hello, new to forum

[annj]

Hello everybody,

My dad has been suffering from Alzheimers for 14 years, he is now 65 and in a care home. My mum cared for him until february this year, when if became impossible to look after him at home. He had to be taken to the respite care centre (he had been going there once a week for years) until a place became available in a home. When he was there he became very distressed then very ill with a chest infection, then 3 months in hospital, on a general ward, so distressing as other patients and families did not understand his illness. Anyway it was touch and go for a while, but he managed to beat the infection. The doctor who treated him in hospital told my mother, sister and I that he didnt think my dad should recieve antibiotics as it would be better if he passed on as hos life was not worth living. we were in such a state. it seems surreal really that a dodcor can ask us whether we want to give treatment or not. He was transfered to another hospital, a small community hospital, where he was under the care of out GP. He told us that he was going to give my dad all the chances by aggressivly treating the infection (such a difference from the other doctor). My dad got better and has now been moved to a nursing home near my mothers village in snowdonia. he seems to have settled, but is unable to do anything exept lie in bed and eat liquified food. He is getting stronger,but is now starting to become more distressed, crying and shouting etc. I cannot stand to see him like that, it breaks my heart and it has got to the point now that I dont want to visit, because I know I will hurt so much. I feel so selfish, I have been there for him and my mum for years and moved back to my home village after university in order to help with the care, but now I feel that I cant take anymore. I hate this illness so much for what it has done to my dad and out family, bit I feel that I have no more energy left. Sorry to vent but feeling upest today. Annj

 

[jc141265]

You are amazing

Annj,

You are amazing! 14 years, I can't imagine it, 5 years has been hell on earth! Your poor Dad too and your Mum and anyone else affected.

On the doctor who had that horrible attitude, I'm so sorry. People don't realise that your Dad is still there, they can't see him like you can. Some think its kinder to just let them go and I know sometimes I do wonder, but my Dad recently went through a really bad infection too(he's 60) and you know what, I could see the determination on his face, the stubborn old fella was determined to beat it, so I've decided to live with the fact that he's not ready to go yet, and will support that. If he does decide one day that he's had enough then I guess I'll have to support that too (passively). I know when my Grandad died, he had battled with his illness for years and then one day he said he'd had enough, three days later he passed away, so I have a certain belief that technology alone can't always keep us alive if we don't want to be, though there are exceptions and i know I may be faced with that in the future.

I know I was thrilled to pieces when Dad's doctor announced with a wonderful grin that Dad had managed to beat the infection, he looked so pleased for Dad, I was surprised he cared enough to help Dad hold on. There's a man who takes his oath seriously. But I'm treading here on dangerous ground, it really is a personal issue whether one believes in not keeping folks alive. I don't think the doctor should have put his own beliefs on you though, he should leave it to you and your family. Good to hear the other doctor was better.

As for not visiting your Dad, 14 years girl, don't be so hard on yourself, your Dad would understand (even if he's current state of mind doesn't allow him to). Have a break, maybe you will find you can visit again at some point, maybe you won't. Your Dad would understand.

Anytime you need an e-hug, just send me a message.

 

[daughter]

Hi Ann and welcome to TP.

I can understand your not being able to stand seeing your Dad that way. 14 years is a long time to have been watching and supporting your parents. 'Selfish' is certainly not a word that springs to mind. I feel such a novice.

I have a sister too and can vividly visual the scene where the doctor said to you all, 'it would be better if he passed on'. I can visual it and feel nothing but horror.

No matter what people say about the importance of visiting, I know that when my Dad reaches the latter stages, I will be forcing myself to go to see him. He's still physically quite well at the moment, but I'm really not sure I will be able to handle the next stage.

I'm sorry I have no encouraging words but others here are going through the same things. I just wanted you to know that I was thinking of you,

 

[annj]

thanks

thanks for your kind words, it felt really good to be able to 'vent' a little and get some things of my chest as such. yes 14 years is a long, long time but my mum was adiment that my dad would have the best quality of life for as long as possible. The later stages of this horrific illness is bad, but some times through the confusion, anger and blank looks, my dad will say something that we can understand, so i know that he is still in there. I find myself feeling very angry and what has happened and sometimes so depressed, but then I try to remmember how my dad was and how he would not want us to be upset, but its soooo hard.
I got married in december 2004 and my dad managed with some help to walk me down the isle. this I will never forget, he was singing along with the harp music and he had a good day that day. He went down hill at the end of december, it was like he was waiting for the wedding before he let go. My dad gets the best of care at the nursing home and the staff are fantastic with my mother also, who spends most days there. She still finds it difficult to let go of the practical care, eg feeding my dad etc, but I know that she goes home to my sister (lives at home) and sleeps all night for the first time in many years.

 

[1234]

hi I am new to all this, but you and your family seem to be so strong and handling this horrible illness much better than i can ever imagine my self doing, just hope your good example, rubs off on me Pam

 

[blue sea]

Annj

you've done an absolute brilliant job over the years. Don't be hard on yourself. Do what you can when you feel able to. if you can't visit for a while you can help in other ways - perhaps taking your mum her out of worries for a while with a shopping trip, theatre visit or whatever she might enjoy. I do believe that when things get more difficult we do find the strength to cope. I find it better to take each day as it comes and not think too far ahead. Your account is an inspiration to those of us who have lived with this illness for a much shorter time.