From bad to worse

[MrsP]

Hi to all
Yet again it has been many months since I last posted, if not longer. Dad (diagnosed 4 years ago aged 51) has been deteriorating rapidly over the last few months. I see him every month (I live a long way away and have a young family) and the changes are heartbreaking. He is now in a residential home, has trouble with continence and feeding himself, can't walk on his own, can't see/ has hallucinations and can't tell what is real and what is not. He can barely talk, and the phrases that do come out are borne of fear and frustration (e.g. I don't want to be here, I want to go back, I want to help you but I can't). He still knows who I am at the moment, but doesn't recognise other family members. I can no longer take my children to see him because (being girls) they scream and squeal a lot and he gets too distressed. Conversation is no longer possible, and the silence is unbearable. He is distressed most of the time and has the most haunted look in his eyes that I can't bring myself to look in them.
I'm so angry at what this disease has done to him, and what it has taken from him, from me and from my family. He has been the most amazing dad and was a wonderful Grandad for a few years but now that's gone. We can no longer take him out for small trips out as he gets anxious if out of the home for more than a few minutes. When he gets home, he says he doesn't want to be there. He's on the maximum dose of medication so I know there's nowhere to go from here.

My husband wants to find some way to make me feel better, but what can anyone do? I'm watching my dad being tortured by this and we've got no idea when it will stop.

I was on a course about cancer a few weeks ago and said to the people there that (although it's also a dreadful disease) symptoms of cancer can (to an extent) be controlled, and you have some idea of prognosis. With dementia you can do very little to help, and this could go on for years yet. I can't think about that.

I'm so sad about it at the moment that my memory and word finding have both gone kaput, leading to the obvious comment from someone at work 'oh no, the Alzheimer's is seting in early!'. The poor bloke got a bit of a mouthful back!

As ever, I don't expect an answer because there's nothing that anyone can say; we all know how hideous it is, and how heartbreaking the changes are.

Thanks for listening anyway, and hope today is a good one for all of you.

Take care, Kate x.

 

[Grannie G]

Hello Kate

I know there are no answers but your really moving post warrants a response.

I know the `haunted` look. I see it in my husband`s eyes when he is disturbed and very frightened. All I can do is hold his hand so he knows he isn`t alone.

And I know the feeling when your father tells you he doesn`t want to be where he is, that he wants to go back.
My husband is on an assessment ward just now and he tells me when I`m there, and the staff when I`m not there, that he doesn`t want to be there, he wants to go home.

But Kate, when he is at home, he still tells me he wants to go home. So `home` can only be where he once felt safe, secure and well, long before the onset of dementia. Perhaps it is the same for your father.

If your father still knows you, I hope he is comforted by your presence.

I`m so sorry you are in such pain.

Take care xx

 

[Amy]

Hiya Kate,

Maybe at the moment there is no wayto make you feel better.....you need to be able to grieve for the dad that you are losing bit by bit....you need to be angry about what has been taken from you and your girls. Life IS unfair.

I think when conversation goes...touch becomes important...will your father allow you to touch him...hold his hand...stroke his head? It must be so hard on you seeing him distressed.

Take care Kate. Talk to us on here when you want.....doesnt matter whether there are gaps of months...
Love Helen

 

[christine_batch]

Dear Kate,
My husband is in E.M.I. Unit and has been for a year. Peter was diagnoised when he was 58.

During the last year I too have seen my husband deteriorate rapidly and he no longer knows me.Instead of a 61 year old he looks like someone in his late 90's.

Being told to expect a phone call at anytime is one of the most horrible things to have on a daily basis.

Alzheimer's has taken so much for our lives.
Peter was a hands on Grandad and he worshipped the children.
We are expecting two Great Grandchildren in October and Peter would have been the first out shopping for baby clothes, first teddy.

When my youngest son got married a month ago, there was a big void in our day. The Bridegroom's father in his speach (no one had seen his speach prior) made a joke about Alzheimer's.

I always remember the Consultant saying in the early days, if Peter had been diagnoised with Cancer - there was treatment.
We are all going down this path together and I wish that there were words to comfort you but all I can say is that on T.P. we understand are are here any time you need to vent any feelings.

Best wishes
Christine

 

[connie]

What can I add, nothing it has all been said.

Amy:Maybe at the moment there is no wayto make you feel better.....you need to be able to grieve for the dad that you are losing bit by bit....you need to be angry about what has been taken from you and your girls. Life IS unfair.

It is not my dad, but wise words anyway.......Many thanks. Connie

 

[jane@hotmail]

I just wanted to say that most ot the TP members will be able to relate to your experience of the disease. I certainly can and I know that feeling of extreme sadness and loss that you're feeling.

All you can do is sit and hold his hand,smile at him. Reassure him. It may be difficult to know how much of it he understands,and it sounds as though my mum is at a similiar stage as your dad, although she doesn't recognize me now, but I'm convinced that although my mum can't understand it's me, she does understand that it's a good thing, she recognizes that it gives her comfort and makes her feel save. It's a difficult thing to explain, but all I can say is that a dad will always get pleasure from his daughters smile and touch.

My thoughts are with you and I hope you find the strength to get through this.

Jane x

 

[TinaT]

I am so very sorry that you, your father and your family are going through the experience of living with this truely dreadful disease. Your feelings are vividly written in your post and many of us here on TP echo them. It is very hard when you are in this situation to hear 'jokes'. or comments which show how little the general public understand about the devastating effects of this illness.

xxTinaT

 

[weezy]

I sympathise like everyone else of how you feel. I have been there, only it was many years ago now. My dad died of AD in his mid 40's when I was a teenager. I don't remember all the details and although we visited him regularly I guess mum sheilded us from the worst being young ourselves. I will always remember the vacantness but did feel he took comfort in his family being there despite lack of communication or ability to show affection or even really acknowledge our presence. I just felt he knew we were there. I used to hold his hand and go for a walk; outside when he was able, then shuffling up and down the ward when he was in later stages. Looking back if he didn't 'know' who we were then he would be less likely to want to go walking and hold my hand? So, if all you feel like doing is sitting next to him, holding his hand and talking to him and what you've been up to, then do it. It will be a comfort to him even if he can't tell you so. You may have to listen to the sound of your own voice, but that's probably something familiar he will like to hear and better than silence. Maybe even read to him? It might be meaningless to him, but again your presence and voice might aleviate his distress.

I have been there listening to people making flippant comments about AD; they have no idea what it really does to families. It's just a joke about loosing your mind to most and it hurts to hear such comments. I never used to say anything, but am getting to the age now where I might!

weezy x

 

[MrsP]

To All

Many thanks for the kind words, and I will certainly be more positive next time I visit. I think we try too hard to fill the silence, and I think it would be nice to just sit. I felt so overwhelmed when I wrote the post, I now look forward to spending whatever time we have left just holding his hand and being there, as some poeple suggested.

Broke down in a flood of tears after a huge arguament with my husband (he didn't want the meal I'd cooked, damn it!!!), realised it was just everthing that was bottled up. Feel better now, for today anyway!

Many thanks again, Kate x.

 

[Kate P]

Hi Kate,

I'm glad you're feeling a little more positive today - despite the meal argument!!

I myself have many irrational moments (not that I'm suggesting you were having one!!) that afterwards I can see were caused by a sressful day or upset over mum.

I understand what you mean by trying to fill the silence - I think as "social animals" it is natural to talk and communicate and feels strange to sit in silence - I used to feel as though I was being rude but as time goes on it bothers me less and I've learned that mum is sometimes happier without the pressure of trying to understand me.

I was wondering if there was any music your dad loved pre illness - could you put that on and sit and listen to it together?

Starngely, I had an exact moment with a colleague today in work who made a comment that he was probably getting AZ because he couldn't remember something - luckily my sense of humour came to the rescue at the horrified looks on everyones faces - I've never seen a bunch of people look so embarrassed on someone else's behalf!!

Take care of yourself

 

[lesmisralbles]

Let's hope the "colleague" was embarrassed
And never does it again.
Barb & Ron XX

 

[Kate P]

Well depressingly he seemed utterly oblivious - I'm sure someone will have filled him in - he does seem to have been avoiding me that last few days!

Anyone else find it astonishing how many people avoid talking to you these days? Hmm, I think that's a whole other thread...

 

[Rosie]

My mam has AD, she was diagnosed at 60 yrs old, she is now 69 yrs, I am a nurse and the collegues I work with know about my mam s illness but still some days I hear " I'm sure I have Alzheimers " when someone forgets something, it cuts like a knife everytime! The caring profession, my workmates ( not all of them I might add). Rosie xx

 

[MrsP]

Music

Hi All

Thinking about music, my Dad used to play the guitar (it sits unused in his room). When my brother and I were tiny he used to play it and sing, and when I was a teenager we would play songs together as I inherited his taste for it! I had been thinking about trying to play something for him when I go, as long as it's quiet as he can't stand loud noise (and my guitar playing isn't that good). Definately won't be singing though, would scare everyone away!!!

I did buy him some of his favourite CD's a couple of years ago, will see if I can find them. The care home tend to play Daniel O'Donnell, my Dad was more of a Genesis fan!

I too work in a hospital, and I always make sure my own team are aware of Dad's illness so that they don't make slip ups about it, but there's always careless throw away comments by other people. I also have to treat people with end-stage dementia which can be upsetting, but it's not my own Dad so I find I can be professional, but have great sympathy for the relatives which makes me give that little bit extra!

I guess if we haden't been touched by this disease we might be making the comments too, as ignorance would be bliss.........

Have a lovely weekend.

Love Kate x