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

Caring for someone with MS
1

Hello all,

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,

Thanks all.

2

Hi Gem.

I care for my wife who has very similar problems to your dad,the only apparent difference is she is a fighter and very positive.Which makes one heck of a difference to the carer! With regard to the care homes may I suggest a couple of things.One, the Eastbourne branch of the MS Society is one of the best and I’m sure they would have some experience of care in their area.I recently had to find a home for my Mum-in-Law and found her local Adult Care Services extermely helpful and pro-active in finding a place.It must be difficult being torn between looking after a family and a parent .It’s hard enough just looking after one! Just look after your own loved ones and yourself and try not to get too upset about your dad’s situation at least he’s got people looking after him and you can’t ask for or do more than you are.It’s hard when you love and care for someone but sometimes you have to look after number one. Terry .

3

Thanks for the above everyone - I seem to well up every time I read any responses to my post!

Thought I’d give you a very quick update.

Since I last posted Dad has picked up a little - he’s behaving a bit more with his eating and drinking and the carers have not been too concerned about him.

I have spoken to Dad’s doctor and he is happy to support us whatever we decide to do - Social Services have been less helpful, but that is an ongoing battle. Looks like Dad’s care funding has been cut too - not sure to what extent yet but I’ll find out next week.

I am meeting up with members of the local MS Society branch next week, which will be the first time I have spoken face to face with people who have experienced or are experiencing the same as me. I’m sure I will have hundreds of questions!

No doubt I’ll post here again next week with an update x

4

Hello all

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?

G x

5

Hiya in case you dont notice my reply is on everyday living.

Take care.Pip

6

Hi Gem,

I notice that your post was quite a long time ago, and hope that things have improved for you.

My dad and I cared for my mum, who had a very aggressive form of PPMS, and it got to the stage where we were unable to provide everything she needed, the two of us were physically and mentally exhausted, getting angry and frustrated with the situation and with mum’s worsening symptoms. We were feeling more and more guilty about not being able to do enough for her, and equally not wanting to be around her when she had phases where she would say the same words over and over again, or would be constantly wanting our attention but not knowing what she needed or wanted. I held a lot of guilt for a long time over not doing enough for her, or snapping at her when I was exhausted and at the end of my tether, but ultimately know that we did the best for her.

I’ve gone round the houses a bit, but the reason I tell you this is that we made the best, but hardest decision to move her into a nursing home. It was truly heart wrenching to have to do it, but within a very short space of time we knew that it was the right decision. We had spent so long being mum’s carers that we had forgotten how to be her family and had been missing out on so much. By having the day to day care tasks taken out of our hands, and being able to have some of the pressure taken away, we were able to enjoy the precious time spent with her, instead of being her carers first and family second.

This is not a very useful post in terms of advice, I’m afraid, nor particularly upbeat, but hopefully lets you know that there are people in a similar position. Please feel free to message me if you ever need to talk about anything.

C