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Carers and cared for

I’m not sure if this is the correct forum of if anyone watches this. I have a future concern in that I was diagnosed with MS over two years ago and have managed to keep it at bay ever since. However, my wife has terminal cancer and I am her full time carer. I need to keep any further development of MS symptoms away and refuse another attack for at least the next nine months. At present I do that by will power but is there anything else I should be doing?

Secondly, if or when I am alone is there any advice on what I should do in case of an attack? Being alone with MS I suppose is a concern especially as I’m older (65).

Is there anyone else on this forum who is going through a similar experience?

Keith

Hi Keith,

I am very sorry about your situation. I’m afraid you cannot control MS attacks by willpower, or any other method. The only things that have shown modest success are disease modifying drugs (DMDs), but I do not know if you are eligible, or even want to try them - especially as there is a possibility of side-effects - particularly in the early days, although these tend to reduce. You may not feel drug side-effects is something you can live with at the moment, given how much else you have on your plate.

Vitamin D may have some protective effects against relapse, so I recommend to take a good supplement, whether or not you’ve been found to be clinically deficient. You have to take extremely high amounts to overdose, so it wouldn’t hurt you to supplement anyway, even if you weren’t deficient. And they’re pretty cheap!

I don’t think it’s possible to guarantee a relapse-free nine months, even with the most powerful current DMDs. So the crucial thing is not so much prevention, but to have a really sound plan in place in case it does happen.

Is your doctor aware of your situation - that your wife is terminally ill, and you yourself have MS, and could be taken ill with very little notice?

I’m sure care for your wife could be arranged, in an emergency, but it may be wise to discuss it up-front, so you know what the plan would be, instead of waiting for it to happen. This could give you some peace of mind.

As for being “on your own” with MS - this is a worry at any age - not just at 65. I live alone, and do worry - I’m 48.

But I’ve been diagnosed about four-and-a-half years - probably had it many years before that - and have so far never had a relapse that was instantly incapacitating, to the extent I wouldn’t even be able to call for help. It doesn’t tend to be like heart attack or stroke.

But you could ask your doctor about one those emergency SOS bleepers you can wear round your neck. I’m not sure if there’s a charge for them, but if there is, I don’t think it’s huge.

I’ve wondered about getting one for myself, but as I’ve never fallen or been completely incapacitated, I wonder if that’s being a bit paranoid. But if I was the carer for another person, I probably would. It’s OK to take a gamble with your own safety, but not with somebody else’s. Ask the doc about that AND emergency care arrangements.

All being well, you won’t have a relapse, and it won’t arise. I haven’t had one for years, despite doing nothing special about it (except the Vitamin D). I certainly think it’s luck, rather than technique, but it is possible to go a long time without relapse, so you might be fine.

Tina

I am sorry that your wife is so ill.

It would be a good idea for you to have a contingency plan in place to cover in broad terms what happens if (heaven forbid) you are suddenly unable to care for your wife. Keith, I’m no statistician, but my guess is that you are just as likely to be suddenly incapacitated by something out of the blue (pneumonia, broken leg, take your pick of life’s infelicities) as it is that you will be suddenly incapacitated by MS. No matter. The same issues apply.

A few things that you need in place:

  • A clear and understood route for you to ge help in the case that you should suddenly have bad MS trouble (having spoken to the people concerned, made a note of their contact details etc).
  • A plan in place for your wife’s care in the case that you go faulty. It is worth talking this through with the GP/hospital specialist/Macmillan nurse/social services/private care provider or whoever you need. Talk to them now. If you would be setting private care arrangements in place, work out who you would want, get them out to meet you and your wife while you are well, so you can easy activate that plan if you need them.
  • Make sure that everyone who would need to help is primed and understands the situation.You aren’t going to be able to foresee every detail, but you can get an outline plan that would get things started, it will give you some peace of mind.

Then you can stop worrying about that and concentrate on the demanding and exhausting business of the day-to-day. One more thing, and it’s important: look after your health and welfare properly. Eat properly. Sleep as properly as your responsibilities allow. Get some fresh air (ditto). Willpower’s great, but you have to give it a fair chance.

Good luck.

Alison

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Many thanks Tina and Alison for the very sound advice.

I will certainly try the vitamins and more fresh air. Rosemary has lost a lot of weight in the past year since her last operation so has needed the heating up fairly high over the winter and that affects me quite a bit. On the planning side, we are in regular contact with the hospice so the care plan for Rosemary is well in place but it is a worry should I have an attack myself, however briefly. We have a daughter living 40 minutes away but she has her own family and work. We have lost 4 out of 5 of our closest friends to various causes including cancer in the past two years. That’s the way of things but it does make you feel more vulnerable. The MS nurse at the hospital does know about Rosemary so I guess I could also call her if I have problems.

Thanks again for your help.

Keith

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