I’m new to this forum so please bear with me and my potentially rambing post! 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 decison?
- 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,
UPDATE TO THE ABOVE
I’m after some advice again!
Things have taken a bit of turn in the last month. Dad was admitted to hospital with ANOTHER chest infection back on 13th February and has not bounced back as well this time. The following have all deteriorated:
- Swallowing - Dad used to be able to feed himself chopped up food - he is currently on a pureed/soft diet in hospital, being fed by nurses slowly to prevent any choking etc and avoid spillages. He is also now having thickener in his drinks and struggling to pick up and hold his beaker at times.
- Speech - This has got worse - I would say I can make out 50-60% of what he says
- Positioning - the OT and nurses say he needs repositioning frequently (much more than the 4 x a day that his carers come to him at home
All of this added to the problems in the original post make me feel that some kind of residential care is our own option to keep him healthy - I know for example without someone encouraging and helping him he will barely eat or drink left to his own devises.
Trouble is that (despite his poor memory and lack of understanding of his condition and how it is affecting him) he is resisiting, when asked by those at the hospital, to consider residential care. I think I could convince him it is the best option by 5 minutes later he weill forget we ever had the conversation.
Is it so bad to want someone to keep as well as possible despite everything that is going against him? Has anyone had a similar experience? How did you deal with it?