What works for you?

Caring for someone with MS
1

I’m a carer for my wife (Tog) who has had 2pms for many years, can’t use her legs at all, very limited use of hands/arms so needs help with drinking and feeding and personal hygiene. There are many other pwms at a more difficult point so we’re relatively lucky, but I wonder how their unpaid carers cope, especially where folk have cognitive problems? We’re all different and find our own way - there’s no answer that meets all needs, but I would love to know how others manage to keep sane.

For our part, we use a lot of humour, often childish but as long as it makes us smile that’s OK. We watch people passing outside and they all have names (e.g. fraudulent stick grandad, Mrs Sparkle, draggy girl, bouncy boy and others I’d better not name here!). We name the kit we use (Cathy the catheter, Sheila the shower chair, Keiser Bill the large pressure-reducing armchair …).

Much harder to do, but of great value to me when I can do it, is to ACCEPT a situation, inwardly, and not react. It doesn’t mean you like the situation, but if you can accept what IS, then you can think rationally and work out how best to move forward. It might be a situation where something keeps going wrong, or something ‘sharp’ that’s said, or just when I’m tired and irritable. I don’t always succeed with acceptance, but I’m getting better at it slowly and it does help me.

So I was wondering what things other carers have found helpful for them. By sharing ideas we might help others, me included.

OldUn

2

Hi you and your lady wife.

I am the disabled one in our house and my hubby looks after me mainly.

I have a condition similar to PPMS…HSP…I was wrongly diagnosed with PPMS for several years. Hence my membership here, where I have met so many kind and helpful friends.

For the first 11 years of my illness, hubby looked after me on his own. He has rheumatoid arthritis and I knew it was getting worse. But he insisted it was his job to care for me.

I was persuaded by a social worker, to get help in the form of carers.

It took me 2 years to convince my OH it was the right way to go.

He reluctantly agreed and we have had the help of 3 lovely ladies, who have made such a differenc to our lives, for 4.5 years.

They also take me on short breaks to give my fella a well deserved rest.

Have you thought about this at all for yourselves?

I pay for it via Direct Payments and was assessed by Social Services. I cant recommend it highly enough.

Best wishes,

pollx

1 Like
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Hi Boudica and thanks for the reply. Sorry to hear of your HSP and wrong diagnosis, it must have been so stressful for you both.

Thanks too for the suggestion of the carers, I’m glad it worked so well for you. We had paid carers in following her pneumonia but the experience was not good and quality of life dipped to a very low level. While I’m fit I’d rather do it myself and then when things start getting too hard we expect to hire a couple of P.A.s so we can build consistent and good relationships.

I went to see another carer recently who was bereaved about 18 months ago who had been in a very similar situation to me and we had a lovely natter with deep understanding of all that was said and all that wasn’t said too. We swapped ideas and could immediately see how both of us would have benefitted if we had met (say) 10 years ago. I’ll be keeping in touch with him of course, it’s so lovely to find a kindred spirit! I’m still hoping others might be able to contribute their own ideas about how they cope and any kit or training or lessons they’ve learned.

Thanks again,

OldUn

1 Like
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Are you in touch with your local MS Society? If you were to take your wife to their meetings it could also be beneficial to you by introducing you to other careres and hearing their coping strategies.

Best wishes.

Jan x

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Carers ! I hate predictive text

Jan x

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Hi Jan, thanks for the kind thoughts - and yes, I’m with you on predictive text!

Yes, I’ve been a member of our branch for some years now and know some others who are in a similar situation to me. You’re right that it’s a good opportunity, and I’ve certainly found it helpful and it gives a much wider perspective. It’s so easy to become wrapped up in your own small world.

Actually there’s an underlying problem for carers at MS branch meetings. We usually go as couples so the person you care for is there and this limits what you say. In our home life there are always things, usually small and silly things, that can rub you up the wrong way. That’s two way of course. But it is difficult to talk about how you’re actually feeling in front of them, they have more than enough to cope with already. Yet letting off steam could be a wonderful relief, I’ve witnessed that in some very specific circumstances where only carers were there and they were all in at late stage MS, and the feelings that were expressed were quickly in at the deep end. It just flooded out. Yes, it would be possible to engineer that to happen at a meeting, but not easy especially in a single room, and could probably do with a trained facilitator too.

I don’t know how many branches put on events just for carers, I’d guess not many. Caring sort of creeps up on you so many people don’t recognise themselves as a carer, and for those at the earlier stages I think the sort of scenario above would scare them witless. Yet I perceive a need for ‘later stage carers’, partly to let off steam but also to learn from each other in many aspects such as physical, mental, equipment, paid carers difficulties etc.

No worries, I’ll dream on!

OldUn.

P.S. Why don’t spell checkers ever recognise the word carer?! Spell checker on this system suggests these alternatives. Cares, corers, chargers, charmers, charters, carets, caters, carter and cadres. Take your pick!

7

Is it true that multiple sclerosis can be cured via stem cell treatment?

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Some people who have paid for this, have seen a short term improvement. But there is no guarantee that it will cure ms.

pollx

1 Like
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Short answer …NO

It could be the most promising line of research … come back in 10 years.

Geoff

10

My situation may be a little different to yours in that my wife is capable of fending for herself for a while (I still do all the cooking cleaning shopping etc) but she can manage for a while on her own and so I have hobbies which I pursue out of the house, mainly birdwatching, but just coming up about now is Butterfly and Dragonfly season and I spend time photographing these little marvels.

Just getting away for a while helps keep me sane - more or less.

I am also an amateur potter so I can slope off to my garagio and still be only a phone call away.

When the spell checker gives you the alternatives, there will be one option to add the word it doesn’t recognise to the dictionary/database ready for the next time you use it.

1 Like