Mum's got AD now.

[Pixie]

Hi, Everyone,

Just when I thought we were coping with Dad's AD we have now been told that mum is in the early stages as well. Mum was put on Aricept after visiting the memory clinic. Unfortunately it made her sick and so was told to stop taking the medication (she only took 2). She keeps on ringing up at all hours of the day or night asking "where's your father, I don't know where he is" Although she did manage to walk from the house to the bus stop, get on the correct bus and make it to the assessment centre, via the hospital. If she doesn't know where he is how does she know how to get there. It seems to me as if she has selective memory and is playing on our emotions, she turns on the tears and we all run around like headless chickens trying to make things better. I am sorry to sound so heartless, I am not really but it really is getting us all down. I have offered to have mum here for a few days but all she says is "I wont go anywhere without your father." Although of course that is exactly what she does do everytime she goes out shopping, visits the bank, walks the dog etc. She cannot see that everyone needs a break. She keeps on an on about "how her life has ended now" and "I've nothing to live for". and yet when we try to tell her that Dad is never coming home and will have to stay in residential care for the rest of his life I was accused of being nasty and she then broke down in tears!!! (crocodile or not I do not know. Has anyone any similiar stories to that and if so how did you cope with the situation.

How I hate this awful disease.

 

[Amy]

Hiya Pixie,
Sorry, I have not experienced what you are going through; you must be so worried about your parents. How is your dad doing in the assessment centre? Having been together for so long it must be very difficult for your mum; I suppose whilst she had to cope with dad at home she was in familiar surroundings with familiar routines, so her own symptoms were masked. Now she has been thrown into a new situation, catching buses to the assessment centre, having to leave her husband behind, no wonder she is upset and confused. If she won't come to you could you go and stop with her for a few days, so she feels less isolated?
I'm sure others will have some further suggestions.
Take care.
Amy

 

[Pixie]

Mum's god AD now

Thanks for replying.

Dad is in his second stay at the assessment centre, last time if was for approximately 6 weeks and this time he has been there from Easter. My sister is their carer (direct payments scheme from social services), but mum won't have anyone else in the house looking after her. I have 10 year old daughter so it is not practical for me to go and stay. I tried taking my daughter to the assessment centre but it was all too much for her (it gets to all the family too). Mum cannot see that there is anything wrong with dad. He is quite normal to her even though he thinks he is in a cinema, in a town where he used to live, thought I had been kidnapped and then murdered, thinks mum is his mother etc. etc. Dad refuses to let ayone take over his financial affairs, mum refuses point blank to draw out any money from their jjoint account saying "is is your father's money, not mine." She won't shop properly for herself, buys endless tins of dog food, biscuits and sweets for dad (which he doesn't eat), is letting the housework go, rings my sister and brother at all hours of the night. I got so low and down I was off work for 3 months with depression. It is so good just to get hings off my chest. I do not live close by (50miles away) and so cannot visit as often as I should. It would make it so much easier if only she would come and stay which would at least give my poor sister a break but she cannot see how we are all under considerable strain. Dad is so lucky to have mum visiting everyday. We manage it but it is so taxing. I feel so sorry for the poor people in there who do not have anyone visit from one week to the next. I wish the assessment unit could contact some voluntary organisations to get regular visitors for those who don't have any.

Sorry to go on but it does help to "talk" to people in similar positions, I know from reading the TP that there are many many more people in worse situations so I should be grateful, but how I hate this disease. It takes away the people you love and leaves you with just ones who look like loved ones but that is all that is left.

Thanks, Pixie.

 

[Amy]

Hiya Pixie,

I know from reading the TP that there are many many more people in worse situations

Different, not worse. Yes it may be awful caring for a partner who is abusive and lost, but it is awful when you want to help a parent but can't, because they won't let you, or you live too far away or you have other responsibilities. We are all going through our own private hells, and we all need support.
It sounds as though you and your siblings are going to have to make some tough decisions. Is dad going to go into a NursingHome? Could a place be found where your parents could be together-mum obviously can't cope with your dad, but sounds to be having difficulty herself? You say dad won't let anyone manage his finances, but is he, or your mum capable of making that decision? Your strength at the moment is the way that you and your siblings are working together to support your parents; have you talked about the future, what ideas do you have? Can your sister persuade mum to come to you for a few days - how would your mum manage if they were unable to see her regularly?
Pixie, keep posting, keep talking. Sound out your ideas.
Take care.
Amy

 

[Lynne]

Hi Pixie

It seems to me as if she has selective memory and is playing on our emotions, she turns on the tears and we all run around like headless chickens trying to make things better. I am sorry to sound so heartless, I am not really ...

Of course you are not heartless, you are just at your wit's end trying to put things right which can never be 'right' again. My Mum is also early stage (although without the extra stress of her husband being ill as well) so I know exactly what you mean about the selective memory problems & being manipulative. In her better moments, I have wondered if I am imagining it all, and it's me who's going ga-ga. She can be so normal, especially in company or at the doctor's, that it's not until someone spends 2 or 3 hours with her that they begin to get the picture.

She keeps on an on about "how her life has ended now" and "I've nothing to live for"

Have you asked her doctor if she needs meds. for depression? Even without AD, the circumstances make it very understandable. Come to that, you're probably pretty low yourself. And of course, when you tell her the truth about Dad will have to be in care from now on, you are confirming her worst fears. Perhaps she would be able to come to terms better if the doctor explained it to her. I know my Mum sometimes accepts suggestions from him which have been pooh-pooh'ed for months from me! It's a generation thing - Doctors are infallible (until they aren't!)

PS - just noticed that you live some distance from Mum. Would suggest writing to your Mum's doctor as above, telling him all that you have told us here.

Hugs

 

[LindaD]

Mum and stepdad

When stepdad went into hospital and before we realised quite how bad Mum was, she would ring me all the time to ask where he was and why he wasn't in the house - even in the middle of the night.

When he came out he could only go to the care home as she obviously wasn't able to look after him. We tried to get help specifically for her at home but she wouldn't have it. She would go to the home which was in walking distance, often in the early morning and then backwards and forwards several times a day. We got really worried then as she wasn't eating properly, refused help with shopping, we think she gave away large sums of money to complete strangers and had several falls.

It was only when she broke her arm and they wouldn't let her live alone, she refused to come and stay with me as it was too far from him, that she agreed to go into the home with him. it was then that we had to admit how bad she had really got. Even then though we wondered if we were doing her down as she didn't like being there, and that maybe she could cope with enough support - but we knew that she couldn't really and she wouldn't accept the help anyway. She never admitted there was anything wrong with her.

Even when she was caring for Ray at home she would get very depressed and say she wanted to end it all, but she refused point balnk to let Ray go into respite so that she could have a break, even at the point of him actually going, she denied ever having agreed to it, she only ever admitted that she was aware or worried about her memory on one or two occasions and for most of the time later would say she was only in the home "to look after Ray".

We would get "I want to go home" a lot when we visited but it has been very reassuring since her death to hear from the staff at the home how much they liked her and how well she had settled in! We were obviously the catalyst for the want to go home conversations every time she saw one of us.

Mum and Ray had got so interdependent during their years in the home that I am really concerned for him now that she has died. They had a joint room in a dementia unit, although only she suffered with it, the home have said that they will keep him on that unit as the other residents have got to know him as have the staff and it will help him rather than move him to another part of the home where he would feel even more alone.

I have digressed a bit there but I wanted to let you know that we have experienced the same kind of things.

Love