Truth or feelings?

[Splat88]

We took MIL to her usual Mental Health appointment yesterday, and I need to know what you think about the way health professionals see AD sufferers.

Mary has been living with us (my husband, her son, one of 2 and the only one that bothers, brother thinks it's all put on but is happy to devolve responsibility) for 3 years, she has been on Aricept for about 4 and a half years. Physically she's fine, but her short term memory is virtually non existent, you all know how it is.

A few months ago her GP halved the anti depressants that the Psycho-Geriaitrician had prescribed, and I don't know if its that or the general run of the disease that's made her more confrontational, restless and unhappy. He has now increased the dose to see if it makes a difference.

She recently accused us of keeping her prisoner, and regularly says we go out all day and leave her on her own, when I may have just been in another room, or upstairs ( she lived in a bungalow so doesn't know about the other half of the house)

Thing is, when the doctor asked how things were, her version was pure fiction ( even down to telling him she cooks for herself, when she stopped doing that even living on her own, months before we moved her to be with us, her malnutrition being a major reason) but when I told the doctor she had been far more restless than usual, she looked at me as if I had crawled out from under a stone!!!

Now I know that he is probably well aware that her version of her health is far from the truth, but in an effort not to upset her, and as is right the conversation is mainly with her, he doesn't really know if she's worse as he no longer does the MMSE. He never asks if we want to speak alone, and it would be difficult as Mary may then think we are up to something, though it wouldn't last long!!!!

We have no Social workers or CPN's attached, but I'd like to know how others cope with this situation. I don't like to bother him too much, and ownder if a CPN would ease some of the niggly queries there are?

 

[Amy]

HIya Splat,
My opinion is 'Get involved whoever you can, though you may not need them now, if they know your MIL now, they will be able to see the changes in her.' Don't worry about bothering the GP - if you need to talk to him as well, make an appointment in your MIL's name, and go along and see him. These people provide a service, which we have paid for through tax and NI - we are the consumer, and have every right to make requests of them. I would say yes, request a CPN.
Love Helen

 

[jenniferpa]

I suppose the point is: even if he knew EXACTLY what her current state was, would he change his treatment? To be honest, I doubt it, and I think that's where we as carers and doctors have a chasm of understanding. From our point of view, it would seem that the more information that the doctor has the better able they would be to treat the sufferer, but I don't think it works that way. I think all they are looking for is responses well outside the norm, with the norm being: this person has dementia and within that, there's a wide range of behaviours. Personally, I feel that they should look at the whole family group and fine-tune their treatment on that basis, but they really only look at the patient in isolation, with the final line being "can we make the person any better". For most cases the answer is no. Furthermore, with the current situation, too much information might force them to change the treatment (e.g. if they did the MMSE and she scored below the cut-off they would almost be forced to withrdraw the meds). It's almost a don't rock the boat approach. It's not right, I don't think, but it is as it is.

Jennifer

 

[Grannie G]

Hi Splatt, I can identify some of your mothers behaviour with that of my husband.

He is always telling me he is a prisoner in this house, but that maybe because he no longer knows what to do to occupy himself and just sits in the chair for most of the day, unless I suggest we do something together.

He knows I am in other rooms in the house, if I`m cooking or cleaning etc. but he now thinks they are my rooms and he is intruding if he joins me.

We too have only lived in this house for 4 years and I don`t think it feels like home to him even now. With hindsight, I now realize he had ALZ before we moved. Had I known, I would have stayed where we were. His whole concept of our home is a confused muddle. He doesn`t understand it`s his house, he keeps asking if we have to pay rent.

As for her visits to the doctor, I imagine she still believes she cooks for herself, as her long term memory, when she did cook, is all she has.

When my husband comes out of one of his `lapses` and I ask if he`s OK, he is surprised at my question and says `Why shouldn`t I be?` Now I`ve realized he has no recollection of any changes in his thoughts or behaviour.

When we have a medical appointment, I always write an update to the doctors, a few days before. When doctors ask how he is he always tells them he`s fine.

 

[Brucie]

Hi Grannie G

We too have only lived in this house for 4 years and I don`t think it feels like home to him even now. With hindsight, I now realize he had ALZ before we moved. Had I known, I would have stayed where we were.

Two aspects to that:

HIS, which is that he would probably have been the same in the old place, or even in a place he had lived in since birth. The fact you moved probably has no effect on him.

YOUR aspect... well, if you moved to help him, then you may regret the move, but if you both moved [at the time] happily and prior to the dementia, then again you have no reason to doubt what you did.

Of course, none of that helps. Jan and I lived in our country place for 8 years before the dementia really started to kick in. We stayed there another 6 years before she moved to the care home. And STILL I think to myself, we shouldn't have moved from the house we left in 1986. Or worse, I think we SHOULD have moved where I now live, though there is no way we would have thought of doing so.

The fact is the country place was best, because she had no place to put herself in danger when she went wandering out while sundowning. It was easier for me to cope there, albeit only by shutting myself in the cage we had created for each other.

You can only do your best in any situation.

 

[Nutty Nan]

Dear Splat,
when our CPN visited this afternoon, we discussed precisely that, with reference to our appointments with the consultant several years ago: the difference in my observations of my husband's state of mind and ability to cope, and his own account of how he was spending his days.
I used to write to the consultant ahead of our appointment, updating him on recent changes, with specific questions and concerns. During the appointment, though, I used to feel embarrassed at how well my husband presented himself, chatting away happily, volunteering all sorts of details which were so far removed from reality that I feared the consultant would think my reports were maliciously exaggerated!
I did not, at that time, take into account the fact that the consultant's experience of Alzheimer patients was such that he would have 'seen through' my husband's valiant efforts at coping.
Why don't you make an appointment with the GP so that you can speak without Mary being present, or perhaps write to him/her with your thoughts?
Introductions to CPNs and Social Services can take a long time when there is not an emergency. It may be a good investment to find out now what sort of help (day care, for example) they may be able to provide, as you may well need more of it as time goes by .....
Good luck and keep us posted!

 

[Jilly88]

Dear Splat.
It's ditto here in everything you say! Not feeling included, even though she's got the run of the house when I'm downstairs to keep an eye on her.... saying she's been left alone when all I've been doing is changing the beds... neglecting her because the Meals on Wheels girl is 5 minutes late, starving her because she'd forgotten that she's eaten already... saying that I've stolen her kettle so she can't make a cup of tea.. ths list goes on and on and ON!... ad infinitum!
Chin up
Love
Jilly

 

[Splat88]

Thanks for all your help, I guess I just need the opinion of someone else to say that it's okay, just keep doing what you are doing.
I know she can't remember that I'm there, but she never used to get upset or annoyed, now we get accused of all sorts of things, and I'm beginning to feel like a performing monkey!
It's getting so that I'm scared to leave the room and get on with things, even cooking! I have to bang the pots and pans really loud, or I've gone out again!
Our GP will only concern himself with her physical state, as she's seen by a consultant at the clinic for the memory loss, but we only see him every three months and I don't know if the CPN would be able to allay my fears more easily.
I imagine that the increased wandering, sleeplessness etc are further stages but it would be good to have confirmation. It's as if she has suddenly become uncomfortable with herself, but doesn't know why.
The suggestion to send a letter before the appointment is a good one, I'll do that.

 

[Grannie G]

Hi Brucie, Thanks for your reply.

We moved to this small seaside town in the South East, from the outskirts of Manchester. We both wanted to move, having visited our son here, a couple of times every year, for 10 years.

It`s a sad coincidence that ALZ reared it`s ugly head, at about the same time. My husband blamed his unhappiness on moving here, and that has stuck. Now he talks continually of saving to `go home`.

In despair, I did agree to put the house on the market and move back, but we sold the house twice, and each time my husband lost his nerve at the thought of the upheaval and trauma of moving, and we had to let people down. That was when I realized my husband was no longer able to make a decision and stick to it, and from then on, it was up to me.

I feel, like you, he is safer here. Local people know us, I have informed shops and the bank of his condition and I know they will watch out for him. He does not wander, but he does get lost if he has, what I call `lapses` and I feel he is less at risk here.

Even so, I still wonder how he would have been, had we stayed in the environment he had known for 50 years.

Sylvia