lisamk
New member
- Joined
- May 2, 2008
- Messages
- 8
- Reason
- Loved one DX
- Diagnosis
- 08/1998
- Country
- US
- State
- PA
- City
- Pittsburgh
Hi, I am new to this board and I am desperately searching for some advice as to how to help my mother. My father was diagnosed with ALS in 1998. My mother is his caregiver and it is getting to a point where it is is physically and emotionally taking it's toll on her to the point where I am worried she could have a nervous breakdown. He is now in a wheelchair permanently, can no longer to lift his arms so he must be fed by someone, bathed and assisted with bathroom, along with all of the other aspects that go along with caregiving.
I live less than a mile from her and we see them if not daily, then every other day. My father has a power wheelchair so when the weather is nice, he can drive up to my house. He can be left alone for a few house after he is fed and gone to the bathroom because he can't do anything but sit in the chair. He doesn't mind and I think he likes some alone time so my mother is able to go out to an evening BINGO a few nights a week to get a break. She can even go shopping and leave him so I am no help from that aspect. She recently had a little breakdown and her doctor told her the family has to start helping more. The problem is that none of us, including my mother know what we can do to help her. We are all willing and able to make any necessary sacrafices, but I just am at a loss here. What I think is going on is that she is getting burned out with the day to day tasks of caregiving. It's such a horrible disease and it's so frustrating to do so much for someone day in and day out and know that they are not going to get better. That fact, coupled with the fear of what is to come is very scary. We know that it is just going to get worse. She is not going to be able to care for him much longer, but he refuses to talk about the next steps. I know shy lays awake worrying about everything. My husband and I and my brother are willing to do whatever we can. I would love to send her away for a day or even a weekend, but we have a problem with the bathing and bathroom part of the caregiving. I would do it if I had to, although I think the embarassment for him would probably kill him. I try to feed him meals when we are there for dinner to give her a break. Aside from cooking dinners and keeping them busy with his grandkids (I have 3 year old twins and a 2 year old), I just don't know what I can do to relieve her. I know that they have respite care, but my father is not very receptive to the idea. They have always had a very good marriage, but the past several years, he has been downright abusive to her. I know it is out of frustration and I can't even imagine what he is going through. He can't even scratch an itch if he needs to! This disease infuriates me.
It's taking it's toll on her. It seems like when we focus on taking care of my mother, he gets irritated and any disruption in the harmony really sends her off the deep end. She just can't handle any kind of stress anymore. It's almost as if my father doesn't really understand all of the demands this disease has placed on her or maybe he doesn't want to admit how bad he is at this point. I don't want to talk badly about him or make him seem like a bad person in any way. I grew up in a very loving household but this disease has really brought out the worst in him. She is now in charge of every responsibility that goes along with running a household, being a grandparent AND a caregiver and he is constantly placing new demands on her and watching her every move. We have all tried to get him out more often and get him involved in various activities, but he is not interested in doing anything without my mother, which doesn't give her any relief. I am very worried about her. Any suggestions would be greatly appreciated.
What I really want to know is what would help YOU as a caregiver. If you could just start delegating responsibility or make a wish list, what would it be? With mother's day and her birthday fast approaching, I really want to do something special for her. Not even just those particular days, I want to know what I can do to relieve some of the stress.
I live less than a mile from her and we see them if not daily, then every other day. My father has a power wheelchair so when the weather is nice, he can drive up to my house. He can be left alone for a few house after he is fed and gone to the bathroom because he can't do anything but sit in the chair. He doesn't mind and I think he likes some alone time so my mother is able to go out to an evening BINGO a few nights a week to get a break. She can even go shopping and leave him so I am no help from that aspect. She recently had a little breakdown and her doctor told her the family has to start helping more. The problem is that none of us, including my mother know what we can do to help her. We are all willing and able to make any necessary sacrafices, but I just am at a loss here. What I think is going on is that she is getting burned out with the day to day tasks of caregiving. It's such a horrible disease and it's so frustrating to do so much for someone day in and day out and know that they are not going to get better. That fact, coupled with the fear of what is to come is very scary. We know that it is just going to get worse. She is not going to be able to care for him much longer, but he refuses to talk about the next steps. I know shy lays awake worrying about everything. My husband and I and my brother are willing to do whatever we can. I would love to send her away for a day or even a weekend, but we have a problem with the bathing and bathroom part of the caregiving. I would do it if I had to, although I think the embarassment for him would probably kill him. I try to feed him meals when we are there for dinner to give her a break. Aside from cooking dinners and keeping them busy with his grandkids (I have 3 year old twins and a 2 year old), I just don't know what I can do to relieve her. I know that they have respite care, but my father is not very receptive to the idea. They have always had a very good marriage, but the past several years, he has been downright abusive to her. I know it is out of frustration and I can't even imagine what he is going through. He can't even scratch an itch if he needs to! This disease infuriates me.
It's taking it's toll on her. It seems like when we focus on taking care of my mother, he gets irritated and any disruption in the harmony really sends her off the deep end. She just can't handle any kind of stress anymore. It's almost as if my father doesn't really understand all of the demands this disease has placed on her or maybe he doesn't want to admit how bad he is at this point. I don't want to talk badly about him or make him seem like a bad person in any way. I grew up in a very loving household but this disease has really brought out the worst in him. She is now in charge of every responsibility that goes along with running a household, being a grandparent AND a caregiver and he is constantly placing new demands on her and watching her every move. We have all tried to get him out more often and get him involved in various activities, but he is not interested in doing anything without my mother, which doesn't give her any relief. I am very worried about her. Any suggestions would be greatly appreciated.
What I really want to know is what would help YOU as a caregiver. If you could just start delegating responsibility or make a wish list, what would it be? With mother's day and her birthday fast approaching, I really want to do something special for her. Not even just those particular days, I want to know what I can do to relieve some of the stress.
