I just have to vent a little

[Amandagall5]

Today I have got my husband up, bathed and fed him, dressed him, cleaned his teeth. He wanted to go to the casino, so I took him. I wheeled him all around there, pushed the buttons for him. I cleaned up his poop 3 times, endlessly repositioned him in his wheelchair. When we came home I put him in the living room with the tv on and said I was going in my room for a bit and could he let me have some time to myself. That was not to be..
There was more raising and lowering of the wheelchair, cleaning his nose out, adjusting his arms and legs, removing hair from his face etc. I couldn't stand it anymore so I got angry and shouted and cried a lot. I tell him he has to let me have 15 minutes to myself, he looks at me as I say all this, then says fix my legs, again. AARGH. It's like he doesn't even hear what I say, he's just concerned about himself. It makes me so angry that he never seems to hear me or ignores what I say.
Sorry I rambled on a bit but I got really upset with him.
Amanda

 

[Green Queen]

Amanda, I'm seriously no expert at this, and sometimes I wonder if I truly belong on this forum, but you know what?
Get cross, shout, tell him off! You are first and foremost a married couple, but a couple with so much more to deal with than most.
My husband Wayne and I tend to fight less these days, but when we do it's a ripper of an argument!
A good cry, a shout, getting it out of your system is a very good thing.
Even though I have no answers for you, I'm so very grateful you've vented here, where there will be lots of wonderful help from people who get it, and care.
God bless, Janelle x

 

[lgelb]

Amanda, I've linked to a thread on how PALS lose empathy that you may want to read. Don't expect reasonable words or crying or anger to motivate him to act that much differently. In this disease, it is the caregiver who does most of the adapting; if you need breaks from time to time, you might find a responsible friend, family member, someone whom your husband is used to or can grow to like, and arranging things so this can happen. Or you may have the option of paid help.

But either way, as you know, your husband will be increasingly dependent on you as time goes by. It's not really something you can negotiate. Some people use IM, baby monitors, cell phones and/or tablets to set it up so you might go outside or to another room and he can still access you as needed. And if/as he loses speech, that will be more to the point.

If you feel that emotionally you are unable to go on as you are, you can change the circumstances, you can change your outlook [via antidepressants and/or pragmatism] or both, but don't count on changing your husband. Sorry this is downbeat, but you should know where you stand. Coming to terms w/ this disease is never easy, but I know that you will.

 

[Atsugi]

Keep ranting and rambling, if it helps.
This is a tough job.
--Mike

 

[affected]

Amanda do you have any help caring for him?

I had to learn to be really careful about how I used the time when there were staff here. If I wasn't careful he would still get me involved, or I wouldn't do things 'just for me' enough, or he would ensure the staff did very little and would be ready to demand all they should have done when he had told them with a smile all was good he needed nothing. Whew that was a long sentence! lol

I pretty much had to announce my intentions out loud whenever I left Chris's presence. If he was not aware I was just going to the loo, or to bring in the washing or whatever he would become anxious and I would get blasted when I returned. I learned lots of little strategies that helped me to get around some of the stuff. I would rather have been able to sit with my husband and discuss our needs, but your relationship does change.

If you don't have any help at all, do you think you can change this?

 

[AZmujer]

Hi Amanda: You have the hardest job of all. Believe me, I have felt like you feel a thousand times. And there have been times when my resentment leaked out and my PALS felt it. I can imagine so vividly how it must feel to be so helpless and dependent, so everything I lose it, it always comes with a big dose of guilt. I love my guy more than anything, but it's really hard not to get angry about losing your life. You need to get help. You need to find family or friends or volunteer organizations you can give you a break. It won't make it all go away, but it will give you some of that restoration time you so desperately need. Do you have an ALS Foundation in your state? Hospice organizations? Can you use your social media network (if you have one) to form a group of volunteers? I hope you can find help. And finally, know that what you're feeling is completely normal. Try not to be hard on yourself. Feeling this way doesn't make you a bad person, it makes you completely human. Sending you light...

 

[Barbie]

Hi Amanda,

don't expect your husband to understand you needs--sometimes pals have changes which takes away their ability to empathize. you crying and ranting and raving may not register with him. only his needs matter. it is a sad situation so you have to take control. I think you need a break. are you able to get a paid caregiver? even if it is just a couple of days a week or a couple of hours a day, you need help. as others have said, his needs will increase and so will your exhaustion. if you can't afford a caregiver, how about a friend or neighbor who will come and sit with him a couple hours every few days. you may also think about hospice as even if they are just coming and doing bathing it will relieve you of some stress.

you can always rant and rave here...many of us have been where you are and reading this thread there are a lot of good strategies for coping.

hugs.

 

[Janie H]

I can't imagine how difficult your job must be, vent all that you want

Janie

 

[gooseberry]

Amanda, I am not quite in the position you are but here is what I have done the 2 weekends. Nothing....no house cleaning other than necessity, groceries, and mowing. I have sat on the couch, slept, played on my tablet. Provided meals as needed. I was done and if I didn't take a break, something bad would happen. The local restaurants were happy for the business. You have to fight for some space sometimes.