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

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.

UPDATE TO THE ABOVE

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

Hello G

Your post could of been written by my family a few years ago .My mom had ms but was living at home with my dad who is himself in poor health but 120miles away from me and my sister.

Due to the nature of our jobs and on call rotas we could not be there for long periods of time.moms repeated falls,challenging behaviour and swallowing problems together with repeated hospital admissions with infections were killing my dad despite a great deal of carer input.

As soon as mom lost the ability to talk clearly and swallow properly she appeared to give up which made all care tasks very difficult .my dad took alot of convincing that he couldnt cope anymore and that we needed to decide what to do for the best.We also knew that mom hated her life as she was and despite anti depressants etc she withdrew more and more to a point where we didnt know if she had capacity to decide for herself or not.When someone refuses to commumicate it gets very complicated and difficult.

My sister and I knew she needed full time care and I guess dad did too but as you know that final step is a big leap.While in that limbo time dad phoned me late one night to say he had picked mom up of the floor 3 times in 2 hrs as she kept getting out of bed and that she was on the floor bleeding and he was having a heart attack again…his 4th.

Long story but they both survived and we told dad enough was enough we were telling him she couldnt come home again.I think it was a relief really that we had forced his hand…maybe he had hoped for a while we would so he didnt feel guilty I dont know.

Anyway she did go into care and when dad was recovered his visits then were more like old days rather than the stress of what he had to do next looking after her and running a house etc

Her changing health needs could be addressed immediately as she went into a nursing home…which might be more appropriate in your case aswell.

Your first step will need to be a social work assessment.Does he have an ms nurse as a chat with her would be a good idea.

Sorry if this is rambling and of no help.But if you do want to pm me pls do.There are alot of people here that can give you the practical pointers but I just wanted you to have an idea that I can empathise with you.

Take care Pip

I agree with what Pip has said, a nursing home sounds more appropriate than a residential home. A residential home would not take someone with so many problems. Have a good look at any potential nursing homes, check how many patients there, how many nurses and also if there is any nasty smells around! My father was in a postion where we had to look at nursing homes and some were dreadful where others were better. Make sure he’s not put in a room tucked away from anyone. Unfortunately or luckily depending on one’s point of view my father passed away before a vacancy arose.

You need to be able to have your life, it sounds kinder to me to have him having constant care where you don’t have to worry every minute. Take care.

Janet x

If you are going to look for a nursing home, be very careful,and look for one that will suit your Dads needs,there are some truly awful homes out there,and your dads condition could be affected,he could go downhill very quickly if he doesnt get the right care,do take your time in choosing, you can get a list of the ‘better’ ones from the local health authority that may help,

as Janet said a residentail home wouldnt take him in, it HAS to be a nursing home,you would only get funding for a nursing home,due to his nursing needs,

I had to put my late father into a nursing home due to him having parkinsons and dementia,i couldnt look after him due to my ms,and even if i hadnt had ms, i dont think i could have looked after him,i hope you find the right place ,but please do take your time.

jaki xx

Just wanted to wish you and your dear Dad - all the best for the future - l hope you find a really good place for him where he will get the care and compassion he needs. lt will put your mind at rest and let you live your life the way you deserve.

l know this is what l would want if l ever needed this sort of care. l would never want my daughter to have to spend her life worrying about me.

l do remember your original post - in fact l think l did reply.

But once again - Good Luck.

F.

Where is his and your support network?

His doctor/social worker/MS nurse should all be rallying round you all to sort this out!

You can’t take this responsibility on alone, it doesn’t help anyone if you end up ill as well.

Start the ball rolling and but the issues back in the hands of those paid to sort things out but the previous replies are right, a residential home is not the answer, they won’t take on the responsibility, it has to be a nursing home.

Good luck. Ann

Hello all

Thank you for your comments. We had a meeting at the hospital where Dad has agreed to go into respite care for 6 weeks to see how he goes. All he seems to want is his TV and his own space, but equally he tells everyone he hates putting on me and I don’t deserve a father like him.

This whole thing is tearing me apart - the Ward Sister, OT and Social Worker are all supportive and think this decison is for the best, but my heart is breaking over it all. Part of it is the realisation that we have been going around in circles with Dad’s health for the past year and that his condition realisically is not going to get any worse.

G XX

Sorry, that meant to say it is not going to get any better, not worse (my head is full of fuzz today!)

It is a major life change for all of you but I am sure you will soon see your anxiety levels drop as you dont need to worry all the time if he is in trouble and nobody is with him.

Respite is a good first step to getting used to the idea and will give him more idea of what he likes and doesnt like to help you all choose a permanent place.As a care home manager I know very well how the system works and them that shout the loudest are the ones who get heared so I advise you do research in detail what you want for your dad and certainly recommend doing spot visits unannounced on possible places to see what its really like when they arent expecting visitors…but try to avoid mealtimes or first these are understandably very busy.

If you find a place you do like however,knowing your dad has swallowing issues food choices and manner in which people are assisted with meals when necessary is an important factor.

Sorry but I could go on for ever. I am thinking of you both I if I can help feel free to ask.

Oh yea i forgot…not sure if nursing homes are inspected by CQC but I would expect them to be.Very important to read the CQC report as that gives each home a grading. they are available to read on line.

Pip