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What do you do when...

Posted by ritaotay (My Page) on
Fri, Mar 18, 11 at 12:07

A little background first... May 10, 2007 hubby fell and broke his hip... Since then he has been diagnosed with a bit of heart damage from high cholesterol and high blood pressure, had some strokes causing some dementia, aortic aneurism ( found 18 months ago and big enough for surgery but he refuses to have it fixed ) and the arteries to his kidneys are narrowing... He walks as if he's 100 years old but manages to get up and down the stairs at least a dozen times a day, ( I'm lucky if I can make it 12 times a month )... I have been his only caregiver since the beginning, yet he has 5 brothers and sisters who don't even bother to call.

Anyway, the latest thing is: He talks as if his father is still alive, he died over 30 years ago.

The first time it happened I gently explained things to him, showed him proof and changed the subject... A while later he came into the room with is coat and shoes on saying he was going to check on Pa because he wasn't eating right... I tried explaining once again but he told me I was crazy and said if I didn't want to take him he'd go himself... I got dressed and took him to the old neighborhood to show him the house was gone... He recognized the area, even pointed out the house of a neighbor he used to help then promptly told me I was in the wrong area... I changed the subject and took him to get something to eat... That was it for a couple of months.

It's started up again and becoming a daily thing... I can't be taking him to the old neighborhood every day, explaining it to him is getting harder and harder and ignoring him only works for so long...

It's not as if he has full blown dementia, he's still learning new things and remembers everything they taught him at the rehab facility almost 4 years ago... Most of the time things are ok but lately.....

I suppose I should tell you that if he hadn't broke his hip and got sick we would have gone our separate ways in a couple of months... I tell you that because there are some times it seems as if he's doing things just to get attention... Like when it comes to changing his underwear, some times there isn't a problem, I hand him the clean clothes he changes and that's it... Other times he stands there looking at me as if to say what's going on, what's next, how do I do that... When I get so frustrated I walk away he does everything by himself in a matter of minutes... If I ask him to do something like get a screwdriver or the mail, no problem; if I tell him to hand me sometime he looks as if I'm talking in tongues... I know, I know, ask and tell are different but I always try to do it in a nice way...

I don't think I'll have any qualms about putting him in a nursing home when the time comes, other than the close to $50,000. a year cost ( won't be able to handle more than a year or two at the most ), but what do I do now...

I need some ideas on how to 'divert' his attention, and make it stick,
when he starts talking about Pa...

Rita


Follow-Up Postings:

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RE: What do you do when...

Rita, dementia isn't "full-blown", it's a slow progressive disease, and it has many causes. Check out the thread on dementia. But that's what's going on. He does have dementia, don't fool yourself. Even tho patients have good days and bad days, it's still a progressive loss of functioning.

You need to learn some coping skills, and your local Alzheimer's Association may have info and even workshops.

As for the high cost of the nursing home, you are still a long way from that. Right now, I'd talk to an attorney who specializes in elder-law who can help you arrange your assets/estate to help with your future. Do not delay with this!

More later; I have a busy day today. I hope others chime in, too.

Here is a link that might be useful: A discussion about dementia


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RE: What do you do when...

Second sushipup's recommendation about review of previous thread.

The thing about dementia regardless of the stage is its inconsistency. It comes and goes. The person always looks the same but you're never sure where they're at until you interact in some way. What that means is they can't be trusted. There's no way to tell what they may do next except to watch and see -- which means the caregiver typically must spend increasing amounts of their own time in attendance even if things seem to be going well.

As far as diverting his attention, etc., ......well sometimes it works and sometimes it doesn't. From person-to-person, there's no telling what may work. As often as not nothing works. Which, of course, is what makes the whole situation so frustrating for those new and unaccustomed to the circumstance.

I suggest you keep a close reign on your own schedule and capabilities. Decide what you can manage as opposed to what he seems to require at the moment. In the end, you'll have to run his life because he won't be able to. I encourage you not to kow-tow to every request for a wild goose chase. It won't do him any good and it will make you nuts.


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RE: What do you do when...

Rita, I'm sorry your husband's situation has taken a turn for the worse. I agree with sushipup and asolo. The most frustrating thing about dealing with dementia is its inconsistency. One minute, one day, one hour the person may seem almost "there." Then suddenly they're in another world with limited capabilities.

My mom used to fixate on either her parents or her younger brother. They had all died years before. She'd always ask how they were and talk about going across the street to visit them. I'd just tell her they were fine, change the subject, and similar to what you described, get her a snack to eat. I didn't consider that kind of diversion lying. Nothing good would have been accomplished by trying to constantly remind my mom that her beloved parents & brother were dead. It would have just saddened and confused her.

Be prepared for constant diversion. Develop some strategies: Bring him a snack, turn on a favorite TV show, give him a bright & colorful magazine about a subject that interests him, etc. The fact that he can do some things and gets confused or stubborn about others is all part of the dementia. He may be taking advantage of you, but remember that he's dealing with a mind affected by dementia. This is not a 40 year old, healthy man trying to put one over on you. He doesn't have the ability to formulate well thought out selfish acts. It's more like a kid stubbornly trying to get his parents to do his bidding.

sushipup was right about getting all the legalities in order now. And asolo was right about not killing yourself trying to satisfy every weird request that comes your way. No matter what you do, it will never be enough.

Good luck, and keep us posted. Many of us have had to deal with dementia. You're not alone.

Sue


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RE: What do you do when...

I'll agreee with the other posters. This is going to get worse.

One thing that needs to be mentioned is, don't waste your time trying to explain certain things. In his case, his father. Learn to LIE. Explaining seldom helps and it can cause him to be more confused. The next time he says something about going to see his father, say something like, "oh, this is the day he's going to the store," Or, "His son took him on vacation, he'll be back thursday."

Whatever you can do to prevent confusion, the better it is.


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RE: What do you do when...

Can't quite get over my unreasonable reaction to agnespuffin's viewpoint. Personally, I have issues with deception. However, in context, I've decided to subjugate my personal issues and do whatever works in my long -- and ongoing -- circumstance with mom.

I don't like lying to my mother. On the other hand, I have a situation to manage and I learned long ago that her ability to understand is very limited. I've decided contentment is superior to understanding. I also take some satisfaction in knowing that she won't remember what I said in a few minutes anyway.

Is compassionate management of a loved one in this way more valuable than always speaking the truth? In my situation, I've decided that it is. I know others have different opinions about it. Some of them have worked with me here. I've not seen from them that their constant "reality reorientation" methods bring anything positive to the situation. I live here. And I do/say what I think is most helpful to the situation at the moment it's called for.

Perhaps with people other than mom this wouldn't be a useful thing. Just a few years ago, it wasn't a consideration here either. These days practical management considerations override honesty. I don't think I'll ever be entirely comfortable with it, but there it is.

On we go.


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RE: What do you do when...

Asolo. it is upsetting, isn't it! I also hate, hate, hate to lie, but sometimes it's the lesser of two evils.

You see, when the loved one says something that he believes is true, and you correct him, his first thought is that you don't know what you are talking about. Then, since he KNOWS that his view on the situation is correct, he can begin to wonder just why you insist on lying to him.
He doesn't see the "truth". He sees only what is real in his world.

The memories come and go until finally, they are all gone. Make it easy on everyone by cutting down on confusion.


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RE: What do you do when...

"Make it easy on everyone by cutting down on confusion."

Your single sentence is superior to my four paragraphs.


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RE: What do you do when...

I agree, great sentence. Explaining things usually serves no good purpose. Agnespuffin described it well. The loved one believes his truth. It may be totally wrong, but that's what he believes. For you to try and correct his perceived truth sets you up as the liar in the situation, someone untrustworthy. The ramifications are tremendous. The loved one starts to doubt that you have his best interests at heart and may become even more resistant to your care and oversight.

Do whatever you can to avoid creating that kind of confusion and anxiety. It's the kindest thing to do.


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RE: What do you do when...

Let me give you one example of what I mean.

My aunt(she raised me and should know me well) was suffering from some sort of dementia. It seems to run in my mother's family.

Anyway, she is in a nursing home and seemed happy. She smiled and talked about little things with no problem. Never asked about anyone or anything that would require "memory"

I go to see her one day. We chat, she seems happy and content. Then she says, "who are you?" I told her I was Betsy.

She looks at me and says, "oh no, Betsy is a little girl, about this tall with short straight hair."

Now, I could have tried to bring her into reality, explained that I was grown up, married with three children. But would she have understood, or would it have upset her? If she had been able to accept that she had forgotten all those years, would she be more confused?

So I just said something about how great it was to have the same name as the little girl. It didn't bother her a bit. We continued our little chat, and when I left, I left her smiling.

So, under the circumstances...which would have confused her more....the truth or the lie?

It's this sort of thing that you have to get used to as the dementia gets deeper.


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RE: What do you do when...

I almost ruined my health taking care of my husband who had AZ. I still have lingering problems from taking care of him. The diagnosis hit at the worst time of my life. I was going through major burn out from being married, raising kids and putting everyone in my life before myself. My husband didn't know I was his wife and got mad when I told him. I only told him once, I knew it would not do any good. I tried to redirect his attention to another subject, but that didn't always work.

My lawyer told me to talk to an SRS representative and that is what you need to do. My state lets the woman have the house and one car and half the other assets. If you have less than $19,000. he will go on medicaid right away and you keep your money. If your income is below a certain amount you get to keep that also. They don't take their share of the assets, you just do a spend down to the half you get to keep, then he goes on medicaid. I got to live on the top half and even bought a new car out of it. A lot of people spend all of their savings because they don't know about The Division of Assets.


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RE: What do you do when...

Sometimes, when this sort of thing happens, I find that I can pick up on what is maybe prompting the delusion like someone long passed is in need of assistance (or something similar). Sometimes by saying something like, "It's been a while since you've seen so&so, do you miss him" starts a conversation about the person that lets the demented one express feelings that ( I suspect) prompt the scrambled -up idea that so&so is still alive and needs something. I don't think I can explain it well, it is sort of like distracting him, but you are still staying on the topic of his concern so he is satisfied. Something, a memory or concern or feeling--maybe even about himself-- has gotten short-circuited and come out in this way. Doesn't always work, but does often enough to try, for me.

It does seem the hardest thing for caregivers to get their minds around, that the demented person lives in a different reality, one that absolutely feels true to them, and their brains can't function in a way that can be reasoned with or convinced. You just have to go with the flow, cause really,most of the time, what difference does it make that they are mistaken ?


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RE: What do you do when...

"Therapeutic fibbing" is a diversionary tactic sanctioned by the Alzheimer's Assn. It is difficult for the caregiver to accept sometimes, but with any of the forms of dementia, the caregiver has to pick the battles he/she wants to fight. For example... what's the point in telling a loved one their parents, siblings, spouses, etc. are dead and have them - even if it's just momentary - relive the pain of losing people they love over and over again?

When he talks about seeing "Pa" - explain in plain terms Pa's got appointments and won't be home. Forget lengthy details, details mean nothing. Get out a photo album, have him talk about things and people he remembers. With short term memory, this tactic will probably work over and over until he becomes fixated on something else.

Dementia is cruel - for the caregiver who sees the loved one lose more and more of themselves each day; and for the victim who may or may not know or understand what's happening to them.

I took care of my Mother with Alzheimer's for 7 years and we ran the gamut of ups, downs, plateaus. Each day was a new challenge as short term memory disappeared and all she had left were fragmented and skewed memories of anything before 1940. Some things are hard wired, some things as ephemeral as morning glories. She never lost language, words, how to keep up with her oil painting, her love of classical music, who I and my brother were. But she did lose time; time had absolutely no meaning.

It's a sad journey.


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RE: What do you do when...

Don't think of it as lying, just "fiblets". It often keeps the person with dementia calmer to use "fiblets".


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RE: What do you do when...

I've been dealing with dementia for over 4 years now--yes it is progressive. When it first started I was floored by the forgetting of things--now I'm floored when she remembers something. It does come and go--at first. Hang in there, you will get very good at those 'fiblets'. Good thoughts coming your way.


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