rhiwoman
Member
- Joined
- Feb 11, 2009
- Messages
- 11
- Reason
- Loved one DX
- Diagnosis
- 01/2008
- Country
- US
- State
- OR
- City
- Portland
My mom has advanced ALS and I have learned that things can always get worse. I am not my mom's primary caregiver, in fact I don't do that much hands on stuff with her because I have a 3-year-old and a 9-month-old. I feed her when I'm around, buy her foods and drinks she likes, take care of phone calls, just some little things. I do however have power of attorney for mom, my learning disabled father and my Grandmother (mom's mother). I handle my parents and grandma's financial affairs and oversee their medical care. I moved from out of state with my family in July to be near my parents and help them. I spend two days a week with mom doing whatever I can while caring for my two kids. Fortunately I think the kids help her a lot as well. I'm also trying to finish my degree, I'm suppose to be a fulltime student but never have much time to work.
The problem is that I feel like a candle that is burning from both ends. This summer I said to myself that I could handle this for a few months and just had to keep going. After all no one expected Mom to live until Fall so I gave it my all. Now I'm continuing to give it my all but Mom is much worse, my grandmother is having hallucinations and calling me in the middle of the night, and my three year old is possibly seriously ill and I can't let mom find out. I feel like I am not doing my part for my children or any of the three adults that I am suppose to be caring for.
A friend of mine, realizing my frustration, bought me a book for caregivers. In the section on ALS it suggests euthanasia as a good way to deal with ALS. This breaks my heart because I talked my mom out of "death with dignity" back in May. She has had so many good times since then and I have moral issues with choosing your own time. Especially knowing that mom would choose to die earlier than she wanted in order to "make life easier" for those who are caring for her. But now that Mom can only slightly turn her head, has trouble keeping her eyes open, is completely paralyzed below her shoulders and is losing her ability to speak I feel like it is my fault that she is stuck with this life in a dead body. When she stuggles to cough or slowly form words I think that she would be at peace if it weren't for me selfishly wanting her to stay around for the rest of her natural life.
I think the last straw was when we tried respite care last weekend. My dad is primary caregiver and he wanted to go away for a few days. Hospice placed her in a care facility and it was a nightmare. They didn't think to support her head when they transferred her, they tried to give her oxygen against doctors orders, they forced her to use a bedpan instead of being troubled with putting her on a toilet, they overmedicated her so that she couldn't open her eyes, skipped her shower since it was too much work too bathe a paralyzed woman, and they wouldn't listen to her when she was telling them about her needs. I stayed with her two of her three days there and felt horrible leaving her at night. The second night she called for help for 40 minutes before someone would come suction her. She can't use a call button of any sort. I had always imagined that if her care got too difficult for my family that we could find a facility where they could provide the essentials (bathing help, feeding help, transfers for toileting, etc.) and we could camp out there to keep her company. Now I see that they can't take care of her at all. Mom is not going to be able to use her current lift much longer but it took 4 people to transfer her at the care facility with the Hoyer. How on earth can we have 4 people at home at all times to care for her? It is hard enough now, we try to have 2 people there most of the time.
The last few months have showed me that just when you think you have reached an all time low things can get worse. But I am stretched to the max, constantly exhausted and feeling that I am letting everyone down. How can I keep going like this? And what is the alternative? I can't exactly tell either of my kids, my parents or my grandma to just take care of themselves. I keep praying for strength but I can feel myself unraveling. Thanks for listening, I know I shouldn't complain because I am only helping from the sidelines but I only have time to wash, feed, clothe and care for so many bodies each day.
The problem is that I feel like a candle that is burning from both ends. This summer I said to myself that I could handle this for a few months and just had to keep going. After all no one expected Mom to live until Fall so I gave it my all. Now I'm continuing to give it my all but Mom is much worse, my grandmother is having hallucinations and calling me in the middle of the night, and my three year old is possibly seriously ill and I can't let mom find out. I feel like I am not doing my part for my children or any of the three adults that I am suppose to be caring for.
A friend of mine, realizing my frustration, bought me a book for caregivers. In the section on ALS it suggests euthanasia as a good way to deal with ALS. This breaks my heart because I talked my mom out of "death with dignity" back in May. She has had so many good times since then and I have moral issues with choosing your own time. Especially knowing that mom would choose to die earlier than she wanted in order to "make life easier" for those who are caring for her. But now that Mom can only slightly turn her head, has trouble keeping her eyes open, is completely paralyzed below her shoulders and is losing her ability to speak I feel like it is my fault that she is stuck with this life in a dead body. When she stuggles to cough or slowly form words I think that she would be at peace if it weren't for me selfishly wanting her to stay around for the rest of her natural life.
I think the last straw was when we tried respite care last weekend. My dad is primary caregiver and he wanted to go away for a few days. Hospice placed her in a care facility and it was a nightmare. They didn't think to support her head when they transferred her, they tried to give her oxygen against doctors orders, they forced her to use a bedpan instead of being troubled with putting her on a toilet, they overmedicated her so that she couldn't open her eyes, skipped her shower since it was too much work too bathe a paralyzed woman, and they wouldn't listen to her when she was telling them about her needs. I stayed with her two of her three days there and felt horrible leaving her at night. The second night she called for help for 40 minutes before someone would come suction her. She can't use a call button of any sort. I had always imagined that if her care got too difficult for my family that we could find a facility where they could provide the essentials (bathing help, feeding help, transfers for toileting, etc.) and we could camp out there to keep her company. Now I see that they can't take care of her at all. Mom is not going to be able to use her current lift much longer but it took 4 people to transfer her at the care facility with the Hoyer. How on earth can we have 4 people at home at all times to care for her? It is hard enough now, we try to have 2 people there most of the time.
The last few months have showed me that just when you think you have reached an all time low things can get worse. But I am stretched to the max, constantly exhausted and feeling that I am letting everyone down. How can I keep going like this? And what is the alternative? I can't exactly tell either of my kids, my parents or my grandma to just take care of themselves. I keep praying for strength but I can feel myself unraveling. Thanks for listening, I know I shouldn't complain because I am only helping from the sidelines but I only have time to wash, feed, clothe and care for so many bodies each day.