Calling all caregivers and family!!!!!!!!!!!

For questions on how to support loved ones with MS.

Re: Calling all caregivers and family!!!!!!!!!!!

Postby Choupinette » Mon Jun 30, 2014 9:03 am

Well, my husband has PMS and has been hospitalized now for about 4 years. He lies on his back all day, alone in his room, unable to move except his left arm and hand. He is starting to have cognitive problems (hallucinations, confusions) so now after seeing his body going, I'm looking at his mind going. He has panic attacks because he is aware of it. He has only me and I visit him every day. Needless to say, my life has been focused on being a caregiver for oh, what, 15-18 years now? I could tell you all the stages I've gone through, and now it is mainly acceptance, or perhaps just fatigue? ;)

So hold on everyone, the road is long and hard, think "marathon". And the one, absolutely primordial thing to do, is to take care of yourself. Personally, I've let my health deteriorate a bit too much and now I regret it. We caregivers are always going "the extra mile", the mile that will end up hurting us badly. Just saying. And as for the abusive attitude, it is not to be tolerated in any way. If Jason nor your son don't want to see a therapist, yes, it's a good idea to go by yourself. But the situation has to improve otherwise you will lose your health and something bad will happen. As the saying goes, you have to take care of yourself in order to take care of others!

I wish you and your family the best.
Choupinette
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Re: Calling all caregivers and family!!!!!!!!!!!

Postby AuntEllie » Thu May 19, 2016 10:57 am

I have a niece with MS. She was diagnosed when she was 23.
It started out with Optic Neuritis. Once diagnosed she was put on different decease modifying drugs.
None of them helped and all of them had terrible side effects.
She had a relapse every 6 months give or take. Sometimes she couldn't see, other times she had drop-foot and tripped over herself, sometimes she had tremors, numbness, needles and pins.
She got tired fast and fell into a depression.
Some ignorant people figured that if she just pushes herself harder, she would overcome her MS. The sad truth is, there is no overcoming MS. You deal with it one day at a time, because every day can be different.
The best thing you can do is to be there for your family and help them out when they need it.
Don't treat them like an invalid & don't push them to try harder. They are a prisoner of their own body.
MS is different for everyone. In my nieces case it's a very aggressive and fast progressing type of MS.
Two weeks ago she was hospitalized because she now can no longer walk, swallow and she can barely talk anymore. She is only 28 years old. We were told that there is nothing more they can do for her other than keep her comfortable.
She's on a feeding tube. I know this is not talked about often, because when you are diagnosed with MS they tell you that MS is not fatal. I guess not in most cases. My niece is also not going to die from MS. However, she will die from complications such as infection (from the feeding tube), or from chocking (because she can't swallow), or from pneumonia (because of fluids collecting in her lungs).
What I'm trying to say is: Get your living will done if you haven't already. Encourage your family member with MS to get a living will. Their MS may never get this bad, but we didn't think my nieces MS would either.
I know that if I were in that situation I wouldn't want to live in a hospital bed with feeding tubes and no hope for recovery.
If you have MS, don't leave it up to your family to make end of life decisions for you. It may be the hardest thing you will ever have to do.
AuntEllie
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