Advice please on guilt and how to cope with it

[kay simpson]

Hi everyone

Not been on this website for a while but am struggling at the moment with stress and guilt at not wanting to take even the smallest part of caring for my mother. First of all is this normal?

A bit of background info - my mother was diagnosed with probable AD just over a year ago - she lives on her own (my father died over 30 years ago) and is 78. I have 2 older brothers who are doing an excellent job of sorting care out for our mother, we have at present a lady who comes in the morning to look after mum and keeps her entertained for the morning and makes her lunch (mum is certainly not capable of making her own lunch) she then hands over to another carer in the afternoon who hands over my Mum's friend who stays with her over night. My mother lives in the north west and us kids are all based in the north east so we can't do this day to day care ourselves.

This is a new arrangement as Mum was OK to leave on her own over night until recently when she started getting up and dressed in the middle of the night and rang her friend to ask where she was - at 2am in the morning!! Obviously this became difficult and my brothers arranged night care for her.

Mum had been prescribed Aricept and then taken off it again - there was such a decline that the doctors were persuaded by my brothers to prescribe it again but she will not revert back to the stage she was at before they took her off and that makes me mad too!!!!

Anyway to continue - We and our extended family have been visiting once a month on a rota type basis to look after her and give her main carer a break as obviously (as you all know) it is a very tiring. We now need to cover the extra nights and I am ashamed to say that I don't want to - its not that I don't care - I do - Its just so difficult to see her this way especially as she treats us kids differently, if either of my brothers ask her to do something she will try to do what they want - if I ask - she will tell me that she doesn't want to do it. If my fiance is there she will - Am i making sense here? Basically men are more important than women (yea right!!!) must be her upbringing I guess.

We bring her away for a week usually during school holidays so that Mary gets a weeks break which we did as normal in February - she was only at my house for 2 days but by day 2 at 10am in the morning she had me in tears (which I hid from her - no point in both of us being upset) I had to ask my fiance to take her out for half an hour to give me the chance to calm down (bless him - after one look at my face he took her out for a drive to the shops)

Ever since I have been stressed and tearful - my question is how to deal with this - or should I say how do other people cope especially those of you who are full time carers - actually thinking about all of you is making me feel worse - I apologise if you think I am being a tad selfish but I could use some tips on how to cope with looking after someone who you know and yet don't know?

Conversations don't really happen as Mum can't follow them any more - I think she doesn't understand the words and its all confusing for her so keeping her entertained is a huge challenge - again any suggestions? She seems to like doing jigsaws but I have noticed of late that she doesn't find many pieces to fit anymore. She has her puzzle books which keep her busy for a short time (I know she gets some of the answers from the back of the book but hey does it really matter?
She enjoys Scrabble & Solitaire on the computer at home and at my brothers houses but won't play these at my house for some reason??? I know there are no answers with this and that this is part of the frustration - I like to know "why" unfortunately no-one seems to know the answers - I hate this disease.

Any suggestions on coping and entertaining her will be hugely welcome.

Many thanks

Kay

 

[Kathleen]

Hello Kay

There are no right or wrongs involved in coping with the changes this illness brings.

You are doing the best you can to cope and it seems that guilt goes hand in hand with having a relative or friend with AD, no matter how much or little we are able to do for our loved ones.

If having your Mum to stay is not working, you are bound to feel apprehensive about staying with her. I can only suggest you tell your family how you feel, it can't be good for any of you if the visits cause distress.

Kathleen

 

[rummy]

Kay,
Ditto on everything Kathleen said.
Stress is a big problem for us all. I have had to change my attitude or would probably end up sick myself. It is hard. I also felt guilty for some time. guilt that I wasn't doing enough, guilt that I wasn't making Mom happy, guilt that I had anger and that I actually don't like the person my Mom has turned into.
Somehow though I have stopped feeling guilty. It is probably just part of the process we go through are carers.
First, I recognize that I can only do so much
Second, I am not the rescuer or the entertainment committee
Third, no matter how much or how little I do, it would never be enough so I am going to make it right for me and then I will be a better carer for my Mom.

I hope I don't sound heartless, I'm really not but this is more self preservation than anything else. I was getting so depressed I almost went on medication. And another reason. My folks live down the street from me and I am there every day. My Dad is doing a good job of taking care of Mom but it is wearing him out. He refuses to get any outside help but would rather just depend on me. I have tried to get her into day care, day out, help in....you name it I've tried. He will not do it. He won't do it as long as I run to the rescue every day. So I have started saying"no" can't do this or that today. I can tell it is harder on them but they will never seek other options if I don't. They also won't let me do anything that would really help them anyway like cook or clean.
As for Mom, if I go over, she calls me 5 minutes after I've left and ask me when I'm coming over. Her recall is totally gone. So I give her my time and attention and recognize that it will only have an impact as it is happening. It is like the bottomless glass that you continually try to fill.
The neurologist told us that if he took Mom off Aricept she would drop like a rock and he wouldn't be able to get her back up. Her old neurologist wanted to take her off saying it had done all it could do. I think if she were off of it she would be in a nursing home now.
Sorry this got so long.
Take care and don't be so hard on yourself!
Debbie

 

[Dave W]

In reply

Kay

I don't know that I can help hugely, but I did want to say that yes, your feelings are normal. If they're abnormal, then me and sevreal others share your abnormality

You're going through considerable emotional and domestic upheaval to accommodate a situation you never predicated, wouldn't choose and can't be expected to enjoy: it's only natural that you would feel that you don't want to do it (which is probably why you then feel guilty).

As several others here have tried to - and continue to try to - help me to understand, we can each only do our individual best. There are times I feel spectacularly useless compared to some others here, but I'm me, not them: I'm only human, and I have my limits - I certainly feel like I've been operating beyond them for some time now. Comparing myself to others in different situations and circumstances and relationships won't change my own, and won't make me able to do any more than I already have and do, but it's very hard to make yourself stop feeling helpless.

In the meantime, you can 'vent' here - one of the many things to applaud about TP is that no-one is going to pretend that what any of us are dealing with easy, and everyone appreciates we need support, a shoulder, an ear - an understanding other. Be as kind to yourself as you can - you do deserve it, even if you don't feel like it, and the kinder you can be to yourself the more deserving you may come to feel. I hope so.