Newbie

[VJay62]

Hi there. I'm new to this site and finding my way about. My brother in law has been diagnosed with MSA and although I try to support him and my sister as much as possible I'm struggling. He is in denial and won't let OH visit his home although his consultant recommended this. He's given up on walking (although he was told to use it or lose it)as its too hard but would manage with a walking aid but his pride won't let him. What can I do to make him accept this is happening and both their lives could be helped albeit in a small way?

[FredaE]

Old English proverb: You can lead a horse To water, but you cannot make it drink. I am sure there is something similar all over the world.

It is very distressing for you but there is no way you can force him to take the good advice he has been given. You might be able to get him to walk to something he really wanted to go to but he needs more than that to be any real help. He may change as he comes to accept the horrible diagnosis but at the moment refusing to admit it exists is a sort of protection........if I refuse to beleive it then it can't be true......All you can do is encourage him without putting on pressure and watching out for signs that he is beginning to accept .When that time comes you may be able to make use of his pride to encourage him to give the disease a good run for its money by not letting it stop him doing what he wants to do. In the mean time you have to protect yourself by accepting thst you have done all you can. I did not quite understand the reference to OH. Is there a problem there or is this a new thing to do with the diagnosis?

[VJay62 in reply to FredaE]

Thanks for your reply FredaE. By OH I mean Occupational health that would advise on items needed for the home. I offered him a grab rail (I have one from when my father in law used it)for the shower today as I know he's having problems keeping upright in the cubicle and not showering because of it but he said he could manage by leaning on the wall. I am absolutely terrified he is going to fall as he's very unsteady on his feet. Especially coming downstairs. I was telling him to concentrate today, going on posts on here. I realise I have to take a step back and just be there when he finally realises he does need help.

[FredaE in reply to VJay62]

I think that with things like the grabrail in the shower you would be justified in installing it without asking as ALL showers need grabrails. If it is there he will use it - might even be quite pleased. You can tell him that you don't want people to blame you for letting him use a dangerous shower.Nothing at all to do with his illness!!.

[Hellebelle]

I think a lot of people go through a denial phase once they get a diagnosis. Also, the condition can cause a lack of insight. I think the advice you have been given by Freda is excellent. You can't make someone do anything but with time perhaps he will see that trying to carry on as much as possible will give him more independenceand enjoyment in life and one in the eye for this awful condition. I wish you well. It's so frustrating for you all.

[VJay62 in reply to Hellebelle]

Thanks Hellebelle. You're right it is an awful condition and although he's accepted he can't walk very far now so just doesn't he won't accept it when it comes to loss of bladder control etc. He hasn't followed any advice given him by the consultant re his bed, getting a seat to help him stand up from sitting etc....It is very frustrating and I honestly think he's going to have to fall or wet himself in public for him to realise that unfortunately this is his life now. He also uses it to his advantage sometimes if you ask him to do something he'll reply "I'm not well". Which we all laugh at....

[Hellebelle in reply to VJay62]

Hi, again Freda has given great advice. All showers should have grab rails. My dad was the same with MSA but now loves the grab rails and the rail on his bed which assists him to get out of bed and helps prevent falls. If it's done gradually, he might come to accept if more. Good luck!

[VJay62 in reply to Hellebelle]

Thank you. Just even being able to type my thoughts are helping and hearing others advice.

[FredaE]

I fear you are right about the bladder problem. One small suggestion here -some fabrics go a very different colour when they are wet and wet trousers are very humiliating. If you can make sure that he goes out in trousers that don't change colour much HE will know about his accident but the rest of the world may not notice. Otherwise he may refuse to go out at all.

What Hellebelle says about insight is very true. Our daughter lives in France and in the early days my lovely late husband was worried about travelling on Eurostar to visit her. She had just moved into an exciting new house and we both knew it was the last chance to see it before he got too ill to travel

We did a rehearsal of how long his incontinence pads would last. We did it three days running. Looking at the clock and saying we shall just be coming into Waterloo how long have you to go before it needs changing and factoring in all sorts of things like delays on the Underground, so that he could be sure of being within reach of changing facilities. In the end we had worked out a foolproof sysem where whatever happened it would be ok. He agreed that it would be fine.... and then flatly refused to go because he did not feel safe. There are times when even the kindest and most patient of us can't resist a full and frank discussion and I am afraid that was one of them.

[VJay62 in reply to FredaE]

Aww FredaE I know exactly where you are coming from on that front. He was actually offered a condom catheter to see him through the flight to Spain as he spends a lot of time out there but flatly refused. Driving to the airport he told my sister he needed the toilet. She couldn't stop as they were on a motorway. So he wet himself.When she asked where his pad was his pulled it from his pocket. What can you say ???? Thankfully they were staying overnight in a hotel so was able to change his clothing.

[Hellebelle]

This all sounds very familiar. We had to go down the route of a catheter in the end as my 80 year old mum was on the verge of a nervous breakdown. I have to say, since then, less washing less embarrassment and better all round.

[VJay62 in reply to Hellebelle]

Thats good Hellebelle. Hopefully he'll get one at some point.

[Diane831]

could you get round the grab rails in the bathroom by saying that your sister needs to be careful as she has to look after him so it would be safer for her. I often hold the rail in our shower, that was for Geoff, whilst I wash my feet!

[VJay62 in reply to Diane831]

I think my sister is just going to put it in. She doesn't keep great herself so she'll use that as an excuse. Then he can use it if he feels he needs it.

[chester2107]

My dad was diagnosed 3 years ago at 80 years old - so lucky he wasn't younger , he was always fit and active, but he has given up on walking so his legs are so weak now, I tried to get him to walk more but he just refused , which makes it so hard for my mum , I hope he takes your advice and tried to keep using his legs

Regards

Elaine

[VJay62 in reply to chester2107]

It is so hard on and frustrating for the partner too.I used to take him walking every day as for some reason he preferred to go with me . He says it is too hard now. It is heartbreaking to see him struggling but also to see him giving up. The thing is he's fed up sitting about all day but won't even entertain the thought of a mobility scooter.

[chester2107 in reply to VJay62]

we went to a support meeting yesterday

quite a few people there, most had walking aids, there was a lady there who was so positive , even though my dad wasn’t keen , it was good to see people’s perspective on the condition , it’s worth going , even on your own ...

elaine x

[Chris6255]

Hi Vjay62

I didn’t realise how great shower chairs and grab rails are till I had several falls and started putting off showering. Recently went on holiday my husband booked room for the disabled which had everything in them I found them great so as soon as I got home we changed the bathroom to a wet room and I now enjoy showering again I can even scrub my feet. So trail seems to work for me anyway. Good look.

[VJay62 in reply to Chris6255]

Thats exactly how I feel Chris. That if he would try the things that are there to help and realise what a difference they make instead of struggling. Thank you.