Hi all, first post here so may end up as a ramble - sorry in advance!
I’m the only carer for my partner who has had MS now for about 25 years (since she was mid 20’s). Initially RR but now moved into 2ndP. The past few years she’s gone from being able to walk with a stick to now not being able to stand at all. This means I have to dress her, transfer her from chair to bed, toilet, wheelchair etc. She has constant spasms, has started to choke when she eats, has a supra-pubic catheter following months of bladder issues.
Thankfully her mind is still as sharp as a pin!
We used to have such an active, fun life but now we’re mostly house bound. Most of our friends live 2 hours plus away, although they will come to help any weekend we ask them. I used to work but had to give this up as I can’t leave her alone at home for more than an hour. Thankfully we have some savings to live on at the moment, although the downside of this is the council have zero interest in helping us.
MS Nurse, physios, local GP, district nurses though are thankfully superb.
What scares us though is where her illness is going. She has gone downhill so fast so quickly. Just 18 months ago I was working away from home and staying away nights, now I’m reluctant to go to the local shops as I’m scared to leave her alone too long. Everything you read online says MS doesn’t kill, yet we are so scared about the drastic drop in health in such a small amount of time that we can’t help but have very dark days.
What should we expect? What can we do? Anything we should be looking out for or be wary of?
Today is a good day for us. Some days are very bad. Thanks for listening.
I think you are asking how will your wife’s MS develop. You will understand that that is something that even the professionals won’t be able to answer, but I do recognise the concerns that you have. As someone with PPMS it’s something that I dwell on occasionally but the worse-case scenarios don’t bear thinking about for too long.
The best advice I can offer is “to hope for the best and plan for the worst”. Excuse me if this seems over simplified. Have you made adaptations to your home, not just for your wife’s current needs but for any increase in disability in the future?
Contact your local authority and ask for the Adult Social Care department. I believe that they have a Statutory Duty to prepare a Care Assessment of your needs.
Have you applied for PIP? It won’t solve every problem but may help living easier.
There are probably more that I haven’t thought of but a Citizens Advice Bureau will be able to help.
Now you’ve found this Forum you’ll begin to realise it is a tremendous font of information, wisdom and empathy. Come here as often as you like, you might even make some friends. I know I have.
Thanks for reply Anthony. Yes, we do hope for the best but try to plan for the worst. Problem with this illness though is guessing what the worst might even be - what we thought bad might look like 3 years ago is different to what we think now, and almost certainly what we’ll think in 6 months time. So awful for those of you who actually suffer. We have made adaptations to the home, but the frustration is money we spent 2 years ago was effectively wasted as we can no longer use those adaptations in the house - had we known how fast the illness would have taken hold we would probably have made more drastic changes initially. But … we live and learn.
I’m so sorry you and your wife are having to deal with this severe progression. MS is such a beast of a disease, we all live with the uncertainty of the future and dread the inevitable progression.
I had my diagnosis changed from RR to SP a few years ago but last year suddenly started relapsing again, so I’m now either Progressive Relapsing or RR. My disability progression is quite severe as I’m virtually unable to walk, have to use ISC to empty my bladder, had a colostomy 2 years ago and generally need help to dress. But I can still transfer and can be left alone, even though there are times when if I go to the loo I can’t re-dress myself so if I’m alone, I end up with my trousers round my knees at best!
How frustrating / bloody irritating that the adaptations haven’t stood the test of time due to the progression.
Have you been in touch with occupational therapy locally? There might be things they could help with to make your house a bit more workable.
thanks for your response and advice. My wife has PIP at full level for both components. She is wheelchair bound all day and can longer transfer between wheelchair and bed/toilet/etc. She can no longer dress herself and I help her shower, brush teeth etc. She’s even lost the ability to turn herself in bed - she needs to wake me up a few times a night to do this as we don’t want her too long in one position in case she gets sores.
We do have a good OT who helps, but the progression of the illness has been so fast these past 2 years that some adaptions we have put in, for example a stair lift, are now (only a year later) impossible for her to use on her own so I lift her on.
The only benefit to all this is it keeps me fit! Some days I feel like a bodybuilder LOL Plus, every time we transfer between chairs etc it gives us a chance to get close for a quick cuddle
Please, please help if you can. Mental deterioration in the last 2 months or more, largely towards me, formerly carer for MS ‘companion’ I’ll call her ‘K’,for over 5 years. My own health has drastically worsened this year, use a stick, see many specialists. There is now a live-in carer who also helps me, but save for gardening I am redundant - this plus a callousness, heartlessness has persuaded K that I must leave, and toute suite. K defends this as matter-of-fact obviousness. I’ve arranged a meeting with LA Housing Adviser but it’s not easy at 71 with multiple health issues. It’s the casual lack of any feeling, compassion which makes me so anxious, low, really so bad, so lonely. K owns the bungalow, I have nowhere to go, no savings now. K often treats me as a stranger and a fool - she mansplains the obvious. She cannot express any feelings about anything, least of all me. It is ‘you’re not needed and should be in Assisted Living, go now’. It’s unbearable,so lacking in kindness, sympathy which she used to be able to access. She is 74 without physical deterioration in 5yrs, MS diagnosis at 26 years. It’s not that the inability to empathise is new but the ruthlessness is. Anyone experienced this? Any help or advice desperately needed. I’m a catholic with an understanding priest who visits, that and prayers help. Alan
Unable to read replies - perhaps whilst being verified? So very grateful to respondents. My nerves are so bad, I often feel I cannot endure life as it deteriorates - I do know that dying by one’s own hand is a grave, mortal sin. I have tablets to help but the effect is superficial. I’ll see a housing adviser today and perhaps s/he can help. Alan
I should have added that K is well known in MS circles and her anonymymity must be preserved at all costs. Also I apologise for the horrible self-pitying tone of my post here. It shames me, rightly. Yet I am at my wits end. K declines all conversation with me, preoccupied as she is all day with her laptop/tablet/phone. None of the quotidian day-to-day familiarity, routine chatting that cohabitees/partners have, is possible.The live-in carer also experiences K’s “cognitive deficit” and callousness but the language barrier is severe and makes mutual support impossible. It is so desparately lonely, life becomes unendurable, worthless save for church. Alan
Hi Alan. So sorry to hear of your situation. As I’ve not been in anything similar I can’t really offer any real advice apart from talk to your doctor and/or social services and get them to help you out in your time of need.
I certainly can’t help religiously I’m afraid either as I’m an atheist, but I guess if this helps to speak to a priest then give it a go. Personally I’m a believer that life is a here and now with nothing once we’ve gone, so I think it’s best to try and enjoy our limited time on this little planet. I do this by looking to surround myself with positive people, and anyone who isn’t helpful, supportive or positive then I’m afraid we don’t have them in our life. Like you, we have enough problems already and so the last thing we need is negativity in our lives!
Don’t know if this helps or not. Hopefully a little bit. Definitely talk to your doctor. Good luck.
I’m sorry to hear of your situation. Am I right in thinking that K has MS, while you do not? And that you were a carer for K until perhaps your own needs became more needful of help and maybe now that she has a live in carer no longer needs you?
One problem that affects many of us with MS is cognitive deficits. This can of course manifest itself in an uncaring, lack of empathy for others. Which is perhaps what has happened with K.
Regardless of what has caused the problem, the fact is that as she owns the property in which you live (I assume you are not married to K), she perhaps has the right to ask you to leave. You could try to seek clarification from the CAB or a solicitor as to whether you have any rights in this, but your situation has probably become untenable so leaving is the only thing you can do.
You’ve said you have a meeting with your Local Authority Housing department, with luck they will be able to help, but often this is a more long term than a short term issue. Do you have any friends or family who can help?
I’m afraid that I can’t help with your religious dilemma, that is a matter you’d need to take up with your priest who might also be of some use in helping you to find a practical solution to the problem of housing.
Meanwhile, your hurt and despair do come through in your post. I sympathise with your situation. It must feel very isolating and lonely to be where you are.
Thank you Sue, things evolved exactly as you describe. But the sense of isolation is terrible - before becoming ill I was a gregarious bloke locally. As well as the mobility problem, I fear being outside - save the in garden - and for all journeys to out-patients or church use Ubers. This gets expensive and most of my pension income goes to K so my savings dwindle.
My experience of the Housing centre was agonising - huge open plan array of cubicles, security men everywhere as howls and screams of fury echoed around, there to be interviewed by man who clearly disbelieved me as he shouted and stared gimlet-eyed. He would not listen and cast aside all the mountain of paperwork I’d been asked to bring. It took 90 minutes or more, given a sheaf of forms, told there would be 3 more interviews etc. told to leave. You are right, Council social housing is only a long-term possibility. Perhaps adult social care will be more understanding - they intend a home assessment within the next 6 weeks.
Thank you for your kind thoughts. I do pray, but I’m bound to wonder about life now. Perhaps it helped unloading my situation here so that I can determine soon the matter of living, such that I am sure.
