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M.A
My husband with PPMS losing himself

Hi I'm new to this so sorry if I make a mistake. My husband was diagnosed 13years ago with primary progressive ms but they said he probably had it for a few years earlier but didnt know. He struggled to keep working but 8yrs ago had to give it up because he was finding it hard to walk, he is now in a wheelchair and his limbs are solid and his neck is getting stiff now too. He lost the use of his left hand and now the right is going the same way, we have fought to keep it going but his hands are clawed in. He is just out of hospital today after having a really bad UTI and was In for 2 wks. I just feel hes losing himself hes going into himself like he has no emotion or conversation, he seems spaced out a lot of the time and sleeps a lot. I am usually a strong person and I care for him on my own but does this happen is he slowly going into himself will he lose the ability to communicate? I put it down to the UTI but if I'm honest with myself I've been seeing it happen for the past 6months. Is it something I should brace myself for? I asked our ms nurse about it but I can't get a straight answer, I know everyone is different and effects all ms suffers differently but I need to get myself ready for what's to come. I'm not coping emotionally at the moment cause we have been married 25yrs next yr and I'm losing my best friend ☹

Hey M.A

I'm sorry, I don't have any experience whatsoever, but I just wanted to say I hear you and feel your pain. So hard

Hi,

I only saw your post this afternoon and I hope it's not too late to reply. I don't know why you haven't had more replies by now, this Forum is usually so supportive. It is very hard watching the person you married become so ill.

Your isolation comes through quite clearly in your post so it seems that you're not getting much support from family or friends. Does your husband have any mates you could call on to help take him out of himself?

I can't make any predictions about your husband's MS but what you should brace yourself for is taking on too much on by yourself. You should be able to get carers in to give you a break from time to time. Contact your local authority's Adult Social Care team and ask for an assessment.

Please come back to us, I don't want you to feel that we don't understand because we do.

Best wishes,
John

I have MS

MA, so sorry to hear that you are both having such a tough time. The mental impacts of significant changes in how our bodies work (or don't work) is not often taken into consideration. It is important to try and find some people who can help, ex colleagues or people with similar interests (past or present).

It is also vital to be kind to yourself to keep yourself healthy and happy enough so that you can provide the necessary support.

Good luck

Mick

M.A. How are you? I’ve only just joined this forum and seen your post! I know exactly how you’re feeling! Not only have I watched MS take everything away from my husband bar his speech but it has also changed our relationship. We will have been married 35 years in July but 99.9% of the time I feel like his hated parent rather than his wife! MS exacerbates traits that were already there but maybe mild and also throws up new ones. It’s like someone has set off a bomb in the heart of your relationship and the ripple effect keeps on going! It’s easier said than done, I know, but we mustn’t take things personally. The sheer frustration at not being able to do what you want to do, being reliant on what start off as strangers for the most intimate of tasks and seeing your loved one struggle to cope on their own and give up a lot of their life is very hard! 

It is absolutely true that you take everything out on those close to you. I can thoroughly recommend getting friends and family involved-it gives you a break too! I find that just a phone call from a friend or family lifts hubby’s mood. I’ve now got him on Skype which has also helped immensely. It stops him thinking that I’m having such a wonderful life and that everyone has forgotten about him! 

It’s only natural that, when you spend vast amounts of time in bed or isolated, you become introverted and just dwell on how much you’ve lost as well as the fear of an unknown future. I think a lot of their actions are through fear that you’ll leave them so they seem to press the self destruct button so that when you do, they’ll say I knew that was going to happen! 

Have you spoken to your gp or ms nurse? Your husband sounds like he may be depressed-so common with MS! I came to the conclusion a long time ago that if I don’t care for myself, I can’t care for hubby or my 87 year old mother with poor mobility. Your social worker will be able to point you in the direction of support for carers. This excellent forum will always be here for you! We rant, scream, cry and laugh together and, believe me, it helps! You are not alone, we know exactly what you’re going through and there’s always someone who can offer tips and tricks to help you cope!

Take care and remember that it’s the MS that’s causing life to be so challenging and the man you married is still in there. I get glimpses of him every so often and that makes it all worthwhile! Love and best wishes Juliex 

So eliquantly put Julie you have hit the nail on the head x

Dear MA,

I hope the comments above will have helped. From my own background, I have been a carer to my wife Kym who was diagnosed with PPMS 21 years ago. Following diagnosis, she lost her job after 4 years. It didn't help that she was also diagnosed with epilepsy soon after the diagnosis of MS, and so we were contending with frequent hospital visits brought about by seizures, sparked by UTIs. To help prevent the frequency of UTIs, I asked the GP if Kym could have a low-dose antibiotic daily - this was an idea I came up with and I was pleasantly surprised when the GP said yes, it could work, providing we vary the administration between 3, to prevent a tolerance being built up, so Kym was on amoxicillin, ciprofloxacin or trimethoprim, one for say 20 days, then I would change it to one of the other three by rotation and that did help prevent the frequency of the UTIs.

I too had to witness my wife losing the loss in her hands, various things were tried, in the end we just made comfortable splints she could hold onto. In relation to muscle stiffness/spasticity (limbs getting solid, pain in the neck region), you could have a word with your husband's consultant/MS nurse. When we did that, we were able to go on a programme in London (we have lived in SE London) where my wife had a small op to insert a baclofen pump in her tummy and this then released baclofen daily via the spinal cord which enabled her to have less stiffness primarily in the legs which made life a lot easier for Kym. The pumps get refilled bi-monthly just with a simple outpatients injection. 

With ref to your hubby sleeping a lot, this is sadly going to happen and it might be the bi-product of the drugs he is on. I was able to reduce 1-2 of Kym's in negotiation with medics which helped, but she too, slept a lot  we focused on encouraging conversation at mealtimes or later in the day when Kym was more awake. I also witnessed the gradual loss of conversation, Kym becoming more softly spoken and not being able to understand her so easily, It is something you just have to grapple with unfortunately. Sometimes I was able to joke with her and play a multiple choice game of working out what she was trying to say, and she enjoyed that as much as I did ! It would be good if you can get your husband out perhaps with some old friends perhaps to the pub or the park, just for an hour or two for a change of scene if he feels up to it, or encourage an old friend to come and visit him ? 

I too witnessed plenty of those in the medical profession in the company of Kym and I who would not give us straight answers - simply infuriating, it was like they were talking in riddles ! Or they would deliver a few sentences and I would have to read between the lines to work out what they were trying to say. Annoying isn't it !! 

I hope you are OK, do try to stay positive if you can. It is very hard emotionally. I really enjoyed taking Kym out when I could, especially on holiday, in the company of friends out to help give my wife a good time and also support me. Obviously that is now difficult with the virus outbreak but it might be something you can think about for the future. I could point you in the direction of nice places to rent out which have good facilities for those with MS, where you can also book local carers to come and assist you with the care. 

I hope the above has helped a bit, do get in touch if you need to, there are always solutions, always, its just a case of finding them and remembering we do our best as loved ones and carers and in the little everyday things, he will be greatly appreciating all that you do for him even if he might not always be able to show it ! Best, Matt x

 

 

R47

Hi Matt

          My wife has had ms for 16years she is now at the stage of secondary progressive unable to move any limbs,but still has good speech and swallowing.The reason I'm  replying is to do with uti's my wife has a daily dose one 100mg trimethoprim at night,but the district nurse said to try giving a bladder flush once a week.This worked for us and she has gone a year with no uti she also has a pubic catheter.I hope this helps and all the best for the future.

Dear MA,

It can be very difficult to deal with the avalanche of feelings. Realising that one may be losing one's independence is bad enough, but feelings that one might be becoming a burden to someone that we love can be enormously difficult to deal with, especially for someone that prided themselves in their ability to provide and care for you in the past.

It may help if you understand that your partner is probably working through some very deep and difficult feelings of grief, loss, perhaps guilt, feelings of hopelessness, plus many other feelings and fears besides. With MS sex life can plummet and losing that intimacy can be an awful experience. Intimacy is more than just sex though and a good cuddle and caress goes a very long way!

Grief is a natural outcome of losing our autonomy and so many things. Protecting loved ones is a very strong instinct and really hard to cope with if we feel we can't anymore.

If you learn about the grieving process (Cruse is a free grief counselling service you may wish to talk to) you will begin to understand how deep feelings of hopelessness can ensue as part of that process, but also what the next steps are for your husband, i.e. the building of acceptance. I mentioned Cruse because you too are almost certainly dealing with your own feelings of grief, magnified by seeing your husband so unhappy and feeling helpless. Don't take yourself out of the equation, you need support too.

So, instead of just asking him how he feels, which is no doubt prompting him to look inward rather than outward towards you, have a snuggle and tell him how YOU feel, how concerned you are at seeing him so unhappy, and perhaps he needs reminding that you are still a couple, working together through thick and thin. Let him know that you are doing all of the things you can think of to help him find time to deal with this enormous change, and ask him what else you can do that will help to make a difference. Sometimes we can inadvertently be in the role of a carer when what is needed is an adult partner.

You may also find that it can help for you both to let your imaginations wander to explore what would happen if your situations were reversed. Encourage him to tell you how he would feel seeing you dealing with something so difficult. I think you’ll find that he’ll reveal what his main concerns are if he does this little ‘swap roles’ with you, and it will be a way that he can open up and come to terms with his own feelings.

It will be a wonderful opportunity too for him to understand how his behaviour affects you too.

Communication will almost inevitably be very therapeutic for you both and you will be planting some very valuable seeds of emotional recovery.

I hope I have offered something of value.

Good luck.

Dave

Hi MA, this is a sad way for your hubby to be and for you too.

I believe it is quite rare for MS to take quite such a toll on one`s personality.

Do you think you could use some help?

 have carers to give my hubby a break from looking after me 24/7.

If you do, you could ask social services for  an assessment.

It doesnt mean you arent doing a great job....it just means you deserve a break.

#Boudsx

Reading all these replies to M.A.s post, You are all wonderfully supportive.

I'm not a carer. I have RRMS.

This must be the perfect forum for everyone.

Moderator's please accept our thanks.