Opinions please

[uselessdaughter]

This is my first post and apologise if you have heard it all before. I am not even in such a bad position of many posters on this site. After four years of my suspecting Dad has Alzheimer’s he has now been formally diagnosed (his condition was previously called ‘Mild Cognitive Impairment’) and whilst his symptoms are not yet nearly as severe as most relatives mentioned on this page I already feel that I cannot take much more. To the outside world I probably seem OK but inside I feel as if there is a great big scream trying to get out of my chest but if I let it out I know I will never stop. I recently went on a once in a life time holiday because it was now or never and I did not feel I could tell my husband we couldn’t go because I was too worried about Dad but I had to check my emails at least five times a day in case there was anything from my brother.

My husband and I moved nearly 250 miles from the rest of our family over 20 years ago (for my husband's job) and absolutely love where we live now. Mum died 10 years ago and although I have worried about Dad every day since (Mum did everything for him), the last five years have been a constant worry. Dad (89) is also very deaf which makes it difficult to communicate with anyone apart from immediate family. My brother lives 10 miles away from him and calls in three times a week. We go to see him for a weekend every month and bring him back to stay with us for two weeks, every other visit. He really should not be on his own so much, but what to do next is the real problem. Last week when my brother called Dad had put the contents of the freezer into the airing cupboard to keep it all cool! He refuses point blank to have a cleaner, gardener or any kind of carer, or to have meal on wheels, which means my brother and I shop for him up, clean and garden every time we visit. He agreed that I could arrange for a befriending service to call once a week but he would not let them in. My brother has four small children (one of whom is autistic) who need ferrying to afterschool activities, and mother in law with cancer who needs help so never gets a minute to himself as it is. He cannot do any more than he already does. My suggestion of moving to a warden controlled unit was met with absolute horror by Dad.

My husband is very anti Dad coming to live with us as they have never seen eye to eye. The problem is they both think I should put their needs first and I am stuck in the middle. Although my husband understands my feelings towards Dad’s care he is not prepared to be, as he puts it, “a prisoner in his own home”. He is planning to take his much anticipated early retirement in September (he has worked full time since he was 15 (is now 60) and quite rightly says there is no point in doing this if he can’t do anything with it. Dad has always expected everything to be dished up on a plate. Until recently we could go out for the evening when he was with us but he would tell us off if he thought we were too late back (I'm 59 for God's sake). However, the last time we left him for about two hours he was very distressed when we returned as he thought we were not coming back. He does seem to cope with us being out at work but not going out in the evening.

We only have a small house (which we love and have worked hard to renovate) and never having had children we both find it difficult having someone else there all the time. I work three hours a day and last time Dad was staying with us I found myself parked in a lay-by for half an hour because I did not want to go home. However, when he is not with us I worry about the phone ringing to say something has happened to him and if I go out I worry that when I get home there is a message to say something is wrong and I was not at home. I then stand outside steeling myself to go in. (I feel sick if there is a message on the phone when I get in).

I know I cannot go on like this - I don't sleep properly and the only time I relax is after several glasses of wine - not good. I love my Dad dearly and know I should look after him but how best to do it is the thing. I know there is no alternative to him coming to us but am afraid it will cost me my marriage of nearly 40 years. I tell my husband he is selfish. However, how can I leave a lost, lonely and probably frightened old man all on his own? Itis not his fault he has Alzheimer’s.

Any suggestions most gratefully received before I stick my head in the oven!! Don't worry we haven't got gas in our village, but you know what I mean.

I am finding I cannot think or talk about anything else but my Dad. I wake up in the morning worried, go to sleep worried, I am consumed by guilt, and now worrying that my husband and myself will not be able to enjoy our "middle-years" before I start to get dementia.

Sorry if this is rambling and disjointed.

 

[Grannie G]

I`m so sorry you`re in this position. It really does seem to be a problem with no solution.

I wouldn`t risk your marriage to bring your dad nearer to you, especially as you found it so difficult when you did have some time with him. If you had to park in a lay by to compose yourself after three days, how would you be after three weeks/months/years?

I can only suggest you and your brother ask for advice from Social Services. Get a care plan in place, for even if your father refuses help now, he may accept it eventually

 

[jenniferpa]

Hi and welcome to Talking Point (TP).

I didn't find your post at all rambling or disjointed - you've accurately described what it's like to love some one who has dementia but also have your own life to lead.

First off: don't even consider bringing your father to live with you, unless you want out of your marriage. I know that sounds impossibly blunt, but this can be a killer even when everyone is pulling together and there is adequate space - a small house and an unwilling spouse sounds like a sure fire recipe for disaster. Frankly - you're husband is doing pretty well having a man who he doesn't get on with to stay on a regular basis. Having said that, though, clearly things can't continue as they are. Your brother sounds like he has more than enough on his plate anyway, without having to support his father this much.

You say you're rather reacted badly to "warden controlled housing". Honestly, while that might work in the short term, it probably wouldn't be suitable in the long term anyway. However, do you know if it was something specific that disturbed him, or was it a general "I don't need help, why should I move" sort of thing?

 

[marchbank]

your story is so sad

i have just read your note and to me you are totally normal. years ago when my mum was first diagnosed i actually went up in the hills with a friend and we did in fact scream our lungs out. as for your husbands reaction. i have been married for 18 years and 13 of those years my mum has had dementia, we have always lived together and sometimes my husband literally looks like he is going round the bend, i am constantly mediating which after a long day can be extremely tiring. i wish you could get to a place in your heart where you feel you can only do your best. it is so normal for a person with dementia to decline services or new people at the start, i found as my mums dementia progressed she became more adaptable the early days are so hard you just wonder how you can get through it. my advice firstly is find some hills - go scream - then stop thinking useless and start thinking human. i at 40 after the 13 years of living with dementia, marriage, kids don't know if looking back i would have taken it on, wouldn't change where i am and what i've done but i tell people to think hard before committing. hope this helps.

 

[sue38]

Hi - I'm sorry I can't call you by your registered name as clearly you're not, but I understand that at the moment this is the way you feel.

Taking on the full time care in your own home of someone with dementia is hard enough, but to do that without the support of your partner is, I would say, downright impossible.

Your father's safety is clearly what is keeping you awake at night. There are things you can do such as disabling gas appliances, having sensors on the doors if he wanders in the night etc.

Other issues might not be so easy. Does you dad resent paying for services such as cleaners and meals on wheels? Have you applied for Attendance Allowance for him? If not could you perhaps talk to him and say that if he was awarded Attendance Allowance he has to spend it on services (he doesn't, but it might be a way of persuading him to accept help).

Does your dad have any empathy for you? Mine didn't, but yours might be different. Could you say that the worry is making you ill, and it would help you if he were to accept help.

 

[Canadian Joanne]

Dear Loving Daughter,
Welcome to TP and no, I won't use the name you chose for yourself. What I'm reading is a woman who is trying to be all things to all people and that, as we know, is impossible.

I am finding I cannot think or talk about anything else but my Dad. I wake up in the morning worried, go to sleep worried, I am consumed by guilt,

This is exactly how I was at the beginning with my mother. It is quite astonishing how all-consuming this disease makes us. Guilt, yes the guilt monster is particularly prevalent at the beginning. Because you are at the beginning of your Alzheimer's journey and all beginnings are hard, but this one is one of the hardest.

If your husband is adamant that your father not live with you, then, in my opinion only, you should respect his wish in this. It sounds like he's being as accommodating as he can for someone he doesn't get on with very well.

I know there is no alternative to him coming to us but am afraid it will cost me my marriage

Discuss this with your brother. There is surely an alternative but your father may not like the alternative. Unfortunately, in Alzheimer's there comes a point when the wishes of our loved ones cannot be granted, simply because otherwise they would be at risk.

One very important point - do you or your brother have Power of Attorney? I also mean the one for personal care (can't remember the name of it in the UK). Those should be settled as quickly as possible.

Please keep posting and let us know what happens. Take care of yourself.

 

[Nebiroth]

I sympthise deeply with your very difficult situation. I have to be honest, though - I think having your Dad move in with you will destroy your marriage. Caring for someone with dementia will put an immense strain on everyone. If your husband is an unwilling party to this it will breed resentment and anger. Your Dad can't help his dementia, but that doesn;t necessarily mean your husband - or you - are endless wells of forgiveness. It's not uncommon for carers to feel prisoners in their own homes, the caring can become a 24-hour-a-day occupation, consuming every moment and leaving no room for anything else.

People with Alzheimer's inevitably get worse. You can't base your beliefs on how you will cope on how he is now. The burden will get heavier and heavier. Sooner or later it won't be possible to leave your Dad alone in the house at all. But it sounds as though you're already struggling - that waiting in a layby because you didn;t want to go home to face what waited you is a sign of how things will be...all the time.

I can understand that you're torn - you obviously feel love towards your dad and want the best for him. But you must also consider yourself and your husband.

There are surely alternatives. Maybe you could sit down with your husband and brother and discuss it all.

It;s not uncommon for peope with dementia to refuse help - because they don;t believe there is anything wrong with them. The bizarre things they do are either forgotten, or regarded as normal.

I openly admit, that there were days when I hated my dad. I resented the fact that neither I nor my mum had any life outside of caring for him, we were prisoners in our home as much as he was. It wasn't safe to leave him. He would not go to day care or respite or accept any help from outside. Everything had to be done his way or we got the shouting and agression. Which we got anyway. Eventually we just couldn't cope, my dad had a sudden decline and was admitted involuntarily to hospital. Both my mmumand I were at absolute breaking point.

 

[hazytron]

Hi

Please please consider all the replies that you have received. My Mum lived 90 miles away until two years ago. At that point she moved to a perfect little house across the road from myself. She was desperately unhappy where she lived before and was delighted with her new home.

About six weeks later she became unsettled, her illness, Dementia, has worsened and although I thought life was hard when I had to travel many miles to visit, nothing could have fully prepared me for what has gone on since.

I have a partner who has been wonderful and I often wonder just why he doesn't up and off because he endures the hell that is Dementia and tries to jolly me along all the time. He has no need to, he could walk away, but he supports me through thick and thin. I wish I had never put our relationship under all the strain that this illness presents. I will never know what would have become of Mum, had she not moved, all that I do know is if I could put back the clock, I would not have moved her here.

Regards Hazel

 

[jenny48]

Hello

I really feel for you at the moment you are trying so hard to "do the right thing" but that is impossible, you cannot do the right thing for everyone. My mum suffers from vascular dementia, but before she was diagnosed we had an annex built onto our house because she could no longer live on her own or climb stairs. It was my husbands idea to build the annex as he said she needed her space and I agreed wholeheartedly with him. Now mum has Vas. Dem. she still stays in the annex most of the time and comes into us for meals and when she feels like a chat but like your dad she is almost toally deaf so talking and getting her to understand anything is a nightmare sometimes.
What I am trying to say is that unless you have the full co-operation of your husband please do not think of moving your dad in with you, I cannot take it sometimes and I really marvel at my hubby who just takes it all in his stride and does as much as he can to help.
I hope you can come to some other arrangements and SS should be able to help you.
Remeber to take care of yourself.

Best wishes

Jenny

 

[Izzy]

Hi there.

I can really empathise with you on this one, although our circumstances are a bit different. I'm the same age as you and my husband was diagnosed with AD 8 years ago (although he is 20 years older than me he is often mistaken as being in his 60s!). Just over 3 years ago my mother came to live with us. She was very mobile then, although beginning to get a bit fragile. She is now 92 and although she does not have AD she does suffer from many of the symptoms. When she has a urine infection she is completely confused - doesn't know where she is, who people are etc. She now needs to be taken out in a wheelchair. Bill retired some time ago and I work full time. Our house is a strange one!! Bill, by the grace of God, has not deteriorated as quickly as many of those descibed in TP and he puts up with a lot with good humour. There are days, however, I feel as if I look after everyone in the world and no-one looks after me. Then I think how well off I am in comparison to many on TP. I think what I'm trying to say in a very round about way is try to look after yourself. I think the suggestion to get advice from SW is a good one. Much as I am happy to have mum living with us I think our lives would be quite different if she didn't. It's a hard one, but at the end of the day I think your marriage is too important to risk. Sorry - not much help!

 

[uselessdaughter]

Thanks

Thank you to all who have replied with so much support. I was half afraid to look to see if I had any replies because I thought many of you would say that as we have no children we should stop being so selfish and be the ones to have Dad with us. After all, so many of you do take it on under much worse circumstances than mine (at the moment).

Just a few specific anwers -

I have spoken to SS but they say they cannot help until he needs help getting out of bed in the morning.

I did mention trying to get POA but was met with "you can have my money when I'm dead", but I know I need to tackle this again.

I think I made my husband sound a bit heartless. He does sympathise very much with the situation and has done many things to help Dad. He will sometimes take Dad out to do something he is interested in when he is staying with us. He just draws the line at having him with us permanently.

Yes, Dad does object to having to pay for any help (which he does not think he needs anyway) although he is not short of money. He refused to pay for a new hearing aid when he lost the last one so I had to pay(I have arranged with the rest of the family that I will take this out of the estate when the time comes). He seems to think he is destitute even though I keep showing him his bank statements!

Bit of a setback on the guilt front last night when my cousin rang to say that she and her husband will be having Dad's brother (92) to live with them permanently as he is now nervous of living on his own.

However, on the positive front there was a message on the ansaphone from the Alzhiemer's Society to say they will try and contact me again to see if they can help with anything. I will try and get back to them later.

I am truly grateful for all your support.

 

[Me2]

Please take care of yourself, OP. I know exactly how you feel as I've been in that state of mind before, for a different reason, but involving family, and it made me ill.
You sound really stressed and if you take the full responsibity for care, it might be that you became too stresed to cope, too. It's not wrong or bad to say you won't care for him in your home. Never feel guilty about that.

 

[zoet]

Dear LOVING daughter, you must always remember this: your father has had a marriage and life with time to bring up his children, share time with his wife and do the things he wanted to do. YOU must be allowed a life too, and having someone with Alzhiemers/dementia live with you is exhausting, all-consuming, restricting, isolating and lonely. Maybe not all of those things for everyone and to different degrees certainly, but you and your husband have worked hard to build a life together and deserve what we all would hope for which is a happy and fullfilling retirement. You should NOT feel guilty about this.

There is plenty you can do, and ARE doing to support your dad and help him through this terrible disease. As he enters each stage new problems will pop up, and what help you get for these will be dependent on where he lives, who is involved, and how he copes with help.
Your local Alzhiemers Society will be able to give you loads of really helpful advice about Social Services, Legal Matters and other support, dont be afraid to ask.
Visiting TP to read or to post will bring you emotional strength and makes the journey your family are embarking on so much less lonely. Tell your brother about TP too.

You will perhaps find your dad is very frightened about his health and this is why he is resistant to help at the moment. Some gentle, persistent and honest talking is needed if you think he is capable of receiving and processing what you say. Your brother and you could do this together. Plan what needs to be discussed and if dad does not want to have help, ask as to how he feels he could be helped. A certain amount of denial would be expected, and a tendency to "fight" the disease, which can be helpful in remaining independent. But eventually facts must be faced, and I suggest you try to establish what your dad wants for when that time comes.
If he refuses to talk to you about it is there someone he would talk to? Such as a solicitor or GP?
Its very hard at first and you too are probably very anxious about the future. But your dear husband has rightly and honestly expressed his wishes, which is very brave, and you must put your marriage first. He will be there for you and you will need him.
Its no good telling you not to feel guilty, because you will! Most of us do at one stage or another. But is a waste of emotional energy so try to just put it to one side. Being strong and happy and able to cope is the absolute best thing you can do for your dad. Zxx

 

[NewKid]

I agree with Zoet (and others). It is hard to say out loud - even on a supportive forum - that your parents have had their lives and equally you deserve yours. But there is truth in this, and there is worry and heartache enough in supporting a parent with AZ without making the ultimate sacrifice of having your Dad (or DIL)live with you and take away your refuge and probably your marriage through this illness. Your husband has indeed been brave and honest - and so have you - in confessing your guilt and your doubts. And our parents would not usually be easy to live with for most (some?!) of us even if they were well! When I am waking at 4.00 in the morning - worrying that the elected CH is not caring for my Mum enough and feeling completely defeated that I could find no alternative to 'banging her up' there 24/7 -I fleetingly think of having Mum here with my family, and exploiting the options offered by day care. For me it's a sleep-deprived delusion that it would ever really work and that I could care for Mum any better than the CH - after all we can't unfortunately turn the clock back and give them back their old life. Very sad, very difficult, and easier to say than do. I hope TP helps you as it has me.

 

[mlovell]

kids and dads

I just know that I would not want my kids to have to move me in with them if I had dementia. I want them to have full lives and I dont think that can happen when caring full time. Maybe it's different if you are married to somone but I know that my dad cared for me when I was a kid and I try to care for him now - but he didn't give up his life, work, marriage, hobbies to do it and I don't think he'd want me to if he was really able to express what he wants.
m

 

[jenniferpa]

My mother used to say to me in her more lucid periods "I do hope you've got another life other than this" (that is caring) so I shouldn't have felt too guilty but it does come on you. I too used to wake up in the middle of the night and try and work out how I could do it (which in my case meant one of us moving countries) but it wasn't possible. I did what I could and mostly, I don't feel guilty. I have made it clear to my children that their only responsibility is to find me a decent nursing home and bring me cadbury's chocolate occasionally.