How do I handle a person with dementia? (spouse, assisted, attention)

[Wembley]

Are you familiar with Sun-downers syndrome? Its a form of dementia which I had not heard about till my Aunt told me about it since my grandmother (her mother) shows symptoms of it. Basically it causes someone to want to leave the house and wander in the evenings. My grandmother would just walk out the door after supper and take off for a hour or more down the street without telling anyone, other times mom would find grandma sitting out on the porch at midnight in her nightgown staring up at the stars and not able to explain what she was doing. Your wife may have the beginnings of this. I would talk to her doctor as you can't be expected to just go all the time and you will need to nip it in the bud somehow. A friend's mother sounds like your wife where she demands to be taken out to shop all afternoon and evening sometimes till midnight every day when she really has no need to buy anything since she eats out so all the groceries get thrown away because they spoil. He won't do anything about it so now he is stuck driving her around every day and he can't get a job because of that and is going broke. Do like people with dogs and small children do like some others said and find a physical activity to wear her out like water aerobics or tai chi for the elderly that way maybe she will be too tired to want to wander.

[Scotty011]

I thank all of you for the advise and information that you have shared. Is it common for a dementia patient to holler and cry and hit themselves on the face in frustration? This is occurring now and it is very disturbing.

[Sam I Am]

Crying and shouting, yes - hitting themselves may not be unusual, but it could certainly open a can of worms for you. You need to document and contact her physician for possible medication as well as contacting a social worker if you have one and report this. One day she may need to go to the hospital and someone will ask YOU about the bruises from her self-inflicted wounds, and it may not be a pretty conversation. I know you don't want her in zombie land, but it sounds like things are ramping up.

Have you managed to get her on some medication, or found a way to distract her? Can you see all the warning signs that an injurious episode is getting ready to happen? Any particular time of day, any precipitating event you can pinpoint?

My heart goes out to you. My MIL would go completely off the beam and imagined all sorts of horrid things (for which she felt the need to call 911 on a regular basis). She didn't want to hurt us, but went after my brother-in-law a couple of times. Which was okay by me, but that's another story

My concern would be not only hitting herself, but hitting herself with an object and doing some serious harm, especially since she is hitting herself in the head and face.

Is this getting to be more than you can reasonably handle at home? The walking and agitation and hyperactivity has got to be wearing on you....I'm so sorry.

[MotleyCrew]

The last three months of my mom's life were the hardest and when most of the medications were not working any longer to ward off the confusion and hallucintations. She had COPD and a heart condition so I asked the hospice nurse about morphine as I had read that it did help the heart and any pain they had and she got the ok from mom's doctor. Morphine is your best friend as it not only calmed her down it did help her sleep at night for a while, then another run with the night confusions. You have to find the treatments that will help your loved one and give you some rest at the same time. I was alone in the sense that it was my duty alone to deal with her around the clock as my husband had to work on projects. When she finally reached that simi comotose zone with brief bouts of lucidity, I was able to rest a bit more at night. It was time for her to go and time for me to let her go. Your loved one will reach that point where they are not able to walk or talk and sleep most of the time. Just stay with them, keep them comfortable and pain free as possible. Tell them they are going to a very special place where friends and loved ones are waiting for them. My mom smiled the night before she died when I told her we were packing and going back to our old house in CA. I think she is there right now.

On another note: You are not super human and will lose your cool, not in the abusive sense, but only that you will get frustrated with your parent at times, mostly due to exhaustion. Just know you are not doing anything wrong and it is part of the package. As a wise man once said "this too shall pass."

[birdinmigration]

Originally Posted by Wembley

Are you familiar with Sun-downers syndrome? Its a form of dementia which I had not heard about till my Aunt told me about it since my grandmother (her mother) shows symptoms of it. Basically it causes someone to want to leave the house and wander in the evenings. My grandmother would just walk out the door after supper and take off for a hour or more down the street without telling anyone, other times mom would find grandma sitting out on the porch at midnight in her nightgown staring up at the stars and not able to explain what she was doing. Your wife may have the beginnings of this. I would talk to her doctor as you can't be expected to just go all the time and you will need to nip it in the bud somehow. A friend's mother sounds like your wife where she demands to be taken out to shop all afternoon and evening sometimes till midnight every day when she really has no need to buy anything since she eats out so all the groceries get thrown away because they spoil. He won't do anything about it so now he is stuck driving her around every day and he can't get a job because of that and is going broke. Do like people with dogs and small children do like some others said and find a physical activity to wear her out like water aerobics or tai chi for the elderly that way maybe she will be too tired to want to wander.

Can I just clarify this? There is no such thing as "sun-downers syndrome" as a "form of dementia". Sundowning is a very typical manifestation of dementia, in which all the dementia behaviors become severe or pronounced.

An odd and fascinating aspect of sundowning is that it occurs during certain phases of the moon (a new moon or full moon) whether or not the sufferer can actually see the moon, changes in weather (such as sudden thunderstorms), or in some individuals certain times of the day or night, hence "sundowning", such as you'd experience with a baby with colic. Getting up in the middle of the night to "go shopping" is very very typical.

People who have never experienced this might wonder, why is the friend you mentioned running himself ragged just schlepping Mom all over on her whim. They do not know how a person with dementia can badger, bully and go on like a broken record. I have residents who will go on a loop: "what time is it?" You tell them. "No, but what time is it". Again you tell them. "But what time is it?" This could go on until you run screaming from the room. Same thing with the exit-seekers, they will stand by the door, handbag and coat in hand "Ready to go?" No, we are not, you answer. "Time to go?" This goes on and on...until you take them somewhere. In the friend's case, he needs to learn some robust and consistent redirection techniques -- he should contact the Alzheimer's Association immediately before he completely loses patience. Alzheimer's Association They have a 24-hour hotline.

All due respect, 'water aerobics' doesn't actually wear out people with dementia. Some of them have more stamina than Chuck Norris (lol), and they wind down when they wind down. I had one wanderer that would walk and shout and scream curses in the worst language, and also, she kept her hands out, and would grasp anyone walking by, and hold them and not let go! You could walk with her and walk with her, and finally she would fall down on a couch and pass out, an hour later, she was awake and on the move again! 24 hours a day she did this!

Sam I Am -- you gave excellent advice to the person whose loved one was doing self-abuse. This MUST be video-documented!!! People who have never seen this would not understand how much a person with dementia can injure him/herself. He should take out the smartphone and video these episodes. That should be taken to the dr. of the dementia sufferer to be medically documented. This is super-important. He could well be arrested for elder abuse, even though he didn't do it! I have seen residents with dementia smear themselves and their apartments with feces and say "I was trying to clean up." If you intervene on that, guess what? You get it too! I have seen residents pour hot coffee all over themselves or someone else. I have seen residents up-end super-heavy furniture, I have sure seen more than my share of physical altercations between residents. I have seen a resident take a dislike for another resident for unknown reasons (so much for people with Alzheimer's not remembering other people!!!), and say "I HATE that woman" and bash the other woman, who did nothing to provoke it, with a cane or walker. All of these things are within the range of dementia-normal.

I had to chuckle at your description of MIL calling 911, oh yeah, they do that, all right! Some dementia sufferers can explain to you or anyone (including emergency services) in very cogent terms, sounding perfectly reasonable, that so-and-so is stealing from them, that they have been kidnapped, abused, or their family members are conspiring against them. People who are unfamiliar with this will go -- ohmygod, this poor woman, her neighbor has stolen her wallet, and her daughter has locked her out! And then you go to her apartment, there is the wallet in the closet, and the keys on the bed. And they tell variations of this same story to anyone who will listen. I had some residents that were such crafty escape artists that they would hook a new employee, tell them that nobody will let them go to the library. The "Newb" takes them to the library, the resident says I have to go to the bathroom, and makes for the nearest exit. While you might be thinking -- wow, that doesn't sound like that person has dementia!, understand please that if they get outside, they are completely disoriented, and they walk in the street, they can't remember their name, and they say they are the victim of kidnapping. Which is why they wind up in a locked unit in the first place! They have panicked their families too many times.

We who are experienced in dementia care do not find anything you family members voice to be weird in the least. Believe me, we treat our dementia residents with love and a huge dollop of sense of humor! We accept everything. We get it.

[Padgett2]

The only thing that you can be sure of with dementia patients is that they are going to get worse. And they will do unexpected things.

It's sad, terribly sad. That's why I try to explain that the caregiver should try to locate the best nursing home that's available in the area before it's needed. There just isn't anyway of knowing when they MUST be put in an institution with nursing care. Maybe they never will, but this is one time, that it's best to be prepared. You don't want that Home that always has plenty of beds. There is usually a good reason why they do.

[kremit]

Originally Posted by Scotty011

I am a new caregiver for my wife who has dementia. I am finding this a very difficult task. She wants to be on the go all day and does not want to stay at home for five minutes at a time. She does not calm down until we eat dinner around 5PM. How do I make her stay at home? I have dead bolts on all doors but she constantly fights me to get out and I finally give in. Any and all suggestions appreciated.

Originally Posted by Sam I Am

Do you have the ability to get her into some form of adult daycare to give yourself a break, as well as keeping her active? What level of activities is she still able to do, and does she still wish to interact with others? Is there a pool close, and would she swim? It's so good for the body, keeps the coordination going, and might wear her out I don't say that to be ugly, just that if she is exercising she might get some of the physical stimulation she needs in order to calm down maybe a little sooner in the afternoon or evening.

My grandfather was the same way. He didn't stop in the Navy, he didn't stop when he was at home. I know she setup a workshop for him and he would build things ALL THE TIME. They probably spent more money on wood then all bills combined. I agree with getting out and doing an activity not going to random places. God bless your wife, you, and your family.

[birdinmigration]

Originally Posted by Padgett2

The only thing that you can be sure of with dementia patients is that they are going to get worse. And they will do unexpected things.

It's sad, terribly sad. That's why I try to explain that the caregiver should try to locate the best nursing home that's available in the area before it's needed. There just isn't anyway of knowing when they MUST be put in an institution with nursing care. Maybe they never will, but this is one time, that it's best to be prepared. You don't want that Home that always has plenty of beds. There is usually a good reason why they do.

Such good advice! Will rep! Yes, all the good residential facilities have waiting lists. It is better to put a name on a waiting list with a facility you are comfortable with, then have to scramble around because your family member has a crisis, and wind up with a situation that none of you are comfortable with.

We should probably start a new thread with types of residential facilties.

[Wembley]

Originally Posted by birdinmigration

Can I just clarify this? There is no such thing as "sun-downers syndrome" as a "form of dementia". Sundowning is a very typical manifestation of dementia, in which all the dementia behaviors become severe or pronounced.



All due respect, 'water aerobics' doesn't actually wear out people with dementia. Some of them have more stamina than Chuck Norris (lol), and they wind down when they wind down. I had one wanderer that would walk and shout and scream curses in the worst language, and also, she kept her hands out, and would grasp anyone walking by, and hold them and not let go! You could walk with her and walk with her, and finally she would fall down on a couch and pass out, an hour later, she was awake and on the move again! 24 hours a day she did this!

All I know is after my aunt told me about Sundowners I looked it up, this was several years ago, and the site I looked at said it was a form of dementia that not all patients experienced.

When I used to go for water aerobics for fibromyalgia there WERE ladies in there we were told had dementia and we were all just warned to kinda look out for them if they started acting odd to let the teacher know so they wouldn't hurt themselves and told to not take it personally if they said anything harsh. I was the only young person in that water aerobics class as the rest were old ladies who said the class wore them out for the day and they would have to nap afterwards. It was very tiring; it wore me out too.

[Wembley]

Can anyone address the signs of dementia starting? I'm wondering this with my own dad as there's some subtle things showing. It makes me wonder if it isn't really subtle in some folks for awhile like in our area the famous basketball Pat Summit recently retired because of dementia and she wasn't that old. I think early 60's, when they interviewed her she came across perfectly normal & highly intelligent. So there must be subtle things affected her abilities for her to be asked to retire.

Also is it true people will act the opposite of their normal personality if they get dementia? My doctor told me this as she was relaying a story how her MIL used to hate her & was very ugly, but after she got dementia she behave really sweet towards her. So oddly the dementia she said had turned into a pleasant thing in that respect. Then a relative of mine who was always a quiet, mild mannered man turned violent after he got dementia and since he was 6 ft 5 his wife could not safely handle him so he had to be locked up in a special Alzheimers unit as he was so dangerous. He died just a few weeks later.