need help being a caregiver

5 min read

I recently got married and my mother in law has MS. My husband got locked up when he was 18 because he was illegally trying to provide for his mother and younger brother because as soon as his father find out his wife had MS he cheated on her and left. My husband served 12 years and when he got out in September we reconnected and got married. We didn't live near his mother and no one ever acted like her MS was a very big issue. So I never questioned it. Me and my husband started to struggle a little and moved in with his mother. A few days after we moved in he got arrested for not reporting his move to his PO. So unfortunately he has been locked up for over a month and we have very little communication.

I am still living with his mother and really need help caring for her. I have no one to ask and she refuses to ask me for help or anything. I had a date with her tonight and freaked out so now I'm trying to get as much info as I can. She's in a wheelchair but she can do basically everything herself. Because before I moved in she was living alone. She does have a CNA that comes in for an hour Monday through Friday to help her shower and stuff but I'm never here to watch or ask questions. She can stand on her own for short periods of time. So I've never had to help her shower or use the restroom or get in bed or anything. Tonight I heard her machine beeping. It's a mask she keeps on her face. So I know it's some sort of breathing machine. It was helping for the first time since I've lived here. I could hear her breathing but still woke her up to make sure everything was ok. I scared her half to death though tapping on her to wake her up. I felt awful. Her dog usually barks but he's so use to me he didn't do me actually tapping her scared her so bad which in turn scared me because she was shaking so bad she looked like she was having a seizure.

Anyways though I just wanted some advice on what to do and not do and what to expect. I know MS is different and varies from person to person and day to day. Like I said though she doesn't like asking people for help and I guess just doesn't want to feel like she's a bother to me and doesn't want people to feel sorry for her and do things for her out of pity I guess. So I do the usual and obvious things around the house and stuff that I should but I would like to help more if possible and know anything that could be useful. Like I know she falls quite a bit and sometimes needs help moving from her chair to the car. I've never been here when she's fell and she has only needed help with moving once and I did what she told me to but it still want anything. But she is much bigger than me. Standing she's well over 6 foot and she's what I would say is a typical weight for a woman in her fifties. Not skinny but not fat. I'm much smaller though like 5'3" 160lbs. I know I could no way pick her up if she were to fall with me here but in the event she needs assistance where and how is the best place to grab her and help her? And what should I expect and do in any other situations?

Like I said she is wheelchair bound. She only gets out of it to get in and out of bed, the shower, to use the bathroom (1-3 times a day because she does wear pull-UPS, and moving from her electric chair to the car and out of the car into her manual. I've taken her to a few places and my car is not wheelchair accessible so we have to bring her manual. But she's never really needed my help. I pull the chair up to the car and hold on to the door. She pulls on the door pulls herself up slightly turns and falls back into the chair basically. I know she can't really feel her legs and never knows when they will just give out on her. I also know that the more she does in a day the more weak she gets and is more prone to falling. The heat also wears her out and makes her weak. She's told me she has choking problems that's why she only eats certain foods. She doesn't eat much though and usually complains of stomach pain when she does eat. She has to sleep with some kind of breathing machine mask at night. And her memory isn't very good. She remembers stuff from her past and childhood and most everything that's important. The little random things is usually the only things she's not good with. Like sometimes she will tell me stuff she's told me before or will tell me something that I told her thinking someone else told her. Things like that. Her legs swell sometimes and she sleeps with them propped up and will sometimes have the CNA wrap it in an ace bandage. But I'm not even sure why she gets it wrapped in an ace bandage not how to do it.

So I'm just asking for help or advice from anyone who's loved ones are at this stage or passed it. Any information or advice or what to expect or what to do to help, what not to do, what could happen and what to do of it does. ANYTHING please! I have no idea what I'm doing and she's stubborn and won't ask for any help unless she really needs it. Plus I'm sure she doesn't want to even try to ask me for anything because she knows I have no idea about any of it. But I really want to know as much as possible and plan on getting more involved and asking more questions and learning and along her doctor and things like that if she will allow me. Not to mention I'm a very quiet passive person. And I don't show anyone my feelings and I'm not affectionate in the least bit. I usually show my care and appreciation by doing little things or getting little things that are usually useless or meaningless to people but to a specific person mean a lot. Like cleaning or getting someone a plant or something of that matter. So that makes this all a little more difficult. I don't want her to think I'm ever doing anything for her out of pity not do I ever want her to think that she's any sort of a bother or hassle for me either. So I really just need all around help being new to helping be a caregiver to her. So please ANY feedback encouragement and/or help would be greatly appreciated.

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Donna Steigleder Moderator
Welcome Becca to the world of caregiving. Sounds like you have jumped in with both feet. You've asked a lot of questions and many of the answers are pretty lengthy. I want to give you answers but I can't tonight because I have to get ready to care for my spouse. He's in a wheelchair and can't do anything for himself at all so most of the situations you describe, I'm very familiar with. Until I can get back with you, check out the various posts I've done under the "Community" tab. click on MS Expert and look for Donna Steigleder. I promise I'll get back to you but wanted to give you a place to look until I could return. Hang in there.
Donna Steigleder Moderator
I'll probably have to answer you in stages but first thing you need to know is to let her tell you what works for her and what doesn't. She doesn't want to want your help even though she needs it so it will take time for her to allow you to do for her. It sounds like she will want to do as much for herself as possible so stand by and let her try until she is too tired to do it herself. Sometimes just moving a chair closer to her or parking the car on the grass closer to the house or to an office so the distance is closer can help. It might help her if she had a walker or rollator to use for places where her wheelchair won't go. They are smaller and offer support; especially a rollator because it has a seat that would allow her to rest if she needed it. I used one like a wheelchair for my husband for a long time before he would consider using an actual wheelchair. If you are going to help move her, make sure you have a gait belt to put around her chest. You can use a regular belt if it will wrap around her chest or a long strong scarf if you can't get a belt but you need something that is stable to hold onto other than her body. Her body will shift on you and make it difficult for you to hold on to her. so if you have to help move her, put the belt around her, wrap your arms around her and hold onto the belt in the back, then count to 3 with a rocking motion so she knows when you are going to lift and she can help with the momentum of the "rocking" and you can lift together. If you are transferring her to a chair, pivot on your foot and use your knees to guide the movement. I put my knees on the outside of his knees so that his knees are trapped by mine. Then as I lift I use my legs to lift at the knees, grab onto the belt holding him close and shuffle him as we step together to the chair. I make sure the back of his knees are against the chair and then I lower him using the belt. That's the safest way to transfer and move someone if you don't own a lift. Use your knees and thighs to do the heavy lifting and the belt to support the move. Hope that helps. I'll try to do more tomorrow.
ms_n3pp8k Member
Hi! As a person with MS who is very stubborn, my husband will understand your dilema. Call your local non-emergency number for the fire department & ask them if you can call 911 for a 'lift assist'? Most emergency squads will come out to lift someone without transporting them to a hospital...they are trained on how to lift someone properly who has fallen. I hope this has helped to ease your frustrations a little-but keep plugging on & just listen to her, she will get used to your wanting to help and respect you for waiting till she's ready for that help.