Family matters

[aileen]

Fiz, try to encourage your mother to accept help before she reaches crisis point. I'm a little puzzled as to why your parents' house is being put on the market for sale. I thought that if Social Services contributed towards the costs of care and the client owned a property, but the client and/or another elderly family member was living in the the property, a charge was taken over the property (ie the property did not have to be sold). Don't forget that certain benefits are available: Council Tax rebate; Attendance Allowance and possibly some sort of carers benefit for your mother. Even if your parents are not eligible for these benefits immediately they may be eligible in a few weeks or months time. I suggest that you visit a CAB or ask for advice from an organisation such as The Alzheimers Society. Alternatively, there is a lot of information online.

[Fiz]

It isn' t for sale. Aileen. Our house is being put on the market shortly.

[aileen]

Oh, sorry. I misunderstood. I hadn't appreciated that it was your own house which was going to be put on the market.

[alison]

Fiz, try to encourage your mother to accept help before she reaches crisis point.

 

Indeed.  Parents can be unbelievably stubborn about this sort of thing, and may take a lot of working on before they accept help.  There ought to be some sort of local carers' association too which can give you advice - and I know that the Co-Op's selected charity this year is one which supports carers, but I can't remember which.

[Fiz]

They have been told what help is available and it is a lot. At the moment, my mother and brother feel they can manage. However, my brother realises that this will not be the case forever and I know he can persuade my mother to ask for help when it is needed. What I am concerned about is that neither of them know just how awful Alzheimers can become. We aren't at that stage yet and I pray we never will be.

[Aruna S]

I just read this whole thread. I lost my own parents a while back, my father quite suddenly many years ago and my mother after a long period of ill-health and mental disorientation which was never actually diagnosed but involved a lot of very hurtful behaviour. After many years of being the sole support for my parents I was devastated to be attacked and pushed away. I can completely relate to the friction with siblings which such situations create, I don't think our relationship will ever recover from that. It made me very glad that my son is an only child! 

Fiz, it's wonderful that your brother is being so helpful. I will remember your family in my prayers.

[Fiz]

Thank you, afds. Yes, I think I am very lucky. I do feel a bit guilty but I also miss our daughters. Mum thinks we should move for them.

[aileen]

Fiz, I think that it's best not to think too far ahead. Your mother and brother will adapt to your father's changing health. Whilst your father's dementia is not too advanced I would try to have some enjoyable days out, holidays etc if you feel that you can manage them. I did this with my mother (eg I took her to Belfast, where she grew up, to carol concerts, to the ballet). A week before Christmas last year we had what turned out to be our last big outing, which was to The Coliseum to see the Nutcracker. It was tremendously stressful for me, not least because there were problems with the trains (my mother lives 30 miles from London) on the day, but my mother sat transfixed throughout the performance and even told my husband something about it when he drove her home (she was car-sick on the way) afterwards. I'm glad that I made the effort because three months later my mother moved into a care home following a fall and it's clear that an outing of this kind is now completely out of the question. I'm now fretting about what to do about Christmas.

 

It's unbearably sad for me to see how diminished my mother is, both physically and mentally. My mother was very clever as a schoolgirl and, very unusually for a woman of her generation (she was born in 1930) went to university and obtained a chemistry degree. I was thinking about this when I last visited her and tried to get her to do a child's jigsaw (a picture of three Disney princesses!). She couldn't get anywhere with it and we had to abandon it after a few minutes. The only thing that comforts me is that she is not suffering: she's not unhappy; she's not in pain and her needs are being met (at an earlier stage of the disease she was much more anxious and unhappy). I also keep reminding myself that she had over 75 years of good health, which is much more than many people have.

 

For me, the thing which has upset me the most about my mother's dementia is the arguments and tensions between my siblings and me which have arisen out of decisions about my mother's care and the management of her assets. More fundamentally, people react very differently to a person's dementia. Friends of long standing often fade away surprisingly quickly and family members do not always rally round. I have been very hurt and disappointed by some people's distance including that of a close family member. Like afds, I don't think that my relationship with my siblings will ever be the same again.

[taxi4ballet]

Fiz, it may be worth asking at your local library or health centre to see are if there are any carer's self-help groups locally.

 

There's one near us (run by a neighbour of mine who has been caring for his wife for many years). They get together once a month or so and are able to talk to others in the same boat and support  one another.

 

Perhaps there's a similar scheme near to you. 

[Fiz]

I do appreciate all your help but the problem is my mother. She has never been the joining or talking type. She has not even told her step sister, to whom she is close, about my father's diagnosis. I will tell her but I know she will ignore what I say

[aileen]

If you've always been a private person and / or a non-joiner then I imagine that it can be difficult to join something like a carers group where you sit around talking about how you feel. I too felt rather reluctant to tell other people about my mother's diagnosis. I don't know why. Perhaps it was because eveyone else's parents were younger and seemed to be in good health and I felt rather jealous of them and thought that they probably wouldn't understand what it was like having a parent with dementia. Perhaps it was because I felt that I would be judged negatively for the decisions which I was making about my mother, in particular the decision to move her to a care home. People can say such thoughtless things, for example: "I would prefer to be dead rather than go into a care home" or "I could never put my mother in a home." The reality, of course, is that some people eventually need 24 hour care and become very difficult to live with, that families today are increasingly small and geographically scattered, that many women (and it's usually the daughters who do the caring) work and / or are looking after school age children when their parents need care, that many people's homes are unsuitable for a frail and demented relative and that older family members and friends often have health problems of their own and / or other family commitments. In my experience, most familiies, even large and close-knit ones, end up moving their relative to a care home once the dementia becomes very advanced as they find that they can no longer cope any more with the strain of caring for their relative.

[taxi4ballet]

Perhaps, for a certain generation, there are things which are somehow considered a 'taboo' subject, and they feel unable to talk about them, even to close family member and friends.

 

It was several years after my mother's death that I discovered that I had three uncles and not just one - her two younger brothers had died in early childhood. She had never spoken about them, ever.

 

I only found out because I decided to research my family tree, and contacted someone who was conducting a study into that surname.

[alison]

I'm not sure to what extent it's taboo, and to what extent it's more an attitude of "It's happened: we have to keep moving forward", rather than sitting moping about the past.  I mean, my mother lost her first child shortly after birth: we never talked about him, but I don't think it was because it was a sensitive subject or anything.  My parents just didn't "do" "the past".  (A shame, in a way, since they both died relatively young, and now we have no way of checking up on family history)

[LinMM]

Ive written on this thread before about my father but was very touched by your comment Aileen about your mother and trying to do the jigsaw.

 

When my father was getting quite bad in few months before he died there was an England football game on the tv as part of the 2006 World Cup He used to play football and was a keen fan but was unable to really properly follow this match and when he said "well it's only a game of footbal" I knew he was in deep trouble as he would never have been so disinterested in such an important game in the past.

 

I agree about the inevitability of people having to go into a home in the end it's just too much to,look after someone in the advanced stages.....my dad kept leaving the gas on.... And did not know what time of day etc it was.

I was saved from this decision even though had begun looking in the Brighton area because he died suddenly fom a heart attack....luckily while I as there.....and although you don't want your parents to die it was a relief too as I was dreading the decision to put him in a home but knew it had to be. It is truly horrible seeing the decline of people you love.