administration being the most serious concern among others.

 

[robnplunder]

I agree. My grandmother was assumed to have dementia by the nursing home staff when she temporarily lost the ability to speak properly. Her words were unintelligible. In time, she regained her power of speech. It was then determined that the problem had been a small stroke. She passed at the age of 90, of sound mind until the end.

My step great grandfather, who I saw most every week, didn't know who I was all of a sudden. It was shortly after my great grandmother had passed and he was 94. It seemed natural to assume he was starting down the path to dementia. He came to live with us when he was 99. His mental state was perfectly fine. There was no official accounting for it.

I've seen a couple of relatives, one elderly, one not, become confused, even hallucinate, due to a combination of medications given while in the hospital. When the medication was stopped, their mental states recovered. The staff knew it was the medication, so there were no false diagnoses made.

I've also heard that urinary tract infections can cause mental confusion in the elderly. A friend of mine says this happens to her mother. They know when she has one, because she slurs her words and becomes confused.

Dementia is a symptom of many different ailments. Finding the reasons for people with dementia symptoms can lead to improving their condition. Unfortunately, those "improving" cases are rare than being norm. As we live past 80, our brain shuts down slowly but surely. More than 1/2 of us will suffer from dementia. I have been taking steps to develop good habits to put off dementia as long as I can.

 

[Teacher Terry]

Thankfully not one person in my family ever had dementia.

 

[Dreaming of Freedom]

Did she ever actually see a neurologist?

Only formal neuropsychological testing under the supervision of the above specialist should be the standard for a diagnosis of dementia.

I will say...most people who see their loved ones heading down that road hold out hope that it's a vitamin deficiency, or over-medication, or NPH, or an infection...but unfortunately it's usually dementia, not something reversible.

Should that be my journey in the future, I wish it to be as short as possible, hence my very restrictive healthcare POA.

My mother started having all sorts of strange issues that doctors could not diagnose for 6 months...until she finally got in to see a neurologist. Unfortunately, he correctly diagnosed my mother with Progressive Supra Nuclear Palsy. Just 2 months later, she could no longer physically take care of herself at age 57. I got her into a nursing home as quickly as possible or she was going to die. She only lived 18 months after her diagnosis, passing away at age 59. Consulting with a neurologist is always a good idea! There are so many things that only they can properly diagnose and/or other doctors have not even heard of.

 

[PoorOldCountryBoy]

OP, Role reversal is tough. It is always emotionally traumatic and many of us have gone through the same things with our parents. Bottom line is it needs to be done when more structure is needed for your parent's safety. In my case it was about 6 months before things got settled, but that was due to DM's conditions going in that needed stabilization. She had a decent 2.5 years more, not thriving, but certainly coping well given the health issues.

 

[robnplunder]

Just got back from another visit to DM & her doctors, including her neurologist.


Good news & bad news: She has completely adjusted to the assisted living place. No reported health issues for 4th month. But her appetite is back and she gained 10 lbs. Obesity has been an issue for her diabetes, high blood pressure, and dementia problems. Knee pains returned with weight gain. Doctor also confirmed that DM is at early stage of Alzheimer.


In conclusion, moving her to the assisted living place is success, and very timely. Given her condition, she could not have lived by herself without putting herself in danger.

 

[Texas Proud]

Just got back from another visit to DM & her doctors, including her neurologist.


Good news & bad news: She has completely adjusted to the assisted living place. No reported health issues for 4th month. But her appetite is back and she gained 10 lbs. Obesity has been an issue for her diabetes, high blood pressure, and dementia problems. Knee pains returned with weight gain. Doctor also confirmed that DM is at early stage of Alzheimer.


In conclusion, moving her to the assisted living place is success, and very timely. Given her condition, she could not have lived by herself without putting herself in danger.

One of the things you will find is that it does not matter what you say you want for dietary restrictions.... they will give her whatever she wants...


Also, because of lack of movement weight will only get worse...

 

[RetMD21]

What I decided to do was to retain a storage locker for things that she may still want. Recall that I was making the initial sort but we could switch thing. She was much more comfortable with this decision as opposed to have to sort everything up front.

Did this with my DM when she moved from "independent living" to AL. She forgot about the stuff in storage and I was able to give it away and close out the storage after a year.

 

[robnplunder]

Did this with my DM when she moved from "independent living" to AL. She forgot about the stuff in storage and I was able to give it away and close out the storage after a year.

I am doing the similar although I had to get rid much of DM's stuff.

 

[Potstickers]

Have an elderly relative with dementia, who becomes much more demented while riding in the car. Suddenly, he literally doesn't know who the driver is (his own wife, or one of the kids). Holds otherwise "sensible" conversations, that make it clear he flat doesn't recognize them, although he obviously likes them and is interested in what they are saying/asking. It's terribly upsetting to his wife.

Gets out of the car, and suddenly remembers everyone's name and relationship to him, but doesn't remember the conversations held in the car.

Just a weird disease.

After DM's (severe) stroke, when she regained the ability to speak, she could spell each of our names out loud perfectly, but could not say our names at all. The brain is really, really weird.

 

[Scuba]

Just got back from another visit to DM & her doctors, including her neurologist.


Good news & bad news: She has completely adjusted to the assisted living place. No reported health issues for 4th month. But her appetite is back and she gained 10 lbs. Obesity has been an issue for her diabetes, high blood pressure, and dementia problems. Knee pains returned with weight gain. Doctor also confirmed that DM is at early stage of Alzheimer.


In conclusion, moving her to the assisted living place is success, and very timely. Given her condition, she could not have lived by herself without putting herself in danger.

Glad it is working out well.

 

[gerntz]

It's been two months now and DM is happy in the new place. She has new friends, more activities, and definitely less lonely. She became physically healthier, too. Things worked out well, knock on wood.

Good deal. And she probably won't remember the old apartment in another few months.