So, I was wondering if anyone has any words of wisdom, as I am at the end of my tether. I am mostly a carer for my wife now, she has had MS now for 18 years (she is 55). She is obviously very depressed, in fact both because of the MS, and other horrible and life-limiting conditions, that ended with her on intensive care. But I find it very difficult to tell where the depression ends, and some MS cognitive problems begin - as others on this forum have noticed with their spouses, over the past decade or so she has become quite un-inhibited with her emotions and rage, lashing out constantly at me and others. And she no longer seems to have any problem-solving ability for even day-to-day tasks. She prefers to just yell “this should work”, rather than try any alternate approach. She used to be smart, 0.01% smart, and super-motivated and competitive.
So, my question for now, among so many others, is that relatively recently, last 9 months, she’s just giving up on the world. Earliest she gets out of bed is midday, but often not until 5pm, and even then doesn’t get dressed. Refuses to go to bed maybe 2am earliest. She has fallen out with her family completely - for good reason they have behaved terribly, but the way she handles it is so unproductive - for up to several hours a day, 7 days a week for months now, she is engaged in an messaging flame war with her brother. We see friends maybe once a month at best, she leaves the house at most once a week (with me), and it’s starting to become a battleground topic that she should even get out that often. We don’t have children. I work from home, had to downshift career because there wasn’t an alternative really. I now do all household tasks, including dressing her. I am becoming extremely isolated too.
Physically, I’m afraid she is indeed in a transition period from being able to walk with a stick, for maybe half a mile or so; to where this is going, it’s obvious she is now SPMS which is she will be bed-bound. If this isn’t the last year of any “outside life”, then maybe there is another year at most. So I want to make it, so that at least her head doesn’t cost her (and us) that last year. She has literally nothing in her life, all activities have been cast aside.
She is on anti-depressants, but I can’t get her to see the GP to review them, because she’s fallen out with the GP. She used to do CBT, which she found very helpful for couple years, and I was very supportive of. But she stopped a year back, and whenever I bring it up she accuses me of telling her she should just “suck it up”, and that if I had her life I would realise that it was real not all in her head.
I just don’t know what to do. I know she needs to seek help, but I can’t force her and apparently can’t influence her. At some point, I suppose I need to contact medical and social assistance against her will, and I don’t know under what circumstances I am legally allowed to, and I know she would view that as the ultimate act of betrayal. Similarly, if I told any of our friends what was really going on at home.
If anyone has navigated this bit of the journey, I would really like any advice. It’s a living hell, and anything that could make it even remotely bearable.
YOU are both living in hell sadly. She has lost her way, feeling sorry for herself and acting out.
You need to ring Adult social services and ask for help and advise. they can come and do an assessment on her. Also talk to MS Society have you thought of finding her a RESPITE CARE holiday so that she can just get away from you as well, your together too much.
So find the telephone number and ring them and ask for help. Where is her neurolgoist when was she seen last. she isnt that bad to be honest if she can walk half a mile not bad at all. jeez i can just make it to my toilet and i live in a tiny bungalow. I am primary progressive and now going into a wheelchair and having a hospital bed.
ITS VILE THIS DISEASE, it just robs you of everything and sometimes you just act out you dont even know why. It can even be down to the pain. you say she had another life changing event so could it be that also.
anyway ring the adult social services team, get help talk to GP, get an appointment with her neurolgoist or MS nurse. SHE needs an assessment not only physically but mentally too.
i lost my care worker my beloved husband who passed away in 2017 suddenly, and some days quite frankly if i had the courage i would end it, as i cant see the point of it any more, but then my little bella walked into my life she is 17 a little rescue shiz tzu who keeps me going. Have you thought of something like that for her, to give her an interest?
anyway start the ball rolling, get a CARE PACKAGE IN PLACE you dont have to do all this on your own, and IF SHE CANT GO INTO RESPITE CARE, you can get someone to be with her for a week and YOU GO ON HOLIDAY.
xxxxx
me with my little bella i am 73 now and just live in pain all the time.
oh on another note you should tell her to stop behaving so badly to you as your doing your best and maybe put your foot down a bit.
CC.
Hi there and so sorry to hear about your clearly very hard times.
I’m the one with MS in this marriage so I can’t give a carer’s perspective but here are some random thoughts.
Perhaps most importantly and if you can, find a way of stopping the ongoing ‘flame’ war. Such things can be both addictive and a terrible spiral down - a vicious spiral. It will also feed any feelings of persecution etc and in particular it’s just going to inflame her symptoms and make them worse. Is there any way that you could tell her brother to cease?
I can just about walk 1/2 mile but I’m not expecting to be bed bound anytime soon. I think it’s a slow decline for me and, Perhaps in 5 years or more I might be in a wheelchair but I’m not certainly not thinking that my current walking difficulties are any indication of imminent confinement in bed or armchair.
Is there any way you can get her to spend some time sitting quietly and peacefully out in the garden or park? Or anyway to give her emotions and mind a rest from brooding and plotting here next reply in the flame war?
Really?
It sounds to me as though you have bent over backwards to help someone whom you love but who has drifted far from you and has become very hard to help. You seem to be seeking suggestions for ingenious ways in which you can do more of the same, only more effectively.
The trouble is that doing the same thing over and over again (albeit even more and even more ingeniously) while expecting a different result rarely ends the way we want it to. And that brings me to the text of yours that I quoted. I think you need to change your perspective a little bit and start thinking more about you.
Why does your career have to take a back seat? Just because there’s work to do caring for your wife doesn’t mean you necessarily need to do it yourself. IN your shoes, if throwing myself into my job whole-heatedly again meant that I could afford to buy some care in, that’s what I would want to do. Misery loves company, so it is quite possible thqt your wife would resist your attempts to escape from the misery vortex, but then again, she might surprise you. I just think you’ve reached the end of the road trying to please her first and foremost. People get awfully stuck in cycles of misery. You cannot jolly your wife out of hers - that’s her job and you know that - you’ve tried hard enough. But I do think you need to face up to the fact that you are being dragged down inexorably and that this is not OK. Good husbands are an absolute blessing - I have one too - but they deserve a life too, and having a life doesn’t stop them being good husbands. I hope that I haven’t spoken too out of place here and apologies for all that I have failed to understand about your very difficult situation.
i agree hence i told him to contact adult social care for an assessment and get care in and if he can organise a respite for his wife and himself, and if she agreed for him to go on holday.
i think she is so wrapped up in her own misery she isnt seeing how badly it is affecting him, and he is doing way too much to appease her which i think is the wrong thing to do. She needs to snap out of her pity party and remind herself how lucky she is to have a husband who can care for her. I lost mine to death, 4 days after going to the IOW to look at a bungalow we were thinking of buying as we wanted to retire there. I wish she could read this. I lost the love of my life, who cared about me, and now i am living in hell everyday. @TryingSoHard, SHOW these posts. Hun you need to put your foot down, get care in and have a life too even it means going to work. if you cant get care as you have too much money there are loads of people out there who are looking for care work.
ask adult social care about DIRECT PAYMENTS. but only YOU can sort this lot out. you deserve a life, i dont have my hubby anymore she is so lucky. It kind of makes me cross with her. x
Just thinking a bit more - definitely find a way of ending the ‘flame’ war. One of the worst things for MS is stress, anger and basically anything that fires up , over activates the Immune system and ‘fight or flight’ response. I fear that if she isn’t careful she is going work herself up into a state of mental and physical aggravation which, will aggravate existing MS symptoms, make them worse and possibly bring on a relapse and a whole range of new symptoms .
Agree with the others- please do look after yourself and find support. Also Find a way of being strong and ignoring her accusations of betrayal etc. Accusations that are obviously nonsense.
All the best and hoping that a cessation of flame wars will calm things down a bit
Thank you for your thoughts. I think you are right that I need to try and intervene with her brother. He’s difficult, because one of the causes of the flame war is that he is high-functioning autistic (just calling it what it is); he has no concept of what she and others are feeling and the impact of his actions, just has constant demands based on his own anxieties. But that’s probably the one point I can intervene and try to stop, and might give her space on her mental state.
It’s been precisely the “why not just go into the garden, or we will go and sit in the nice cafe down the road” that I’ve been trying to get to with her.
Thing is, there’s so much else here, I don’t know where to start. Yes she could walk half a mile six months ago, but now she can’t - we’re down to maybe 100yds with support. But she could go in the garden, or with me to sit in a cafe, or with support to a park, and she just won’t. That’s the light I’m struggling to get for her, before she is entirely bed-bound. We do have a cat which she loves.
Also she has - type 1 diabetes, which means sometimes deep hypos in the middle of the night which I have to help with (like last night), she wouldn’t be safe without me at night, that’s immediately life-threatening. She’s also got end kidney disease, which without any other problems at all will mean dialysis in a year or two, life expectancy maybe 8 years. Also for completely different reasons blind in one eye, deaf in one ear. And she’s got unrelated fibroids that have cause frequent massive haemorrhage, occasional blood transfusions, and one go in intensive care. Plus she lost both her parents last year.
I don’t see respite as credible. Her medical needs are complex enough that on the many times she goes into hospital, the staff usually leave her to order and organise her own care within the hospital (ex-doctor). In her current mental state, I don’t know how the next inevitable admission is going to go.
Does your wife still take an interest in MS and its treatments / ways of dealing with it?
I’ve had MS for 18 years since diagnosis after an episode of optic neuritis. Over the years my right leg has developed problems and while I can still walk I tend to use a stick around the garden or a scooter for longer walks. I mention this because one thing that I hope for is the development of a Myelin repair/remyelination treatment. I might or might not be lucky but I do tell myself to look after myself, try to do everything possible to slow down the MS etc. If I manage to do that for the next 7 years or so then, who knows, there might be something to help recover my walking ability. So, I’m signed up to various sites - including the MS Society - for news on MS treatments. Is that something that might give your wife a focus and a more positive outlook?
Sort of related to the above, I’m also signed up to the website and news from ‘Overcoming MS’. The website and also some books come from an Australian Professor of Medicine who has MS himself and makes various suggestions/ recommendations on how to help your body deal with MS. The suggestions aren’t put forward as some quack cure so much as how to stay as healthy and symptom free as possible.
The recommendations concern: diet, Vitamin D, exercising and mindfulness/ meditation to help keep a calm mind and body, plus keep taking the disease modifying treatment. In the main I follow the recommendations and I do know from experience that periods of stress can make my symptoms worse. Stress etc are definitely best avoided.
I mention the above because , if nothing else, following the various recommendations gives at least a feeling that I have some control over MS and am not totally at the mercy of the condition. Plus they help keep me generally healthy.
Would your wife find the website of interest, helpful and something positive to focus on?
Wishing you all the best
Thank you, I appreciate the thought and understand your point, but the career ship sailed nearly a decade ago. And I don’t particularly regret that side. I used to be in the tech industry, management, I would be ridiculously out-of-date if I tried to re-enter: with my background I would probably be in the white heat of the AI revolution right now, working 60-80+ hour weeks. But I’m not, now I make jewellery and I enjoy doing that at least.
So, I really do want to focus on how make what is, work somehow.
Yes, I know some of the above, and similar to you I think they do provide real help. Some of the mindfulness I think is part of CBT, which is why I keep suggesting that to her, as she has trusted that before.
I am somewhat hopeful about the myelin repair in the medium term (both ESI1 receptor at the fundamental level, and metformin trial at level of “might somewhat work”) but as we all appreciate time isn’t on our side, so all one can do is cross fingers.
the issue is CARE. i am at a lost her problems are not unusual in MS, no way, lots of people develop, diabetes, bladder issues, bowel issues, kidney problems, if i said STAND UP all of you who have one of them believe me the majority would.
You seem to be at a loss as you never dealt with MS person before.
I am going to be honest here, from what your saying she could have normal care from adult social services.
shall i give you my issues? I am 73. I eat very limited as i have developed gastropersis. several months ago after yet another UTI, on my test they found i had developed a rare BACTERIAL RESISTANT strain of Pseudomonas aeruginosa. (question raised is how did i get it, as its a water based bacteria. now they are talking about hospital in 2022 when i was there, ad it lays dormant and something has triggered it. This is potentially life threatening. It took 3 goes to find an antibiotic that would work. touch wood, but i did a lot of research myself and found that good grade Manuka honey would help and touch wood it is for now.
2022 i was taken into hospital with a heart attack where they found i had a narrowing of main artery. we all have something. as to FIBROIDS why didnt she have a hysterectomy how old is she?
i really think she needs PROPER care you cant provide it for her, its as simple as that, and its too much for you. You immediately have put BARRIERS up of everything suggested for her. You keep saying about her mental state, dont you think we all have mental states with this vile disease?
I want someone around me who is positive and wont pander to my self pity. i have a carer who has been with me on this journey for over 14 years, she was with me when my mum died, and year later when my husband died. she was with me, when i developed trasient epileptic amnesia and keeps an eye out on warning signs for it. she never panders to my misery.
I HAVE MS, i started blind in one eye in 2000 and didnt get diagnosed until 2016. From a fit young women who never stopped working to sitting around all day in misery.
BUT I rang social adult social care, did you even try and find their number? they are there to help us and are brilliant too. They can set up full care for her, which would give YOU A BREAK.
like i said having diabetes is normal in this country, my SIL has had it years, my brother has heart issues you just get on with it.
SHE NEEDS CARE. stop putting barriers up. i am sorry i am being honest here she doesnt need care in a hospital she needs a good care package with people who know how to deal with her.
why cant you take her out when she is having a good day then? I am virtually housebound, i refuse to stay in bed all day. the saying goes if you dont use your legs you loose your legs. Getting her up everyday to loo (i use a commode at night), would make her walk a little.
i seriously dont see much worse then anyone on this journey as i have met loads of people suffering the same also had friends who have died without MS but had awful cancers.
you need to talk to someone even MS Society, as i am thinking your mental state is going to be comprimised. I say all the above with the greatest respect to you, but i am not going to sugar coat it, welcome to the joys of MS, it is complicated and i would never have let my husband care for me. I have 2 care workers every day, breakfast and lunch. i take myself to bed as all i do is virtutally get into bed lol. i have someone who takes my doglet out for me.
i am progressive MS. TSH you need a break hun.
i follow the same everyday vitamin D my diet is uber healthy, i do mindfulness and meditation, i always look at something good everyday we have to just deal with it and work with it. its the best way to cope. xxxxxx
Hi Crazy Chick. I think I have replied to previous posts from you and, in my mind, I imagined a young 30-40 year old crazy chick but I see from your photo and recent posts that you are one of the great ‘young at heart’. My admiration and respect to you.
Totally agree with you about looking at something good every day. I’m a nature lover and lucky that I can just sit in the garden, ‘tune out’ and watch and listen to birds, smell the flowers, listen to buzzing insects etc. Not quite so easy in winter!
Hi hun yeh we just have to get on with things dont we. i rescued bella in december 2022, she has kept me going. so funny. i run a youtube channel of nice things, animals for sure.
i am PPMS but lately going into a progressive stage and struggling. tomorrow my hospital bed is arriving, and in a few months i will be receiving a power chair, as my mobility is finally failing, but everyday i get up no matter how hard it is. My son in law did this video tape for me to learn meditation, and it helps me a lot.
i am still a crazy chick lol. xxxxxxxxx
Hi Crazy Chick. Some perhaps bonkers questions but is that a West Country accent I hear and, is it your son in laws voice in the meditation tape?
I ask only because I once went to a Rudolf Steiner school in the West Country and some of the artwork on the tape and ‘Annie’s Nature Healing Cards’ reminds me of the sort of art work that the school and pupils would produce.
I also found your you tube channel. 
hi west country could be i was born abroad so lived all over the world and picked up accents, my dad came from somerset born in glastonbury but his mum and dad ended up in minehead, i had first cousins in widdecombe on the moor (farmers). keith is my ex son in law we met in cyprus as friends, then he met my sister long story, finally the got married 40 years then broke up, ad he met annie who is spiratualsist etc and they are a lovely couple, but he didnt come from down that way annie i dont know. but they dabble into all kinds of things even water dowsing, they live in bristol.
its his voice. i find his voice very calming lol.
Hi there and - Well, well, I too was born abroad and lived in different places! My Dad worked for something called the Diplomatic Wireless Service and he was a radio/ morse code operator in British embassies. The school I went to just south of Gloucester was a boarding school and I still know people from down that way ( been living in Scotland for decades now). The school was a Steiner/ Waldorf school. Steiner was an Austrian/ German in late 1890’s early 1900’s I think and had his own particular type of Christian- Spiritual philosophy ( the school was actually very nice and we didn’t get religion/ spiritualism rammed down our throats one bit). I guess it was that spiritual side that appeared in some of the artwork and which I also saw in Annie’s work. Interesting!
My father was in signals in the war where he met my mum in italy he was a morse code expert and could even deal with Japanese morse. i was born in ADEN, back not long after the war and mum had to travel on her own in an old troop ship took over 3 weeks of heat and hell but she did it. she didn’t speak very good english even back then 8 years after the war finished, i was born a 9 months later lol. i have heard of steiner had a friend who went there Wynstones School it closed in 2020.
i found the steiner schools fascinating. I ENJOY spiritualist things and ways of. you would really like annie she is lovely.
e
My Dad was ground based radio operator with the RAF in the war. After the war he met my mother and within a year they had married and gone to Baghdad where he was ‘posted’ with the Diplomatic Wireless Service, and where I was born. Before the war my Dad lived in Halifax where generations of his family had lived before. Lived with his parents in a two up two down , outside toilet house and where he was a shop assistant. For him and some others, the war gave him new and completely different opportunities and outlooks. From working class Halifax to travelling the world and places that very, very few other UK or Western people went. Some of that generation had really adventurous and never to be repeated lives - all in days well before mass tourism. I have vague memories of passing through what was then called Aden on a passenger ship when my Dad’s work took him and family to India.
It was Wynstones where I was for 4 years. As you say it closed down - after a poor Ofsted report - something to do with safeguarding. I really enjoyed my time there. Old classmates are meeting up somewhere near Stroud this month for a ‘70 year old lunch’. Unfortunately I can’t make it.