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Active member
Oct 8, 2017
Western australia
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'm so sorry you are going through this , I had a bit of a break down. , and rant on here Friday. You have had added stress in an already stressful situation. I know it's beyond overwhelming. I have a hard time shutting my mind down at night. Bet you do too_Our husband's are sick and they won't get better , it's hard to wrap your mind around it.You must be exhausted , wish you had help with the heavy lifting.Best of luck to you.
I know, we know, exactly what you are going through. And I have much respect for you--despite that screen name "Avocado." How in the world did you come to choose that? :)

The admonition to "take care of yourself first" is so very real. But nearly impossible to do. The CALS job is so physically exhausting, physically painful, and depressing. There might be a time when you really NEED a break, but you just can't possibly get one. Although my PALS told me to take a day off at a hotel and spa, I refused to leave her side. One time, she even said I should get a date, as in, with a woman. I replied that I was a virgin when I met her, and I'll be a virgin again after she's gone. :)

I found myself sleeping in traffic, living on "5-Hour Energy" drinks, and telling advisers "You're repeating yourself. Please don't waste our time."

Fortunately, I had pain relievers and anti-depressants. I'm a planner and a list maker, so it was calming for me to make detailed plans for each week and each year ahead.

See if you can line up a nurse to take him for a morning, and go to that yoga class. You deserve it.
We haven't had a trip to the hospital yet (knock wood), but I can relate to the rest. Yes, well meaning friends have told me to take care of myself first too. I agree, nice thought, but how? I don't know how to explain to them that my time is not my own. It's not constant work, but I'm on-call pretty much 24/7. We do have an aide come in for a few hours a week, but that time is usually monopolized by errands and other to-do list items.

In the middle of typing this, DH wanted something to eat. Before I even made it to the kitchen (the next room) he added on 4 more "requests". Now I just sat down again, but the next request will probably be in a minute or two.

My shoulders, arms and back were constantly aching before we got a power Hoyer lift. We were lucky enough to get one from our local ALS Association loaner closet. Maybe call and see if you can get one? We were on a waiting list for a bit, but boy, has it made a difference.

Whoops, sorry, another interruption for help...

I also miss my before-ALS husband. Again, it's so hard to explain that statement to someone who has not been here, but please know that you are not alone.

Hugs Avocado!
I feel you! And others have already said, what I could say here. I know that once you get a little everyday rest from the recent episode you'll feel a bit better. Nothing else makes me as desperate as when I'm overtired. Good you came here to rant also.

About the smaller issue of pee breaks at night: Have you heard of or even tried urinary sheaths? Those are self-sticking condoms attached to a tube and bag that is worn on a garter around the calf. My PALS uses them when we go out for more than a couple of hours. In Germany there's hardly any handicapped bathrooms and even then it's not the easiest feat to lug him onto a toilet without a lift. (We had drama like that this week, when he didn't think it necessary to bring a urine bottle or wear one of those contraptions. My back still aches a little from struggeling to get the trousers back on again.)
As long as the bag is lower than he is, it would work in bed also. It's not too much fun though to get the thing of again, but it's pretty quick.

I've only had to readjust his legs three times while typing this, haha, but I'm not complaining. He sleeps the whole night long since the last week and getting this much rest has done wonders to both of our mood and energy levels. I know it won't last and then I'll probably be too tired to ask for help or look for solutions.

The well-meaning reminders to take time for yourself, ha! I sometimes respond: "I know the importance and I cherish the advise, but then the garbage still has to be taken out." Some people get it and offer to help with minor stuff whenever they come to visit or pay attention to cleaning up after themselves.
Big hugs. I agree with Mike, get that aide for a few hours for a yoga class or cup of coffee. It will help.
I am in constant awe of all of you who are full time caregivers for your PALS. You are amazing folks. My heart goes out to you. Much love avocado.
Avocado, first and for most huge hugs. I know exactly what you mean. I agree with Wish, try a condom catheter. They do help for nightly pee issues. He may resist, so that’s when you tell him if you don’t get rest your likely to drop him on the floor , so please try it. Also, you could always do a bed pan instead of using the lift all the time. Not the most fun, but also not as hard on you. Again, he needs to be willing to help you help him. Another of a commode chair plunked right next to the bed, then it’s one transfer bed or chair to the commode chair with the bucket in place, no need to take him to the bathroom.

And I totally get the take care of yourself comments. One thing that can help, is when some one says that, ask them when you can schedule their visit so you can plan a yoga class. Either they will offer to do exactly that, or they won’t tell you that again. Shuts them up pretty quick.

Hang in there and know I’m hugging you long distance.

Avocado, Special Hugs and thanks for posting. If each of us could only talk with our families and neighbors, we would believe we are alone with this disease. Sharing helps us all. Enjoy any time you can spend with the dogs, while they also require care, they are still a break. I recently got an active dog just to force me to do other things. She also sleeps on the bed and goes to the hardware and pet stores with me. I also get up early each morning for a full hour alone before the work begins. I wish you the very best.
Thanks, Livealot! It is so overwhelming. It sounds like you are going through so much the same as me. Good luck to you too!
Thanks, Mike!!

Ha ha - i've always had a hard time coming up with user names and screen names. I can't quite sum myself up in a single word ��. When I joined this forum I was sitting on my back deck looking out at my garden. I was struggling to come up with something to call myself and I looked around and noticed some new growth on the pretty little avocado tree I planted a couple of years ago. So... Avocado. Sorry - not much of a story, I'm afraid. You can call me Tara if you prefer. ��

Yes, I am definitely planning on a yoga class or maybe a massage as soon as I can swing it. We have a friend who happens to be a carer, and he now comes for a shift with my PALS once every two or three weeks so I get a few hours off. When that started I used to use that time to go and catch up on errands and try to get things done. But the last couple of times I have used that time to do something for myself instead. i am learning.
Avocado, boy do I get it...

OK, here's a thought. Forget hoisting him to the toilet every time he feels an urge. Roll him on his left side (right side up). Have a chux under him. Put a bedpan next to his bum (a curved one or the low profile spinal ones work best) and let him fill it. No pan, no problem--just go on the pad and change it when he's done. Wipe him, turn him back over, and relax until the next time.

You can administer an enema the same way.

He won't like it at first, but it's easier on both of you, especially when time is an issue.

I'm afraid our hands will never be the same....

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