Frustrated with PALs learning he's not in control, I am.

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Tracy500

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I'm finally able to log on again. Was having trouble but now I can. Anyway my hubby has to use the bedpan now to. He gets mad, but I cannot physically lift him anymore. He is too week. Legs collapse and I have been injured myself yesterday trying to lift him. I said no more, for safety he needs to use bedpan. But he needed to go again tonight and was mad, wanted toilet. I said no, bedpan.,so after awhile I hoyered him into bed, he literally kicked me 4 times refusing to go to bed. I said I will put the tv on, and if you need bed pan you are set for it. Anyway it's almost time for pills and Ned anyway. Help please he kept kicking me and said **** you like 3 times. For someone who can't barely speak at all, he sure can stil, swear perfectly. He also has a foley catch in so moving him to toilet was also a problem with that being careful not having it pulled out. And no to anyone who asks if I get help, the answer is no, we only have hospice RN come 1 time a week for supplies and vitals. I. So sick of this disease and being treated this way.
 

Atsugi

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Is there any way to minimize the conflict between you two?

Do you still have a marriage relationship?

I'm so sorry to see this misery. Nobody should have to put up with this.
 

Tracy500

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CALS
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06/2014
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No marriage relationship anymore. It's just me taking care of him the best that I can. I've been sick for a few days too, wear masks anytime I'm around him to make sure. Sanitize house and all.
 

scaredwifetx

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Tracy, I am so sorry that you are having to be the only one taking care of him. Its very hard when you are sick. Can you contact his the hospice administrator and tell them you need help more than once a week. Have you tried your local ALS Association? Maybe others can chime in and give you ideas. You need a break. You need to take care of yourself.

I am not sure how he treated you before his diagnosis but it sounds like he is lashing out in anger. It is very hard to be a CALS because all their frustration and anger is taken out on the person closest to them. Losing the ability to use the bathroom is a very hard blow emotionally. That does not excuse his behavior with you. I don't know if he previously mistreated you but if not he could be having issues with FTD.

I wish I could offer more support and answers.
 

Nuts

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Tracy, was your husband mean before ALS?

What a terrible situation for your family. Please contact your hospice and tell them you need more help. what do they say when you describe what is going on?

Becky
 

Narrowminded

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Tracy, not sure this will work, but you mentioned a hoyer, do you have a potty sling with a hole in it? Maybe you could get a potty chair placed right next to the bed, then you could use the hoyer to lift him from bed to chair and he could still be sitting up to go. Not sure he'd like the idea, but it may suit him better than the bedpan and relieve a bit of stress.

When DH first got to that point we would put the potty chair next to the bed and use a slide board to get him across to the chair and then back to the bed same way. That only requires some stabilization from you, not lifting. My DH is 6'2, and I'm only 5'1 I could have never lifted him, my shoulder never even reached his arm pit to be a crutch.

Hope this helps, Hugs,

Sue
 

soonerwife

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I'm glad you can log in again Tracy! I have been thinking of you.

Sorry this is so hard. I wish I had some advice. All I can offer are hugs and let you know we are glad you are back and we are here for you.
 

ehd42

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Sep 21, 2016
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Reason
PALS
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Bala Cynwyd
Hi Tracy500

You are clearly doing your best, but the demands being made on you plus your husband’s behavior are making a difficult situation much worse.
I imagine that your husband is very angry and frustrated because of his dependence and inability to take care of his simplest needs. The use of the bedpan apparently is a big issue for him and everything should be done to find an alternative in such a case. Clearly you shouldn’t be trying to lift him. Sue mentions using your Hoyer and I couldn’t more. You can fit it with either a universal sling or toilet sling, to either transfer him to a bedside commode as has been suggested, or better yet use an over the toilet commode/shower wheelchair if possible. Finally, it would appear that your husband needs counseling and probably psychotropic medication to help him deal with his anger and stress. Perhaps your clinic’s social worker can counsel you how to better deal with this difficult situation.

Best wishes

Eliot
 
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