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What's best for my Dad's health (and my own)?

Hello all,

I'm new to this forum so please bear with me and my potentially rambing post!  I have already posted the below on the Carers board and thought I'd try another angle. I am just after some guidance and support from anyone who has been in the same position as I am in.

My Dad has Progressive MS which was diagnosed over 15 years ago. He is now 59.

Around 6 years ago Dad was hospitalised with a series of urine infections which ultimately lead to quite a large relapse in his condition. He was left unable to use his legs and his left hand and arm. At the time I fought with Social Services as I worried that he would not be able to cope at home. Eventually I gave in and let him come home with a full care package.

He lives on his own in a flat with two carers coming in four times a day to look after all personal care, provide him with food, drinks and all laundry and he is hoisted in and out of bed and spends the day sat in a reclining chair in his living room. He is also incontinent. The carers are brilliant but this year has been a bit of a nightmare with Dad's health. He has been in and out of hospital about eight times in total this year with mini strokes, chest infections and fits brought on by infection. In December alone he was in hospital twice, once with a nasty chest infection and then a week after he was discharged he was diagnosed with having had another MS relapse.

He is now back at home but myself and the carers feel this last relapse has changed him. His speech has got a bit worse but he seems to have lost his spark. He has never been someone with much of a flair for life, even before his diagnosis and has been a difficult man to understand and our relationship has never been that close, but he just doesn't seem to be interested or want to listen anymore. He has had me in tears recently over his unwillingness to eat or drink or accept help to get better (or at least as well as he can be).

All of the above has started to take its toll on me. I have had anxiety attacks when I know I have to go and see him and am struggling to find the energy to keep him alive (this is ultimately what it feels like and he says quite spitefully that he would rather curl up and die). I feel anxious at the various times of the day that I know the carers are due in and sit waiting for my phone to ring with news that he has had a turn. Because of this I have lost my appetite and find myself getting tired and emotional. I have been married for 2 1/2 years and my husband is fabulous but I also worry about the pressure everything puts on our relationship and my ability to lead my own life. I also work full time, which means that I don't have a lot of spare time on my hands.

The main reason for this post is to get some advice. I no longer think it is good for him to be living alone like this, mainly because of all the additional medical problems that he is now facing, along with the fact that I don't feel like I am able to look after him as well as he needs. My husband and I are now wondering if he would be better looked after in a home with nursing staff on hand.

Has anyone else been in the same position as me? If so, what did you do for the best and how did you go about it?

  • Who should I be making contact with?
  • Where can I go for help regarding homes and making that difficult decision?
  • Does anyone know of anywhere in the Sussex/Surrey area that specialises in looking after people with MS, or any other homes that come recommended.

I just don't feel able to keep him 'healthy' anymore and want to make sure I do the right thing, even if it means making that very tough decision,

Thanks all.

 

I'm afraid I can't offer any advice about who to call etc (Social Services perhaps?), but I wanted to say that I think you're doing the right thing. I would never want my MS to stop my daughter from having a happy, fulfilled life. You've done a wonderful job fighting for and looking after your dad. It's time you looked after yourself too. Be happy.

Karen x

 

 

l agree, wholeheartedly, with Karen. And l can also understand why your dear dad feels he wants to curl up and die. lt does sound as if he would be better off in a specialised nursing home. ls there any chance he could go into one for a temporary stay/respite see how he gets on and they can assess how they could help him.  He sounds very depressed - which is l am afraid one of the symptoms we do suffer from. Perhaps he needs VitB 12 injections

Get on to his GP/ Social services/ don't be fobbed off. There is help to manage his incontinence - and this is probably the main cause of him feeling so low. lt is very degrading and depressing when you lose control of any part of your body - and as he is your Dad - you are the last person he wants to see him like that. 

Coming on to this site will give you a better insight of the problems of this disease and hopefully someone will come up with the right info for you to help your dad.  But please do not let it take over your life - l am sure he would not want that.

Lets hope the New Year brings a brighter future for you, your husband and your Dad.

F.

Thank you both. My husband and I are getting a plan of action together but I'm struggling to find the strength myself at the moment. The spontaneous tears aren't helping things!