Hello to all. I’m newly signed up and ready to offload so here goes: I care for my husband who was diagnosed with MS 8 years ago. He has very restricted mobility and is in a constant state of pain and resentment. He’s 64. I’m 55 and work full time in a job I really like. Two of our four adult children still live at home and we have a family dog. I mention the dog because he is essentially the only family member for whom my husband may occasionally have a kind word.
In short, I have found myself in a situation where my husband wants us to move out and leave him to his misery with the dog. He can care for himself just about but can’t look after the dog or house. He suffers with depression, drinks too much and frequently lashes out verbally. He has had counselling two years ago which really helped but now does not recognise that he is depressed and is adamant that my lack of sympathy and affection is the cause of his low mood.
I feel terrible guilt that I am wanting to give up on him after 32 years but I hate the fact that my younger son and daughter are having to witness his unreasonable and unpleasant behaviour daily. I just don’t know what to do next…
How old are your children? Do you own or rent your house?
Hello and welcome!
Please tell us more about your family. What are the ages of the kids? What is the nature of the impairment? Is it a physical or learning disability? Have you asked for a needs assessment or not? Sorry to be so intrusive in asking questions but without more information, I cannot tailor my response.
Hi Jo,
One of my family members, by marriage, is a MS sufferer as is the husband of my best friend. Even so I don’t know that much about it. What I do understand is that there are two varieties. One which gets worse progressively and the other in fits and starts. Forgive my simplification.
Which ‘variety’ does your husband have? I sympathise with him in that he must be devastated and, as you surmise, depressed. However I do also understand from the limited experience I have, that there are methods of coping and steps to take, For example the family member has been ‘gluten free’ for a number of years and believes absolutely that the diet helps considerably. Also has identified ‘triggers’, for migraine, tiredness, pins and needles and other symptoms, which are studiously avoided. Chocolate being one.
Your husband sounds as if he is feeling very sorry for himself. Understandable but not helpful. Moan, moan, moan, it’s not my fault so it must be yours, no-one understands me kind of thing? He doesn’t really want to be left alone with the dog, it’s a ‘no-one cares’ sort of cry. That is so hard to deal with and maybe placating him is not going to do the trick.
Have you tried laying down the law? Put aside any ‘poor him’ feelings and tell him that his illness affects you and the children too, That you are prepared to go through it with him, support and help him, but not if he continues to be so negative and refuse helpful things like counselling.
How about the ‘needs assessment’? Any mileage there?hings like counselling. Tell him that if he really wants to wallow on his own, then he can be the one to move out. You know your husband best, maybe that won’t work at all?
How about counselling for yourself which will help you cope? Have you had a good talk with your adult children and got their ‘take’ on the situation?
It’s hard enough looking after someone who needs care. Even harder if that person is abusive and not appreciative.
Keep posting. The more you reply, the more bits of advice will come your way. Not all will suit but lots may help and at the very least you will know someone is listening and on your side.
I’m a carer for my wife who has MS (used to be Relapse/Remitting but now progressed to Secondary Progressive). MS is a very nasty illness, in that some of the symptoms are physical and can be seen, but some are not. It will all depend where the lesions are in the brain and which parts of the body are subsequently impacted.
With my wife it’s almost entirely physical/motor impacted. For others though, and I think in many ways this is more cruel (if any ‘flavour’ of MS can be less/more cruel!), the cognitive faculties are affected. This could be the case for your husband.
If the lesions are impacting the cognitive functions, this could easily impact your husband’s personality. Obviously I don’t know your husband and what he was like before MS kicked in, but if he has had a complete personality switch then this could be as a direct impact of his MS.
I don’t have any experience with this personally so can’t offer any direct advice but it could be worth contacting the MS Society, or at least looking through their website (and the various other MS related websites). Quite a lot of information out there that might be of help.
As for your husband’s depression, again for MS sufferers this is quite common and is a risk to the sufferers health (suicide unfortunately is a major cause of death in MS patients!). If he could get some more counselling this may help both him and you.
All the best.
Thank you all so much for your helpful replies, especially Carl and Elaine.
Just a few more details then: my kids at home are 22 and 24 one a student and one in supported employment with a diagnosis of high functioning autism. He’s great. He generally copes well with my husband but does get fed up with the 'no body understands" attitude. Much of it passes him by somewhat. My daughter at home sees and hears the worst of it all. She is a very positive and beautiful soul and my husband resents her for it and is jealous of our relationship.
His illness is primary progressive MS…it is a slow and steady decline. He can just about move around a few steps while hanging on to furniture inside or in the street with crutches very slowly. He behaves as though he is in constant pain then when I ask how he’s feeling he says he’s fine except for the fact that I am annoying him. This is a definite change over the past few years. He was previously quiet and not great with verbal communication but he was able to acknowledge positivity for himself and others but tgat has now gone. His cognition is definitely affected and he is forgetful and confused but in addition it seems to me that he has chosen to shut down emotionally and to isolate himself. He never speaks unless spoken to and everything makes him angry.
I agree that counselling seems to be the next step.
I hadn’t thought of a needs assessment so maybe I could contact his MS nurse who helped us before when he was suicidal.
Once again though, thank you all for your support here
Forgetfulness and confusion is quite a common symptom with MS, often referred to as ‘Brain Fog’. Can be very frustrating for the sufferer and for those around them if this isn’t what the person was like previously.
Definitely try to get some help for both yourself and your hubby. MS nurse definitely first stop. See if you can get some physio for hubby too as it’s so easy to lose physical strength and mobility and it’s so hard to get it back once it’s gone.
All the best. Carl
Physio will help. Ask your GP to refer you to a physio. And also see if you can be referred to a memory clinic too. Memory problems are common in those with ms.
Thank you That a. Memory clinic is a new one on me; I will look out for that. The physio has previously been disappointing- he has now lost interest in trying to improve or maintain mobility…hes worried about memory loss though and may be open to that and counselling if we can get it. Thanks again 