Avocado
Active member
- Joined
- Oct 8, 2017
- Messages
- 44
- Reason
- CALS
- Diagnosis
- 02/2017
- Country
- AUS
- State
- Western australia
- City
- Perth
It's been a rough couple of days and I am really struggling. I need to vent a bit, and I feel like this is the only place where anyone will actually understand.
I had to call an ambulance to take my PALS to hospital on Friday night. He's been constipated on and off for a couple of weeks and we were trying to deal with it gently with prune juice at the advice of our community nurse, but apparently it wasn't doing the trick. His bowels became impacted. He was in tremendous pain, and he insisted I call.
Last September he had an episode of acute pain one night and he asked me (well, screamed at me) to get an ambulance to take him the hospital. At that point he was using a walker. After the hospital night he started using an electric chair. I have to admit I resisted calling on Friday night. From our previous experience and from what I have read here I feel like going to the hospital can result in step-changes for PALS. I was terrified to think what he might lose this time, as he's not got that much left now.
I sent him off with the paramedics, and went and loaded his electric wheelchair into the van, got his stuff together, locked the dog and the puppy in my bedroom (another thing to worry about since I never leave them in the house alone, but never leave them outside at night either), and headed to the hospital. They kept him over night and managed to get things moving. There was nothing I could do there and he was in very good hands, so I went home around 3am and then went back around 7:30, but I spent more of the night driving than sleeping.
Since then he has had the feeling that he has to go quite frequently, and this weekend has been an endless cycle of wrestling him into the sling, hoisting him onto the commode, wheeling him into the bathroom, washing him off, wheeling him back, hoisting him onto the bed, drying and dressing him, hoisting him back onto his chair...and repeat...and repeat. It's like Groundhog Day.
I am so sore from all of it. I can manage a normal day of hoisting- getting him up, toileting, showering, one or two naps and then putting him to bed. It's difficult. He's quite a bit bigger than I am, but I can manage and I'm used to it. But after this weekend, I feel like I am falling apart. My whole body hurts. My arms, back, neck, knees and chest are sore and I have injured my shoulder. My hands are stiff. I caught one of my fingernails on the sling and tore it right down to the quick, and it hurts too. I'm crazy tired, but I'm lying here awake after his 3AM pee break and I can't get back to sleep. There are too many things to organize and deal with in the coming week, and these and the pain in my shoulder are keeping me awake.
People always tell me I have to take care of myself. That, I can't take care of him if I don't take care of myself. It's so frustrating. It's a nice idea and totally unrealistic. It's like this throw away comment people make without even thinking about he practical implications. How is that even possible? Sure, I would love to go to a yoga class, see a long lost friend for coffee, go for a massage or Physio. Even just sleeping through the night would be a luxury. But it's all I can do to get out of the house to get groceries and walk the dogs. None of my family is here and we have well meaning friends but none live very nearby, and they have families, jobs and their own lives. And anyways, it's not like i could ask them to help with showering or toileting, or to take pee watch so i can sleep through the night. So it's just us and I am really lonely. I miss my husband. I miss when he could speak and we could have real conversations and we talked about things other than his bowel movements or getting his affairs in order. I miss his laugh and his hugs and having him in bed with me at night. I let the dogs sleep on my bed now, which Is something I never thought I would do, but it's better than being alone.
I hate this stupid disease.
I had to call an ambulance to take my PALS to hospital on Friday night. He's been constipated on and off for a couple of weeks and we were trying to deal with it gently with prune juice at the advice of our community nurse, but apparently it wasn't doing the trick. His bowels became impacted. He was in tremendous pain, and he insisted I call.
Last September he had an episode of acute pain one night and he asked me (well, screamed at me) to get an ambulance to take him the hospital. At that point he was using a walker. After the hospital night he started using an electric chair. I have to admit I resisted calling on Friday night. From our previous experience and from what I have read here I feel like going to the hospital can result in step-changes for PALS. I was terrified to think what he might lose this time, as he's not got that much left now.
I sent him off with the paramedics, and went and loaded his electric wheelchair into the van, got his stuff together, locked the dog and the puppy in my bedroom (another thing to worry about since I never leave them in the house alone, but never leave them outside at night either), and headed to the hospital. They kept him over night and managed to get things moving. There was nothing I could do there and he was in very good hands, so I went home around 3am and then went back around 7:30, but I spent more of the night driving than sleeping.
Since then he has had the feeling that he has to go quite frequently, and this weekend has been an endless cycle of wrestling him into the sling, hoisting him onto the commode, wheeling him into the bathroom, washing him off, wheeling him back, hoisting him onto the bed, drying and dressing him, hoisting him back onto his chair...and repeat...and repeat. It's like Groundhog Day.
I am so sore from all of it. I can manage a normal day of hoisting- getting him up, toileting, showering, one or two naps and then putting him to bed. It's difficult. He's quite a bit bigger than I am, but I can manage and I'm used to it. But after this weekend, I feel like I am falling apart. My whole body hurts. My arms, back, neck, knees and chest are sore and I have injured my shoulder. My hands are stiff. I caught one of my fingernails on the sling and tore it right down to the quick, and it hurts too. I'm crazy tired, but I'm lying here awake after his 3AM pee break and I can't get back to sleep. There are too many things to organize and deal with in the coming week, and these and the pain in my shoulder are keeping me awake.
People always tell me I have to take care of myself. That, I can't take care of him if I don't take care of myself. It's so frustrating. It's a nice idea and totally unrealistic. It's like this throw away comment people make without even thinking about he practical implications. How is that even possible? Sure, I would love to go to a yoga class, see a long lost friend for coffee, go for a massage or Physio. Even just sleeping through the night would be a luxury. But it's all I can do to get out of the house to get groceries and walk the dogs. None of my family is here and we have well meaning friends but none live very nearby, and they have families, jobs and their own lives. And anyways, it's not like i could ask them to help with showering or toileting, or to take pee watch so i can sleep through the night. So it's just us and I am really lonely. I miss my husband. I miss when he could speak and we could have real conversations and we talked about things other than his bowel movements or getting his affairs in order. I miss his laugh and his hugs and having him in bed with me at night. I let the dogs sleep on my bed now, which Is something I never thought I would do, but it's better than being alone.
I hate this stupid disease.