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Parent of son with MS Lives in Fantasy World

I am a 58 year old caregiver of my 55 year old "husband" (not legally) who has lived with MS since the late 90s. I live with his elderly parents taking care of him. He's in late stage MS. The father is almost 80 and is more accepting of his son's condition. The mother is almost 75 and is delusional about his condition. Gary started rapidly declining eight months ago. His cognitive skills took a massive hit in March and slowly his walking ability has declined to where he now can't even stand with a walker. He's fallen alot since March. I lived 45 minutes away when this started happening.

The mother and father do not accept our relationship though we share matching rings. We would have married years ago, but Gary is a MEM(psychological term for mother-enmeshed men/Mama's boy) and greatly fears doing anything remotely that might upset his mother. He didn't want his parents finding out we were married and wanted to stay living with them. I told him "well what is the point then?" He said "well, we're married in our hearts honey". I know he loves me and this is as far as he can emotionally go with our relationship.

The mother does not understand that MS is a progressive illness. She thinks the reason he can't stand or walk now is due to a lack of exercise. His arms and legs have atrophed, even when he was walking with a walker.

Months ago when we would fall she wouldn't allow me nor the father to help him up saying "don't help him. let him figure it out." Of course we ignored her and helped him up. When I wasn't here and he fell she would get neighbors to help. She never dialed 911. She fears losing control over her son most of all. She can be loving towards him, but it's a very possessive love.

One time he fell and I dialed 911 and she angrily yelled in Gary's face saying "you can just lie there to your father comes home and then we're putting you to bed!!!!" Gary cries and says "just put me to bed then!"

Both parents seem angry at Gary for being ill and complain regularly of having to care for him.

They've allowed me to live here now to care for him and of course I charge nothing which they love as they are miserly. They're both POA and HCPOA. I've worked behind the scenes to get the doctor to approve home health care, but it's limited obviously.

Thanks for letting me vent.

  1. I wish there was a way to edit my post....I obviously meant in the beginning of the fourth paragraph when "he" would fall.....

    and in the fifth paragraph "lie there till".....

    1. My wife used to be my caregiver. Now, I am her caregiver as our aging bodies (64 & 69) just give out. It is ironic that I am now in better health than her, even with my MS limitations. We are lucky that my parents were very supportive of us both since I was 33. It makes a huge difference to not have to hide. The hard part is accepting the reversal in our roles. I'll get there eventually.

      1. AJjohnston, I'm so happy to hear that your parents were supportive. That role reversal from "patient" to "caregiver" can definitely be an adjustment. Caregiving is definitely challenging on top of all the challenges that come with MS. I wanted to share an article with you written by one of our contributors, Dan, who has RRMS and also cares for his wife who has SPMS about his tips for caregiving while living with MS. I hope it's helpful for you!
        -Alina, Team Member

    2. Wow, Tony, it sounds like you have a lot on your plate. It must be so frustrating to try to provide care to your husband and have to face objections from his parents. It's clear how much you love him and care for him, and I'm sorry to hear that he hasn't been doing well recently. I imagine it must be hard for his parents to watch him suffer, but complaining about him and refusing to call 911 sounds dangerous and hurtful. It sounds like you're working with his healthcare team to make sure he has additional help, and I really commend you for that! Thank you so much for sharing here. I hope you will keep us updated on how you are both doing!
      -Alina, Team Member

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