Caring for my mum

[carolinetw]

Hello all, I'm a newbie to this page and hoping to find help as I am caring for my mum at home. She has myasthenia gravis - an autoimmune degenerative illness which causes her muscles to weaken and eventually fail. She has it across her mouth, ears, nose, throat, and lungs and results in her struggling to breathe, and with semi permanent earache and blocked nose.

I also believe she has the start of dementia because she constantly thinks someone is stealing from her, and then putting things back. It was so bad I had to change the locks in her house to prove that no one could get in anymore. She still thinks they do. To say she could be very cruel in her comments and anger is an understatement. There were a lot of very unkind things which were said.

The big problem I have though is that she has made the decision to stop taking her auto immune suppressants which is the long term medication to control the MG.

The auto immune suppressants take up to six months to work and she took herself off them after a month convinced they were doing her harm and the doctor was terrible and trying to kill her.

She's self dosing on steroids which are meant to be managing the MG whilst before the auto immune suppressants work - i.e. she is meant to be on 30 mg a day and she takes them at different dosages, or not at all. The steroids have given her very high blood pressure which has caused tinnitus - so she has pills to lower her blood pressure.

When we ask her / beg her to take the auto immune suppressants, she is adamant she is not going to do it and she gets very angry which causes her blood pressure to rise and thus we go in the loop. The stress causes her MG and blood pressure to go up, she can't breathe and it's terrifying to watch her gasping for breath and the ringing comes back in her ears.

Recently we had a breakthrough and are getting on better with each other, no more hurtful words. But still she is all over the place with her medication and not listening to us and refusing to see the neurologist or indeed doctors generally because she thinks they are all useless and the pharmaceutical industry is only there to make profits.

She lives with my husband and I as she can't live on her own because of all the reasons above. We don't get any other help and she refuses to go to Age UK events etc because she thinks they are all too old for her. Not realising she is now one of the older people there.

How can I get her to listen to us about the medication? To stop the self medicating and to get back onto the auto immune suppressants.

[jaykay777]

Maybe you can repackage the prescription medications in bottles labeled vitamins so she will accept them. I know it's not good to repackage medications, but it may be the only way she will let you do what's best for her. This is a good time to start planning to place her in a care facility because soon caring for her will be too stressful for you and your husband. If that happens you may start developing physical illnesses caused in part by stress. It happened to me.

[Sarah_S]

Wow that's so tough for you, it's so difficult to help someone who doesn't want to be helped. My mother-in-law has also got really suspicious about her money and house keys, mistrusts doctors and has said some really cruel things, but I just have to remind myself it's part of the dementia and not really her. She also thinks she is not old enough to go to groups for older people - I think she would benefit so much from getting out and socialising, but I can't force her to do it. There is a Cosy Club near me who do free tea for over 65s every Wednesday morning, and I think that might be a good start, as I'd be going with her and saying we're just going for a drink, not a forced group of old people like an Age UK lunch club, but a chance where she might meet some people that she could continue to socialise with. cosyclub.co.uk/cosy-treats/. I'll let you know if I try it!

She got confused with her tablets (although she wasn't refusing them), so we got her an automated pill dispenser. This has worked really well. She has no idea what the pills she takes are for now since her dementia has progressed, but she just takes the ones that are there when the alarm goes off. I don't know whether this would work for your mum if she is still aware of what each of her pills is for and what they look like?

Do you have power of attorney? It's definitely worth considering at the first signs of dementia (or as early as possible really), so you are able to help with decisions for her in the future.

[Hidden]

Hello there. Caring for a loved one in this way is one of the most challenging, and, at times, least rewarding and unappreciated things that you will ever be called upon to do, and it's really a great thing to be inside this forum to help you realize how many people are quietly caring for someone, in the way that you are for your mum. The only eventual reward really is that you did what could and should have done for her, but that feeling only comes much further down the line, and brings sorrow with it too, because it's generally when you've lost the person who has caused you so much of a challenge.

The first thing that springs to mind on reading your post is that your mum appears, from what you've said, to be suffering from dementia, and you should be looking to get a professional diagnosis. And reach out now to dedicated dementia support groups and organizations who can help more specifically with problems like non-compliance with drug routines.

And why, for instance, when she is living with you, does she have access to non-prescribed steroids? Maybe the time has come to take total control of your mum's medications. It's helpful when trying to do this to use one of the pharmacies which will dispense her medications ready counted out for her, so that she cannot identify one drug from another. Or to do that yourself.

With regard to other situations which descend into a battle, sort out in your mind what is 100% essential for her ongoing health, and what is not really going to affect her eventual outcome. You will be less stressed, the less you have to fight with her. If she has it in her mind that Age UK isn't the place for her, that should be her decision. She may be in denial about being old, but that's her prerogative and you don't have to worry about it. It might be that she would actually like some activities if willing to try them, but it won't help her to be coerced into taking part in them.

Unfortunately some battles are unavoidable, and when I helped to care for my own sister who had a dementia with paranoia, they continued until the day of her death. It's tiring and frustrating, but is much easier if you do accept what is a necessary battle and what can be let go.

I always found the AA prayer of enormous help:

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

And if you aren't of any religious persuasion, take out the God. It still works!

Also, this, based on a verse of a well known hymn:

When some great sorrow, like a mighty river,

Flows through your life with peace-destroying power.

And dearest things are swept from sight forever,

Say to yourself each trying hour:

This, too, will pass away.

Or, put more simply, 'This too, will pass'

Just always keep in mind that you are doing all that you can. It might not be perfect and it may not always work out the way you hoped, but you are there and doing the best you can manage.