What is your experience with dementia?

Yes, both my parents had dementia symptoms and eventually I had to let go. I just found working full day and being single it was the best thing for all concerned. I still feel guilty about it, I wish it could have been different. I reckon with a very strong support network and helpful community and friends people can stay at home with dementia. I didn’t have the personality either to cope with it.

I forget…..

My mom supposedly had dementia, but honest to God, I don’t know if it was dementia or the drugs they put her on. The drugs seemed to make everything worse to the point she hallucinated.

Her problem, originally, and which I grew up with, was that she could be such a ditz. I guess when she hit 70 they decided to call it something else.

She was dead within 3 years.

At the seniors complex where I now live, there are a few residents with on set of dementia which went downhill very fast , over the last few months.
She got tested again and she is full blown Alzheimers patient at an institution.
Just before that, she had a bad habit of touching everyone inappropriately, and grabbing the men by the hands ( fraile 85 year old who used a walker).
After she was institutionalized her daughter discovered that she had given away a large portion of her savings to telemarketers who pestered her for money.
She was allways broke “for some reason” (telemarketers) and started to rely heavilly on the other residents whom paid for her meals or took her by car to places , functions, etc.
At public function say a Funeral she did inappropriate things there as well.
Now she is settled in a routine where everything is provided for her and her meds are
speciffically for her problems.
Previous to that she was on meds for physical and mental problems, but because she could not remember when or IF she took them she became a danger to herself.
Her daughter is relieved and stunned at the same time as she did not know that her mother was deteroriating this much.
She feels better and hopefull as her mother has made friends at the institution and has regular activities to occupy her time.

My mother was diagnosed with senile dementia which manifests different symptoms than Alzheimers,

She was already well into her 90’s and living in an independent unit of a staged care community. We had a caregiver come in for several hours every week-day morning and my sis, bro-in-law and I dropped over at least once a week to deal the following issues:

Trips to doctors and dentists
Refills of Rx’s
Fine-tuning wardrobe, necessary food (breakfast and snacks only) and paper and toiletry supplies.
Some checkers and double solitaire and general chivvying.

We kept post-its, notes and announcements everywhere.

Mother could dress herself, use the toilet appropriately, brush her teeth and wash face; she was able to take a shower as long as care giver was in the bathroom supervising safety issues.

Mother also remembered when to get on her walker and go to communal dining room for lunch and dinner. She never got lost and never behaved inappropriately at communal meals; was just very quiet (but she also had hearing problems.)

She never got angry or lost her temper or had tantrums, which often happens to Alzheimers’ patients.

She wanted desperately to stay in her apartment with her things and privacy (most of the time). So we honored that.

No simple answer to your question; if the wife is still comfortable with and has the energy to do the daily caregiving, then it is her call.

@gailcalled I know it’s her call. But she leaves him alone while she works (part-time), which I believe is dangerous. I’m trying to (gently) help her investigate community resources and consider at what point, if any, she will move him to a nursing home.

That’s great that your family was able to support your mom living at home.

@Cupcake: Is he allowed to turn the stove on? Is he able to wander outside? Does he have balance problems, and, if “yes,” has he fallen?

How does he pass the time when he is left alone?

Can you document your concerns and have a chat with his doctor about other resources or get a social worker to start to observe and make recommendations?

I worked in an assisted living facility once, for about 6 months. Yes, we had several residents with varying degrees of dementia. One little lady who was in her 90’s always claimed we had not made her breakfast about an hour after she had eaten. We would gently remind her and try to jog her memory, ” Isabel, don’t you remember you had toast and jam and eggs?”

She would not recall of course, sooo, we made her a 2nd breakfast. lol
Another woman would repeat herself constantly, and would tell you details of her visits with family when you had been right there, listening and interacting the whole time.
Not a laughing matter certainly, but, very exasperating. The repetitious repeating of the same things, over and over and over and over again.

It got to the point where I could recite, verbatim, what they would say next, depending on the time of day.
Much more difficult for caregivers to cope with than for the person themselves IMO.
A mixed emotional bag, everything from compassion to extreme irritation.

One of my grandfathers died in his own shit. When we had to clear the flat, you could smell the stench even with all the windows open.

@gailcalled I think he’s more likely to not eat when alone than turn on the stove, but there is nothing preventing him from turning the stove on. He is able to wander (he is finally not driving, as far as I know), but has not done so. Although, he has gotten into a few minor accidents (blow out tires) in the past year and has wandered a bit from scene. He has woken up confused a few times and tried to get out of the house (or hotel room) naked, but his wife was able to prevent him from leaving. His balance seems fine when walking, but he has fallen out of bed. He seems to be messing his pants more frequently.

He naps and watches television when alone.

My grandparents, who have died within the last couple of years, used a geriatric physician who made house calls. I encouraged my in-laws to consider switching to him, but my father-in-law “got upset”, so they didn’t switch. There is no social worker (or any other resource) yet involved.

There can be some light, funny moments with dementia.

What often happens with people who have dementia is that they become increasingly agitated, frustrated, confused and anxious as they understand less and less of the world around them.
Medication can help with the above symptoms.

It may be helpful if there is an adult day care program in the area that they can go to, maybe not every day, but a few days per week. That helps the loved ones who take care of them and it gives the person some stimulation, socialization and helps to tire them out.

@Cupcakes; The loss of bowel control indicates more than senile dementia and may be the deal-breaker, if you can get his wife to think about what’s best for both of them.

During my mothers four years with diagnosed dementia (she had it longer, we are sure), she never had any kind of bowel or urinary loss of control.

@gailcalled He has Alzheimer’s. He gets very frustrated, repeats stories relentlessly and has forgotten his daughter (who he never saw often). Recently, he has not known who his son (my husband) was a few times and my MIL said he has forgotten her name a few times.

I chalked his bowel issues up to lactose intolerance/age (he’s mid-90s), but they could certainly be Alzheimer’s related.

His wife (mid 60s) thinks is her job to take care of him (which is very sweet and kind of her) and that since “nothing is physically wrong with him”, he cannot go to a nursing home.

My mom developed bowel issues after they put her on the meds. Another side effect, one that was humiliating and devastating for her.

@Cupcake “Nothing is physically wrong…”? Wow. I know you know how wrong that is, but it’s like, there was nothing physically wrong with Ted Bundy, either!

@Cupcake
Does your inlaw have neighbors or fiends to look in on them once in a while?
Enlist their assistance and have them call you or someone who lives close to help as well.

My grandmother lived with dementia as she got into her 90’s. When it first started, she was just super, super mean. It was like she no longer had any kind of filter and would say whatever she wanted to anyone around her. She went from adoring my aunt (her son’s wife) to hating her with a passion and she did not hesitate to tell anyone about her loathing. My grandfather moved her to a care facility after a couple of years when he was no longer able to care for her himself. She had very few physical issues, but with the dementia taking a stronger and stronger hold of her, he just could not handle the situation alone.

Once she moved into the home she spent a lot of time furious with her husband (my grandfather) and letting everyone know it. As the years passed she got further unhinged from reality and had fewer and fewer lucid moments. We visited often during her last few years and I was often confused for my sister or even my mother (who by that point had been dead over 20 years). Her stories were always awesome! My boys still remember her telling them all about the hat shop/bowling alley/tennis courts she was opening with her husband – who was one of her carers at the home and less than a third her age! As the dementia progressed she did get nicer and less nasty to everyone.

She definitely got better care at the facility where she lived then my grandfather would have been able to provide at home. He was the same age as her, and while he is still spry at 96, caring for her was beginning to take its toll. Now that he is 96, my grandfather has fewer moments of lucidity himself. I don’t think he could be diagnosed with dementia, but I do think old age has caught up with him. He is in an wonderful assisted living facility where they prepare his meals, his meds, and handle his needs. I am fairly certain he would be unable to live on his own at this point.

@Cupcake Wait…does his wife think he CAN’T go to a care home because there’s nothing physically wrong with him? Like, a care home won’t accept him?

I worked with Alzheimer’s sufferers as respite for their families/carers & the whole thing was a very humbling experience, very rewarding & absolutely no regrets.

My dad started to lose his mind, and decided to take his own life. I really do not blame him. It is the one affliction for which there is no prosthetic device or physical therapy.

@josie Neither do I. I am all for euthanasia if the going gets really bad. I do not believe in forcing others to suffer to appease our own neurotic inabilities to cope with and handle death.

@cupcake: I chalked his bowel issues up to lactose intolerance/age (he’s mid-90s),

If that is the case, it is easily remedied by removing all dairy from his diet and the house. It is really your husband’s place, as the son and step-son, to step in, step up and step on it.

Since you clarified that your father-in-law has been officially diagnosed with Alzheimer’s, you know what will happen.

He will get worse; has his wife read the literature? Has his doctor discussed the ramifications down the road with her?

Yes. My grandmother has been going through some exhausting and perplexing changes during the last three years. Her physical health is the same as always, but getting her to take care of herself- or even let someone else take care of her- takes much more patience and negotiation than before.

Have you ever seen “My week with Marilyn?” Imagine that personality, the fragile ingenue who is always ill and loves/ can’t handle the limelight. Now imagine an eighty-year-old woman who has never grown out of that personality, and over the years has become paranoid and stubborn to boot. She thinks everyone is trying to steal from her or is “being mean” to her, and that many of the men she meets wants to marry her. In every story she tells, she casts herself as a misunderstood martyr. This has always been the case, but now it’s hard to get a clear story out of her to begin with. She feels wronged and can’t explain why. She becomes flustered and helpless at simple things, like remembering whether she took her medicine today or trying to find a pen.

Several of my patients attend adult day programs and that seemed beneficial. A colleagues grandfather believed he was going to work when the bus came and got him, it motivated him because it gave him a sense if purpose.

I heard of a program that helps the families and caregivers on the radio, but I don’t recall the name. I’ll see if I can find it.

Found it! It is called Home Instead.

Wow guys… great stories! Thank you!

@Dutchess_III I have no idea. I think that she thinks he is not allowed at a nursing home, but I’m not sure.

@gailcalled Not that it matters, but he is the son of both… no step-son. This guy has had issues with milk forever and it’s always been in the house. I don’t see why she would change that now. She has diabetes but still eats junk. I have no idea what she knows about the disease or what their doctor has discussed. Mostly we hear, “Wow, he’s in perfect health for a <90-whatever> year-old.”

We’ve told her that he shouldn’t drive. We’ve told her that he shouldn’t be left alone. We’ve told her that a police officer (involved with his last car tire blow-out) said that if he can’t be watched around the clock he should be in a nursing home. We’ve told her that he could wander or fall and get hurt. We’ve encouraged her to get an in-home aide or take him to adult daycare. She’s not there. She’s not changing anything. I feel like he needs to get hurt or get lost before anything will happen. Is it really my husband’s job to prevent that?

Is it really my husband’s job to prevent that?

He certainly is part of the family unit. Since telling, advising and encouraging her hasn’t worked and there is increasing risk or something serious, I would say it is his job to do more. Such as finding out from the local Social services organization just exactly what his options are.

Allowing a 90-year old to eat dairy products that render him incontinent is abusive behavior, as is her negligence and indifference and delusions.

If it were a child at risk, you would intervene. I know that the prospects are exhausting and not your first choice of pleasant activity, but at least your husband could call your dad’s doctor to find out 1) the medical issues, 2) the ethical ones and 3)the possible solutions.

I am nagging, I know, so this will be my last word. During my mother’s 4 or so years with just the dementia part of Alzheimer’s, I did spend time in the Alz. wing of her staged care community to make some assessments and to confer with staff members about creative ideas and home care for my mom.

One last thought; does your husband have other siblings or aunts and uncles? There is strength in numbers.

@Cupcake if that’s what she thinks she is absolutely wrong. Make sure she knows that. I’m pretty sure that anyone over 65 (and even younger) are “allowed” in nursing homes at their own discretion.

It’s anyone who cares about him’s job to prevent it. Wow…that was clunky!

^^ Preventing disaster is the job of anyone who cares about him.

I figured you’d show up! :)

(Like a moth to the flame.)

tru dat!

Well… this would all be working very differently if it was my family. But they are my in-laws. They do things differently.

I’ve thought it over for awhile and I think that referring to feeding him lactose as abusive is overkill. For one, fecal incontinence is a symptom of Alzheimers. That could be all that is going on. For another, I don’t think it’s worthwhile to restrict a 96 year-old’s food. Would I do it? Probably. But I don’t think that my MIL feeding her husband the food that he enjoys and dealing with the repercussions with kindliness and patience is abuse.

I have no idea what information they have from the physician. I will encourage my husband to go to his father’s next medical checkup. I don’t think my husband would ever call the physician. I think he would feel that it is going behind his mother’s back. The physician can’t remark on my FIL anyway. In the past, I encouraged him to call the physician to request that his father’s driving privileges be taken away. He wouldn’t call. But eventually my MIL stopped letting him drive.

The door is open for us to help my MIL with finding resources. Is she learning and researching as readily as I would? No, not even close. But I think she’s (slowly) plugging along. And she is very kind and patient. Seriously. Like next to sainthood. Do I agree with her leaving him home alone? No, not at all. But nothing bad has happened yet. I think that she is most worried about him becoming upset and combative if he was brought somewhere new. While a legitimate concern, I think the potential benefit greatly outweighs the potential upset.

No other family.

My mother has dementia now, if you would like to discuss it, pm me.
It is much more insidious than Alzheimers. With dementia, they know they knew more and know they are losing their memories. It concerns them greatly that this is happening. Mom is 81 as of Wednesday and has been deteriorating for the last 6 years. Actually, she probably started before that, we just did not recognize it as such. She seems to cycle her entire life in about a six hour period. I can answer the same questions four or five times a day.