califsand
Distinguished member
- Joined
- Sep 21, 2007
- Messages
- 237
- Diagnosis
- 01/2004
- Country
- US
- State
- ca
- City
- sant barbara
Hi, I'm the primary caregiver for my father who has ALS. He was diagnosed in 2004 and lived on his own until January of this year, when he moved in with me. I've been closest to him during his illness, as his oldest daughter he has shared the brunt of his illness with me. Although he has 4 other children (3 boys older than me and my younger sister) there are only 2 of us involved in his care. One of my brothers comes by 3 times a week and showers him. Other than that, I have a caregiver come in during the first part of the day and a cousin who helps out half day on Saturdays. The rest of the time I am alone with him.
A year ago he plotted his suicide and announced to the family he was going to do it. He had us all spend the majority of a weekend with him and then when the time came for him to follow through, he changed his mind. Said he couldn't leave all of us that way because there is so much love for him in the family. It was a headtrip, we all had finally accepted his decision and forced ourselves to be supportive of him making the choice. When he didn't follow through is when the real stress began. He finally chose to allow help, but only from me for a while. Eventually he allowed my brother to start showering him. He needed help so badly that I would go to his house every day after working full time and I would feed him, change him, do his laundry, clean up his house, tuck him in bed, etc. Then I would come home and go to bed. I wasn't eating and my husband & stepkids weren't doing their part at home. I came home to a filthy house, kids unfed (at 8pm on school nights), my dogs not fed and them all wanting my attention.
My fathers illness progressed, he could no longer swallow ANYTHING and I talked him into getting a feeding tube. He was admitted to the hospital because he was dehydrated, suffereing malnutrition and had almost no strength. The Dr. advised he had about 2 months to live. I had my husband & the kids move out, moved my father in and took family leave from work. Hospice came by regularly and over the next 3 months we were able to put over 20 pounds of weight back on my dad, his mobility increased and for the first time since being diagnosed with ALS, he had a will to live. After 3 months I returned to work and they began to harrass me, writing me up and put me on probation. They were NOT happy that my father did not die during my time off, as the Dr. had predicted. In fact, my father stabilized to a point where Hospice discharged him. Working, caring for my father, attending online school full time and the recent start up of my own company took it's toll on me, I lost my job I had been at for the past 7 years. Now I'm home, trying to get my own business going, attending school and caring for my father. Most of the time we are okay, we have a good system and I am able to understand most of what he wants. He lost his speech FIRST, before the other physical symptoms of ALS set in so we have been operating for a long time now with no speech.
Anyway, I've never looked into caregiver support before and I am only doing it now because I feel that the end is nearing. He is falling more often. He refuses to use a wheelchair in the house, a walker is the most he will do and that took a long time to get us that far. Soon, he won't be able to walk anymore and his ability to communicate may also fail around the same time. I know this and know that I can't prevent it but his refusal to allow the wheelchair use, or use of ANY OTHER device, is aggravating. I am losing patience with him and don't know how much more I can take. The middle of the night falls when he uses his bedside commode (he REFUSES to wear a diaper and will NOT leave on the condom catheter) are taking their toll on me. I am so tired in every way and it feels like his illness and attitude are ruining my life.
Any suggestions on how to keep my sanity would be helpful. Most of the time I think I am strong but I am really starting to resent him for putting me into this position. I hate to feel that way and most people have no clue but I have a feeling that others here will understand my feelings and not judge me. I think that my feelings are normal...please tell me I'm right! I would love to hear how others have coped with these feelings.
Thanks!
A year ago he plotted his suicide and announced to the family he was going to do it. He had us all spend the majority of a weekend with him and then when the time came for him to follow through, he changed his mind. Said he couldn't leave all of us that way because there is so much love for him in the family. It was a headtrip, we all had finally accepted his decision and forced ourselves to be supportive of him making the choice. When he didn't follow through is when the real stress began. He finally chose to allow help, but only from me for a while. Eventually he allowed my brother to start showering him. He needed help so badly that I would go to his house every day after working full time and I would feed him, change him, do his laundry, clean up his house, tuck him in bed, etc. Then I would come home and go to bed. I wasn't eating and my husband & stepkids weren't doing their part at home. I came home to a filthy house, kids unfed (at 8pm on school nights), my dogs not fed and them all wanting my attention.
My fathers illness progressed, he could no longer swallow ANYTHING and I talked him into getting a feeding tube. He was admitted to the hospital because he was dehydrated, suffereing malnutrition and had almost no strength. The Dr. advised he had about 2 months to live. I had my husband & the kids move out, moved my father in and took family leave from work. Hospice came by regularly and over the next 3 months we were able to put over 20 pounds of weight back on my dad, his mobility increased and for the first time since being diagnosed with ALS, he had a will to live. After 3 months I returned to work and they began to harrass me, writing me up and put me on probation. They were NOT happy that my father did not die during my time off, as the Dr. had predicted. In fact, my father stabilized to a point where Hospice discharged him. Working, caring for my father, attending online school full time and the recent start up of my own company took it's toll on me, I lost my job I had been at for the past 7 years. Now I'm home, trying to get my own business going, attending school and caring for my father. Most of the time we are okay, we have a good system and I am able to understand most of what he wants. He lost his speech FIRST, before the other physical symptoms of ALS set in so we have been operating for a long time now with no speech.
Anyway, I've never looked into caregiver support before and I am only doing it now because I feel that the end is nearing. He is falling more often. He refuses to use a wheelchair in the house, a walker is the most he will do and that took a long time to get us that far. Soon, he won't be able to walk anymore and his ability to communicate may also fail around the same time. I know this and know that I can't prevent it but his refusal to allow the wheelchair use, or use of ANY OTHER device, is aggravating. I am losing patience with him and don't know how much more I can take. The middle of the night falls when he uses his bedside commode (he REFUSES to wear a diaper and will NOT leave on the condom catheter) are taking their toll on me. I am so tired in every way and it feels like his illness and attitude are ruining my life.
Any suggestions on how to keep my sanity would be helpful. Most of the time I think I am strong but I am really starting to resent him for putting me into this position. I hate to feel that way and most people have no clue but I have a feeling that others here will understand my feelings and not judge me. I think that my feelings are normal...please tell me I'm right! I would love to hear how others have coped with these feelings.
Thanks!