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Last thing I would want would be in some 'care' facility which doesn't bother to find out what sort of usual schedules their captive have and wonder why so many people resist. My grandmother left the hospital to stay with my aunt and family as soon as she could, with home visits for therapy. She didn't have long but she got to be with family and part of normal life before it was over.
For the OP, if you can't drive them to the restraunt yourself, find someone who can, and not just that. And take them out and away from which sounds like a very unpleasent place. And consider finding another place which does not treat its 'patients' like prisoners which is close enough YOU can rescue them and fight the place for their rights. My grandma regained the use of the arm most effected, and could even do knitting when she died. You think they'd have wasted any time on that if we'd have left her in the hospital?
When people feel like everyone has deserted them and their rights have been taken away, what reason is there to keep fighting, especially if nobody is in your corner.
As someone who just gets more stubborn when someone tries to push, which just insures I won't cooperate, I'd be the one they were soooo glad to send home. And I'd never willingly agree to a place where their rules were absolute, and would resist and be sure to never cooperate with anything.
The idea of stuffing people who are 'ill' because they are older into medical prisons is a terrible one, and taking away the right of choice for yourself is just plain wrong. Nobody should be imprisoned in a hospital just because they needed a little help. There's a lot of better ways of making everyone feeling better.
Take all choice from a person and maybe they just decide there's not reason to go on anymore.
For the op... find some way the parents can go out with their friends and enjoy their life, and not just lay in a bed all day because part of being alive is being in charge of yourself. And tell the people at the facility how you feel. And find someone to drive them over to the restraunt for dinner.
Your grandmother had a stroke, and she also died a few months later. She didn't suffer from increasingly debilitating dementia for years. Dementia is a total game changer.
You are acting as if it's other people who take choices away from people with dementia. It's the DISEASE that takes their options away. And then it's up to other people to try to keep them as safe and comfortable as possible (themselves and others around them) in the midst of a terrible degenerative disease of the brain.
Do you realize that as dementia progresses, the person stricken with it often loses even the ability to swallow? To BREATHE? They often don't recognize where they are, or family members. They are often delusional and have hallucinations. They forget to eat. They forget how to go to the toilet. They forget how to walk. They don't know what time, what day, or month, or even YEAR it is. They will often eat bizarre things, or flush crazy stuff down the toilet. They will often roam at night.
My MIL got up in the middle of the night and got stuck in the bathtub, naked in a tub full of cold water, and her husband didn't hear her crying out for him and found her freezing and shivering the next day. She had sat there for hours.
My mom thinks her stuffed cat is real and tries to feed it all the time. She physically fights taking a bath or washing her hair and left to her own devices soon begins to smell so badly that the smell literally lingers in the car for days afterward.
One of the people who lives in her memory care center eats paper towels. Another one does nothing but cry "HELP HELP" all day. My MIL insisted to us over and over again that she was "raped every day for three hours right there" on the sofa in the main living area. No she wasn't. And when she'd make these accusations, she'd do it very calmly and sometimes with a smile on her face, and sometimes she'd say it was the janitor and sometimes it was Cary Grant. No lie. Please.
My MIL died of Alzheimer's. She went from a woman with three college degrees and a long career in teaching, to laying in a bed unable to move or eat or breathe on her own. This was with the best of medical care. Most dementias are incurable and relentlessly progressive. If you haven't dealt with a loved one with dementia it's hard to imagine just how difficult and sad it is.
OP - Is there any possibility of finding a place where there are caregivers who speak your parents language? It sounds like it would have to have memory care too.
If you're out of state, you can't really evaluate the level of care they need - that is something that people who are familiar with them can perceive and once someone has dementia, all bets are off, as to what they might do if left unattended.
Many people get confused - actually get lost - ride around or drive around for hours. I don't think you would want that for them.
They need to be checked out of the facility by people who would then be responsible for their care - people who would make sure they are safe and that they go to lunch, or whatever, and then return to the facility within a reasonable time.
I think you need to talk to the facility so you can understand the level of care your parents need.
I have never heard of a doctor forbidding someone to go out - or the doctor dictating what the facility can or can't do - that seems crazy to me. I see doctors as consultants - not dictators. Why would he have any say at all as to what your parents can or cannot do? That should be between whomever has POW for healthcare and the facility. The doctor should just give an opinion, not be in control of people.
They weren't forbidden to go out. They want to go out on their own, drive or walk to their friends on their own. Of course they can go out if the friends pick them up. I doubt the doctor decided on his own what level of supervision they needed, it was decided when they underwent their assessments on or before moving in. The doctor is head of the team but not the whole team. Often it is easier when patient's aren't listening however to say "the doctor said you have to". We use that line often when a patient won't come to therapy. MANY old people still consider doctors the ultimate authority and will listen to them more so than a nurse or therapist saying "you have to".
Absolutely. I was told in a dementia course that a good way to handle the constant begging to go home is to say that the doctor has to sign a form. Even then complain about the doctor being late etc and very often they are content with that explanation.
That is why you have to ask for specifics at the ALF. Did one or both of them yell or swear? Raise their fist? Hit someone? Did their "fit" last 30 seconds, two minutes, or five minutes? Did it happen once that day or multiple times?
Another thing to consider is I bet that you and your sister are very accommodating to your parents. You know them well so you anticipate doing things that make them happy so they are their "usual gentle, jovial selves" with you. How often do they make requests and you say "No, you can't do that" or "No, the doctor won't let you"? I bet that it is pretty unusual for you to tell them "No" or "No" multiple, multiple times and actually stand in their way and block their exit from a door. Seriously, when was the last time that you did that to your parents? If the answer is "Never" or "Once, months ago" then you have no idea how they would react if you did that now.
Also, it can be a matter of amount of time that you spend with them. If they go out to dinner with their friends I bet that your parents have to be on "their best behavior" for 60 minutes or maybe two hours. But at the ALF, they need to be on their best behavior 24 hours a day, for weeks on end with many, many different staff members and other residents.
Our son "thought" that he understood his dad's dementia because of seeing him a couple hours a day during short vacations (he stayed with his family in an airBNB). But it was not until our son helped care for his dad 24/7 for three weeks straight at our apartment that he actually started to "understand" the full extent of his dad's dementia.
It can also be a matter of time of day. Sundowning is very, very real for many people with dementia. Your sweet and jovial parents may not be as "sweet and jovial" and much, much more confused after the sun goes down at 6 PM.
What did the ALF say that your parents actually did?
Did you ever hear back from their doctor?
Excellent advice.
When you are dealing with elderly parents you have to be like a detective, you have to get the specifics.
What does throwing a fit mean?
And when a doctor's office doesn't call you back, you call again. You don't sit on your hands waiting for them.
I would suggest you and your sister go the ALF but don't go into your parent's room. You tell the staff you want to hear one of these fits. That you need to be present so you have an idea as to what is going on.
My grandmother had a stroke, and was put in the hospital. She had been living with my aunt. She could sit up in a chair and eat by herself, and talk, and all she wanted to do was go home. This was all she'd say to them. My aunt had been visiting and ask if they could set it up for her to come back to her house. They didn't like it as much, but everything being done there could be done there with a visiting nurse or therapist.
She never really fully recovered, but she got to where she could manage most things fine by herself, and you did NOT try to do them for her either. And she had family all around her. She had a severe stoke some six months later, and was in the hospital until her death, but I don't think she would have lasted under their precautionary rules. At my aunt's house, she could do what she wanted with her days, and loved it when the whole family was there. If it had anything to do with the last stroke, I don't think she would have changed anything.
I can't imagine being trapped in such a place without any option to do as you choose. I've been in the hospital a few times, and once feeling a little better become the worse patient on the block. I ceased cooperation as much as possible, and kept my own hours. I'm a night person, and go to sleep sometime before four am, and wake up later than their usual. The nurse would come into my room, (no roommate) and discover I was awake and watching television. She'd make me turn it off and put my books on the table. She left, I had the light and tv back on and as I was researching with my books. But she'd come back and I'd ignore her and so on. It annoyed me no end that she interrupted my chain of thought and messed up the notes I was taking. But I just wasn't sleepy. It was several hours at least before my chosen normal bedtime (some number with just one of them, like a 2 or 3. I just wasn't sleepy. When they'd bring in breakfast early, when I was fast asleep, they'd keep waking me up and I'd tell them to come back in a couple of hours maybe longer.... Which was right for me. They gave up on it after I was persistant and taking a lot of their time.
Last thing I would want would be in some 'care' facility which doesn't bother to find out what sort of usual schedules their captive have and wonder why so many people resist. My grandmother left the hospital to stay with my aunt and family as soon as she could, with home visits for therapy. She didn't have long but she got to be with family and part of normal life before it was over.
For the OP, if you can't drive them to the restraunt yourself, find someone who can, and not just that. And take them out and away from which sounds like a very unpleasent place. And consider finding another place which does not treat its 'patients' like prisoners which is close enough YOU can rescue them and fight the place for their rights. My grandma regained the use of the arm most effected, and could even do knitting when she died. You think they'd have wasted any time on that if we'd have left her in the hospital?
When people feel like everyone has deserted them and their rights have been taken away, what reason is there to keep fighting, especially if nobody is in your corner.
As someone who just gets more stubborn when someone tries to push, which just insures I won't cooperate, I'd be the one they were soooo glad to send home. And I'd never willingly agree to a place where their rules were absolute, and would resist and be sure to never cooperate with anything.
The idea of stuffing people who are 'ill' because they are older into medical prisons is a terrible one, and taking away the right of choice for yourself is just plain wrong. Nobody should be imprisoned in a hospital just because they needed a little help. There's a lot of better ways of making everyone feeling better.
Take all choice from a person and maybe they just decide there's not reason to go on anymore.
For the op... find some way the parents can go out with their friends and enjoy their life, and not just lay in a bed all day because part of being alive is being in charge of yourself. And tell the people at the facility how you feel. And find someone to drive them over to the restraunt for dinner.
I LOVE this. I could have written it if I could write as well as you. The last time I was in the hospital I went to sleep at my usual time, 3-4:00am. The next morning TWELVE different people came into my room (a private room) to bring food, to take away food, to ask how I was feeling, to check vitals, a social worker and chaplain also came by, a candy striper, on and on. I tried my best to sleep through all these interruptions. Later in the day I spoke with the head nurse and asked if I could put a 'do not disturb' on my door so all these people would leave me alone. She was fine with that. The next morning I slept until 11:00am without ANY interruptions. Wonderful. Now I carry red 'do not disturb' signs in my bad I take to the hospital.
Few things would terrify me more than being locked in a nursing home and never be allowed to go again.
Your grandmother had a stroke, and she also died a few months later. She didn't suffer from increasingly debilitating dementia for years. Dementia is a total game changer.
You are acting as if it's other people who take choices away from people with dementia. It's the DISEASE that takes their options away. And then it's up to other people to try to keep them as safe and comfortable as possible (themselves and others around them) in the midst of a terrible degenerative disease of the brain.
Do you realize that as dementia progresses, the person stricken with it often loses even the ability to swallow? To BREATHE? They often don't recognize where they are, or family members. They are often delusional and have hallucinations. They forget to eat. They forget how to go to the toilet. They forget how to walk. They don't know what time, what day, or month, or even YEAR it is. They will often eat bizarre things, or flush crazy stuff down the toilet. They will often roam at night.
My MIL got up in the middle of the night and got stuck in the bathtub, naked in a tub full of cold water, and her husband didn't hear her crying out for him and found her freezing and shivering the next day. She had sat there for hours.
My mom thinks her stuffed cat is real and tries to feed it all the time. She physically fights taking a bath or washing her hair and left to her own devices soon begins to smell so badly that the smell literally lingers in the car for days afterward.
One of the people who lives in her memory care center eats paper towels. Another one does nothing but cry "HELP HELP" all day. My MIL insisted to us over and over again that she was "raped every day for three hours right there" on the sofa in the main living area. No she wasn't. And when she'd make these accusations, she'd do it very calmly and sometimes with a smile on her face, and sometimes she'd say it was the janitor and sometimes it was Cary Grant. No lie. Please.
My MIL died of Alzheimer's. She went from a woman with three college degrees and a long career in teaching, to laying in a bed unable to move or eat or breathe on her own. This was with the best of medical care. Most dementias are incurable and relentlessly progressive. If you haven't dealt with a loved one with dementia it's hard to imagine just how difficult and sad it is.
What is most common reason patients with Alzheimer's die? Is it 'the old peoples' friend', pneumonia? Or do they just stop breathing?
They weren't forbidden to go out. They want to go out on their own, drive or walk to their friends on their own. Of course they can go out if the friends pick them up. I doubt the doctor decided on his own what level of supervision they needed, it was decided when they underwent their assessments on or before moving in. The doctor is head of the team but not the whole team. Often it is easier when patient's aren't listening however to say "the doctor said you have to". We use that line often when a patient won't come to therapy. MANY old people still consider doctors the ultimate authority and will listen to them more so than a nurse or therapist saying "you have to".
That is fading in our society. Fewer and fewer people think doctors are Gods. I have no problem arguing with them and I'm sure I'm far from the only patient who questions doctors.
With a google search I have answered my own question:
>>>Which complications of Alzheimer’s are most likely to kill you?
Aspiration pneumonia
Bedsores
Sepsis infections from undiagnosed urinary tract infections
Infections in general
Injuries from falls
Malnutrition and dehydration<<<
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