Hi there,
I care for my husband with primary progressive MS. We’ve been together 34 years. He’s been suffering with anxiety and depression as well as greatly reduced mobility for about the last 8. His personality has changed and he can be quite difficult. I am sure many of you can relate to this.
My bugging internal dialogue is asking just how far i should go in motivating him when he indicates in a small way that he wants to leave his room and venture out. He generally says ‘no’ to everything. He stays in his room which is (through his choice) a self contained unit within our home. He will go out with me only, never anybody else. He will currently only go to the football about once a fortnight. He loves that. He drinks too much and vapes weed to try and block out his physical and mental pain. He won’t accept counselling or physio. He says there’s no point. He has accepted anti depressants though.
I recently talked about a driving staycation and he was keen. Ive booked the ferry to Ireland and am in the process of finding accessible hotels. After a disagreement yesterday over me asking his view on furnishing the home study i use for my job, he has now said he wont go on the staycation. My instinct is to say ‘fine’ and go alone as i know it would be easier and i would enjoy myself. I have adult kids who can cover at home for me. However, i feel it would not be what’s best for him and that he wants to be ‘begged’ and motivated. He wants to feel some control. I just dont know if giving in in that way would be helpful…it would be great for him to get out and about but by me having to persuade him, it gives him more scope to be unpleasant and manipulative to me as he tends to use blame a lot towards me if i persuade him into something and it doesn’t all go perfectly to his liking.
Can anyone out there relate to this behaviour and advise?
I can relate but not advise. My husband does not like me going out alone but is a total nightmare when he insists on coming and can be very disruptive. For example, he does not like the books we read at the Book Club I chair and is very patronising but we are a group of mainly women. He is also disruptive at the quiz saying that the questions and quizmaster are stupid because he cannot answer them. The Book Club dinner in Jan he totally ruined for me by behaving like a senile toddler and he also ruined my Wine Club dinner in May by being a total nightmare and not wanting to sit opposite the ‘old biddies’ who were both at least 10/15 years younger than he! Already dreading the next meal out on 6th September.
My personal feeling is that if you have ‘cover’ is to go on your own. Living with someone who can be unpleasant and manipulative sucks out the joy out of your life and you deserve some happiness. Hopefully others will be able to offer input and opinions. My husband is 84 and I am 61. I have been caring for 11 years officially.
Hi Jo. Rather like @selinakylie I can empathise but have little advice.
My Mum had MS - diagnosed in about 1975 and lasted til 2006. She was an absolute stalwart and only cried once when she first got the diagnosis. In those days no-one knew what to do and she tried mega doses of Omega 3 and Brewers Yeast and other supplements. She managed to do office work for some years before she had to give up. After that she became weaker and although Dad took her away for a couple of short breaks she didn’t enjoy the disruption and preferred to be at home. They booked an Accessible cottage for a week and came home after 48 hours!
Eventually they became quite reclusive with trips to church on a Sunday being the only trips out - those were tiring for Dad with getting her in and out of the car and into her chair etc. so eventually that stopped as well.
When I visited, I would often find they had ‘had words’ and the atmosphere was frosty until I cajoled her to talk to me and got a laugh - then everything settled again.
Dad managed with the help of a carer twice daily for the last few years but they didn’t ever go out together. On the few occasions I managed to get him to go out (pub lunch perhaps, or shopping) we had to get a carer in to look after her.
It all took it’s toll but he struggled on. I agree you DO need to take a break if you can (I am not the one to take my own advice, I will admit) If you have booked the trip tell him you are going. If he refuses THEN GO on your own. You know he will be safe with family looking after him so you have nothing to worry about. He might moan and try emotional blackmail, but don’t give in - just think of relaxing and enjoying yourself without the worry of caring for him for a short while. If you give in he will see it as weakness and exploit it and you will never get a break. Sorry if that sounds harsh, but it is what can happen so easily, and not because he necessarily wants to hurt you.
It’s very easy to say this but hard to do it in practice. Good luck and I hope - one way or another - you enjoy a break.
Sometimes advise is disguised throuh other people’s experiences and so reading both yours is so helpful. Thank you. Just knowing we are not alone in all this is comforting. I have family and friends who will always be there to listen, but hearing from people who have lived experience of what it is like to be a carer to someone who struggles to appreciate what they have is really valuable.
I’m currently caring for my husband who had a stroke in Dec 2020 and then a cascade of other health issues. I’d love to get away for a break but he is reticent. We did get away for three days to visit some cousins of mine over the NZ but the drive there and back took a day each way and when we got home on the Sat evening I collapsed into bed and was washed out til Monday and beyond. So it can be a doubled edged sword going away together.
Hi @Jo_191212
Firstly, sending some empathetic hugs as I’m sure you’re feeling very conflicted.
I wanted to share a few thoughts :
You were saying that your husband’s personality has changed and he drinks, vapes but does accept anti-depressants. So, he recognizes changes in himself & the need for some sort of treatment, even if it’s not counselling or physio. However, he’s still very attached to only going out with you. As a reader, to me, it sounds like he’s scared of any change, but perhaps he’s feeling more different - there’s more change in himself or with the possibility of the trip it’s scary!?! Maybe the disagreement wasn’t really about furnishing the home study but something that triggered the emotions to come out, that he couldn’t express easily?
I’d say trust your inner voice that something is bugging him, but perhaps it’s not ‘just’ the trip?
Would it be worth having an assessment by your GP about his mental and physical wellbeing?
Some of his habits may exacerbate his emotions, I think we all know alcohol can amplify difficult emotions.
I wanted to share those thoughts first to explore something, beyond the trip, that could be appearing for you both now??
I think reaching out for our thoughts here, & your inner voice making you conflicted is also a sign that you think something needs to change / or is changing?
On that premise perhaps having a medical opinion could set your mind at rest when you go on the trip?
I do agree with @Chris_22081 and @selinakylie that you should go regardless of what your husband decides. I think setting a precedence with your family is also healthy so that, you can continue to support each other & that you can have respite time, as the MS is progressive.
I would also like to suggest that it gives you the space and opportunity to think about the bigger picture of how you can all manage moving forward. Having a medical GP assessment could help with that. Our inner voice, the inner critic can be harsh so please try to be kind to yourself
Self compassion is so important!
I hope that helps a bit!
@Victoria_1806 is quite right - set the precedent with your family so they share your caring roll sometimes. Then when you REALLY desperately need a break they are ready to step in and don’t make silly comments about ‘well you have always managed before’ and you won’t feel guilty about asking/telling them you are going away.
Having been very disabled for five years, I can understand why he wants to stay home. Ultimately it’s his choice. However your role is wife, not Entertainment Officer. Tell him you are not cancelling it, you need a change of scenery, but you respect his decision and would not wish to force him to do anything he didn’t want to. He has a right to decide what he wants to do, but so do you!
I totally agree with any view that says you should go, he has the capacity to make decisions and can therefore, live with the consequences of them.
Please make the most of the respite- my husband and myself have had no break in nearly eight years taking care of his mum, who uses her health to get us to be “ on tap.” It’s an incredibly hard pattern to break once started, so don’t even go there.
Thank you for your reply and advice. You are correct that he is 100% reacting through fear. Going away is something he wants to do but his fear is clear to see. He also has many autistic traits. He’s not diagnosed but our son is. I’ve asked the GP to put him on the wait list for autism diagnosis but we will be waiting around 2 years for that. He hates change unless it is all completely on his terms…to the extent that if i buy a new saucepan without consulting him first, he will moan and sulk and refuse to use the saucepan. He is incredibly stubborn!
Im not sure what a medical GP assessment can offer though? Im up for trying everything but so far there has not really been that much on offer that he will agree to.
If it were me, I’d give him a choice - stay behind with family supporting him or go on holiday with you as planned. The decision needs to be his though - then he can’t blame you either way (well he can try, but you can then point out it was his decision.) Either way you get to go and that’s important.
Re autism diagnosis, I suppose it could be helpful in that he would know why he experiences life as he does and it could help those who know him understand his perspective more. It could help him and you put in place ‘autism friendly’ supports and he/you could request ‘reasonable adjustments’ from services (doesn’t mean they happen though.) He may benefit from talking to other people on the spectrum about their experiences.
Hi @Jo_191212
I hear you. Gosh 2 years is a long time for a diagnosis but these days nothing surprises me. I was thinking along the same lines as @Melly1 that someone else providing an objective assessment could help reframe his mindset. But I hear you in that the diagnosis itself may not change much.
Fear & stubbornness was something my Dad had in spades due to his vascular dementia. Plus cantankerous, demanding and in another moment self-recriminating. The mood swings became worse.
I wonder if you going on holiday and your son talking to your husband about himself and his own diagnosis, & fears could help, and maybe introduce him to the idea of any local support-groups or services …& maybe your husband could open up to him and possibly do more with your son?!? Just providing them with this space to chat could be a stepping stone step, and to enlist the support of your son more?
I agree with everyone he has to make his own mind up if he wants to go. I also read between the lines that you really want him to go with you…maybe the step is just too big for your husband right now, but something to work towards, and your son could help in the discussions with your husband?
as @Melly1 says facilitating him chatting with other people on the spectrum could help him, & to feel less dependent on you…but I guess this can only happen if your husband is motivated to do that too
I keep thinking that a bit of time on your own, in itself, is an opportune change in dynamics and routine, to help him reconsider things, what he’d like to do & to go with you next time, or maybe your son join too??..
Whatever & however you decide to do things I just want to share that my Dad didn’t ever change his routine, and he was VERY reliant on me and Mum. So Mum and I organised our respite times carefully incl how we ‘sold’ the ideas of change to him. Hence, why I really hope you can go have respite & relax time for yourself, to recharge.
lots of ifs, maybes and coulds in the above, but hope the thoughts offer some ideas
I am now a part time carer for my son with learning difficulties, but for 2 weeks a year I go to Greece. I can only afford it as my late husband had life insurance though. I have cared in total for 10 people, and I’ve had 8 operations. I need to get away from everything, eat, sleep, sunbathe, swim without anyone wanting anything. I can switch off entirely. On my return, I feel well again. We all need to take time out for ourselves sometimes. It may help your husband appreciate you more on your return.
Thank you @Victoria_1806 I am thinking the autism group may be more helpful than anything if i can find one that he is willing to access. He struggles with social communication and it has got worse since isolating himself. I will find out what there is locally for older autistic people and if a diagnosis is a prerequisite or not…
Good idea, @Jo_191212 Similarly aged locals could offer a comfortable way to connect for him And hopefully for you too.
Let us know how you get on, if/when you manage to have a break too.
