Ready for the dementia ward?

scotland1January 23, 2006

My father is in the middle stages of AlzheimerÂs. Just before Christmas this year, he had his first psychotic episode, and it was a doozy. He drank some dishwashing liquid and ended up spending the night in the hospital. All things liquid were removed from his room at the assisted living facility, and heÂs had no other episodes.

His assisted living place has a room available in their dementia ward, and are giving us first dibs on it. ThereÂs a waiting list. Although the dementia ward is nice and looks like the rest of the place, itÂs a self-contained wing thatÂs in a state of lock-down for obvious reasons. If we move Daddy to the dementia ward, he will no long be able to go for walks or sit outside whenever he wants, and will be separated from the few friends heÂs made. Because that little bit of freedom is what he most enjoys in life, IÂm afraid that heÂll go downhill rapidly if he loses it. Also, he has some real issues about losing his dignity because heÂs not allowed to take care of himself, which would intensify after the move.

My brother and I want our father to be safe and well-cared for, and there is no way to tell if DaddyÂs next psychotic episode will be this afternoon or in six months. We have to decide in the next day or two. IÂm going to talk to a couple members of the staff where Daddy lives to get their opinions. But if you were faced with this situation, what would you do?

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agnespuffin

If he likes to go for walks, then the next thing that's going to happen (and you can almost bet on it) will be that he will get lost and be unable to make his way back. The poor souls that do this seem to get frightened, wander for miles and then they want to hide. So they go to the woods or sheds and won't come out when they are called. The lucky ones are found before something dreadful happens.

You are going to be the one to have to decide what you want to risk. If he is going downhill rapidly, he will reach a point where he doesn't know his new friends and everyday will be a new adventure for him. You just have no way of knowing what is going to happen. It's a hard, hard decision to make. You are most likely going to have to make it sooner or later.

    Bookmark   January 23, 2006 at 3:25PM
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barker_tx

One of my Dad's best friends went for a walk, got lost and froze to death. They didn't find his body for a year. So sorry you have to make a decision like this but it is a toss up between letting him have a better quality of life (though it might be short) and knowing he is safe (but perhaps very unhappy). Everyone of us is having to make similar decisions and 'it ain't easy'. My Dad is not happy that he no longer is allowed to make 'decisions' without checking with one of his children first. Good luck with whatever you decide....Carolyn

    Bookmark   January 23, 2006 at 8:23PM
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ogoopogo

When we were faced in a similiar situation, my MIL's social workers said to me.. " When she is harming herself and/or others THEN it is time to move to the next level."

She didn't think she was but we knew better,we moved her, she balked ever so slightly at 1st then settled right in.

It's a hard call to make, ask the staff @ his home, they can offer a non emotional opinion on his care.

    Bookmark   January 23, 2006 at 10:33PM
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scotland1

I talked with the staff at the assisted living facility, and they said that he was doing really well. HeÂs had no other hints of problems. There will be another room available in the dementia ward in a few weeks, so weÂre going to hold off for now. Daddy has never shown any inclination to wander, and is active and engaged with the main population. When he had the incident before Christmas, we increased his level of care and supervision.

We know that itÂs an unpredictable situation. The only thing we know for sure is that he will eventually head to the dementia ward if he remains physically healthy. The only thing that IÂm confident of is that this is the choice he would make if he were in his right mind.

    Bookmark   January 24, 2006 at 8:22AM
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brena

I know exactly what your going through, for my Mom did the same thing mixing a concoction up..and her dr. said no more living alone..I knew this deep inside..Friends told us she had walked out in front of a truck, she was walking home from church and went the wrong direction to be guided by a friend..and then visiting other friends 6-7 times a day and not remembering shed been there..Then you finally say to yourself, enough is enough and somebody has to do it, it does make them give up their freedom but for safety and well being..I now dont have to worry about her getting lost or hit by a car or just wandering around confused..They have a garden area for her to go out to and she can walk the halls which she does with her new friends she has met there..It is working out real well..Im glad I made this move and you will be too..Keep us posted

    Bookmark   January 25, 2006 at 7:06AM
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lindac

My mil had senile dementia. She one time cut up some of her clothes, so we took the scissors away ( she was in assisted living at the time). Then later she took a wrong turn and walked outside at minus 10 for a short way before someone saw her. They placed an alarm on her ankel that sounded if she went through any of the doors. Then she was very good for 6 or 7 months, and sweet talked the Dr. into taking the alarm off.....and within a week she was gone....about 1/4 of a mile down the street....just trucking along, pushing her walker, but very cold and very tired! There was no dementia unit at that time, but if there had been I would have felt a lot safer! She then had several years of falls. They finally saw to it that she always had a special chair with the back legs sawed off so she could not get out of it without help.
Iowa has laws that prohibit giving calming drugs unless the patient is a danger to others....not only to them selves.
I hope you decide to put your father in the dementia unit very soon, he will find new friends there.....and you can take him to see his old friends when you visit.
Linda C

    Bookmark   January 28, 2006 at 2:37PM
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SadieSadie

I may be too late, but I vote to keep your dad in the assisted living side as long as you can. We moved my mom from the assisted living section to the memory care section last July. . . and she went downhill quickly.

I'm sorry to be so negative, but I wish I could go back and undo our decision. (Actually, it wasn't our decision, because Mom was already declining.) Mom's facility is one of the best in the nation. Still, I really think the people in charge necessarily have different goals than the residents' families. Listen to your gut/heart!!

    Bookmark   February 28, 2006 at 7:41PM
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LFPB4

one thing that you can count on is that he will go downhill. Some go very quickly, some go slowly. There is no way you can say putting him into a NH will make him go down faster. It just depends on what portions of the brain are affected. Now, I am NOT trying to be ugly about this, but sometimes going down fast is a blessing. Some AD patients can last for years as nothing more than a warm body with bed sores.

    Bookmark   February 28, 2006 at 10:40PM
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scotland1

For the moment, we upped his level of care and supervision and havenÂt moved him to the dementia ward. We are at the top of the wait list for a dementia ward slot, and have passed on one opening already. I know that heÂll experience a downturn when he moves to the dementia ward. For the moment, heÂs fine. But he seems to be experiencing a downturn, so we may move him when the next opening comes.

Lfpb4, I donÂt think youÂre being ugly. I donÂt know anyone who would choose a death like AlzheimerÂs. Once he deteriorates to the point that he has no appreciable quality of life, I hope he goes quickly. ItÂs certainly what he would want for himself. ThatÂs the main reason we decided to take the risk and not move him to the nice, safe dementia ward already. The staff at his assisted living facility are OK with this, and seem to think itÂs the right thing to do for now. Part of me wants him in the dementia ward now so that heÂs physically safe, but weÂll probably have him longer mentally if we delay the move. There are no easy answers.

    Bookmark   March 1, 2006 at 10:26AM
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organic_donna

Hi Everyone,
My mother died of Alzheimer's (which I will refer to as AD) on Dec. 26th 2001. I am a flight attendant with American Airlines, so while she was in the emergency room, I was watching the twin towers explode.
We were forced to move her to the AD wing due to her wandering. She was very coherant when we moved her and did not want to stay in the AD wing. The nurses would call me every night and put her on the phone screaming to go home. It was Very stressful. To make a VERY long story short, they told us she would have to go into a Psychiatric ward or she would be kicked out. We had no where else to take her (another long story) so we went along with them.
She entered the hospital walking, speaking, feeding herself etc. When she finally left, two months later, she was in a wheelchair and could not speak.They had given her electroshock therapy and anti-psychotic meds. She developed bedsores because the nurses in the AD wing never moved her. She ultimately died from the bedsores. We had her on a feeding tube and had the painful decision of removing the tube. She died of dehydration. This is a VERY condensed version of what happened. As far as moving someone to a AD wing, check them out before hand. Our facility had no experience with AD patients. They had no idea how to handle the various stages of the illness. Visit the facility several times unannounced. How do the residents look? Do they look content or are they all asleep? Do they have activities or access to fresh air. Do they seem overly medicated.
I have so much to tell you, I could write forever. I am actually on the Kitchen forum, as I am remodeling. I don't have the time that I would like to take to really help. Please ask me specfic questions and I will try and answer you. I am so busy with my project right now, but I feel so much compassion for all of you. I will try my best to help.
I just want you to know that you will make some decisions that you will regret. I am still struggling with a tremendous amount of guilt for some of the decisions that I made. Many times I wished that she would die so that I could have my life back. Now that she is gone I wish to have her back even on her worst day's. I miss her so much. I feel for all of you, take care,
Donna

    Bookmark   April 24, 2006 at 8:01AM
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agnespuffin

Hospitals are not equiped to handle AD patients. They have the needs of other patients to tend to. The only recourse they have is to sedate the troublesome patient or place them in a psychiatic ward. Even the psych wards in the average hospital are not suitable as the staff is trained for the usual psychiatic patient which is nothing like the AD one. When AD is the problem, the patient needs the care that a NH that is used to AD patients if they can't be kept at home.

    Bookmark   April 24, 2006 at 8:36AM
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organic_donna

My mother was NOT in the hospital for a lengthy stay, she was there because the Alzheimer's unit did not hydrate her and she became ill due to being dehydrated. She was living in a specialized Alzheimer's wing of a nursing home. She did not need to be sedated. When she went to the Geri-psych ward, it was at a VERY reputable hospital that only had dementia patients. There was one nurse for every two patients. She developed the bedsores after coming out of the hospital.
I told you this was a very condensed version of my experience.
Donna

    Bookmark   April 24, 2006 at 9:59AM
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scotland1

I havenÂt posted in a while, so hereÂs an update.

I think my dad will be moving to the dementia ward in the next couple of months. HeÂs been declining mentally since his hospital stay at Christmas. His latest development is that heÂs become incontinent and has been hiding his laundry to hide his accidents. Ewww! So heÂs made the move into Depends. That alone certainly isnÂt enough to prompt moving him to the AlzheimerÂs ward, but coupled with his other changes, itÂs probably time to move him. My brotherÂs talked with the staff, and IÂm going to meet with them in a couple of weeks as well. ItÂs not that heÂs suddenly exhibiting new behaviors, just that his good days are markedly less good and his bad days are worse.

    Bookmark   April 24, 2006 at 10:24AM
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agnespuffin

My apologies Donna, I assumed that since you spoke of "the emergency room" that it was an ordinary hospital with the usual facilities. Two months in the life of an AD patient is enough time for all sorts of things to happen. It's so sad that sometimes if one thing is done, it makes something else worse. Dehydration happens because getting enough fluid into them by mouth is almost impossible. Restraining them so they can get fluid by IV seems cruel. Choices have to be made, and often, in looking back, we have to wonder if the right one was made.

    Bookmark   April 24, 2006 at 10:37AM
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organic_donna

agnespuffin,
I was trying to explain ten years in a couple of sentences. My mother had been in and out of the emergency room several times. The dehydration issue should not have happened. She was able to drink on her own, through a straw, but she would not ask for water unless a nurse gave it to her.
The nurses jobs were made easier after she came back from the psych ward and could no longer walk. They didn't have to fight to keep her there anymore. That's how she developed bedsores. They would leave her in a recliner all day and night.
I am getting off of the reason I came on this site. She was not alway's that bad. In the beginning things progressed slowly. I've experienced all of the stages of Alzheimer's disease. If I can help anyone to cope better I will feel that she did not die in vain. I know what you are going through.
The best advice I can give to you is don't expect the person to live in your "world". Their reality is very different from everyone else's. If the person is trying to say something and can't find the word, help them. If they call you mom and you are their daughter, don't correct them, just go along. NEVER say "I already told you that, don't you remember"? Saying that makes them aware that they are not normal. My mother would fixate on something and keep asking about it. I would take it out of the room and problem solved. Remember, they can't help it that they are acting this way. It can be VERY stressful, but try very hard not to lose your patients. When they are gone you will remember all of the times that you did with sadness. I am so sorry for this disease.
Donna

    Bookmark   April 24, 2006 at 3:41PM
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