dreading each day

Elshack

My situation is not as bad as many others but I feel very dejected about life in general. My DH sleeps on and off most of the day and after I put him to bed around 11 pm he is up several times during the night attempting to make coffee and eat his breakfast roll. I hate to put him on a sleep med because I worry this would affect his balance when he gets up at night to use the bathroom.

Hospice evaulated him and he is at 6.5 and they give pallative care when a person is at 7. His explosive diarrhea due to Crohn's was under control when I gave him Imodium everyday but the nurse said I shouldn't continue giving it to him everyday.

DH is 92 and I find I am not as patient as I should be with him. The latest is I paid $1800.00 for a new hearing aid in March and he can't hear out of it even though I took it back to the hearing aid person 2 x. Everything just seems very depressing to me. Of course I will feel very sad when DH dies but on the other hand I don't know how much longer I can do this. We are in independent living and couldn't afford AL for him. Some days are better than others. Yesterday he played cards with me and some computer games but today he got up at 2:30 in the afternoon as I had to convince him to get out of bed. Right now it is 1 am and he has gotten up 2 x saying he wants coffee. 

I guess I just need some commiseration as I know there is no answer. The nurse suggested day care which wouldn't work as he does not like to be around other people and right now can not hear anything as the other hearing aid is being repaired and the new one isn't working. I am 82 and feel guilty when I am showing anger. The only positive part is he can't hear right now and he has no short term memory. He had brain surgery almost 4 yrs ago and had mild dementia for 3 yrs prior to his surgery. Thanks for reading.

M1

Elshack I certainly commiserate, but one specific comment: give him the Immodium. For goodness sake, that nurse doesn't know what she's talking about. It's not going to hurt him..

Elshack

I appreciate you answering as I believe you are an MD, correct? I spent weeks cleaning up explosive diarrhea attacks in the bathroom which filled 2 Depends and leaked on to his clothing and I had to put him in the shower and throroughly clean the bathroom every day.

abc123

Hi Elshack, I can surely understand where you are coming from! I’d give him the Imodium too! What harm could it cause? Explosive diarrhea isn’t good for either one of you.

M1

Yep.  And abc is exactly right.  Maybe if the nurse had thought a little more, she would have come to the same conclusion.  But it's absolutely not going to hurt him and will make life easier for both of you.  You could always check with his gastroenterologist, but this is a very practical issue.  It's probably what the gastroenterologist would tell you to use!!

I am so sorry that life is so hard.  Wish there were a way for you to have more help.  Maybe try a different hospice agency?  We've seen that before--you don't have much to lose to get another assessment.

Olly_Bake

I don’t know anything about Crohn’s disease. Let me say that first.

However, it would be hard on me as well to handle what I think I'm reading constant explosive diarrhea. Was ready to run out in the street and get hit by a bus when dad had CDiff. He didn’t have the smell part of it thankfully. 

Through research, I learned of a probiotic called Florastor. It absolutely didn’t stop the diarrhea but it did firm it up (not hard - like a soft ball looking pile) just enough to make things easier on both of us. Not sure if this would work because probiotics can cause just what you are trying to avoid. And I'm not sure if probiotics are a no no for Crohn's disease.

With that being said, your hospice nurse absolutely is not walking in your shoes or the shoes of your husband. So probe them for what they would consider a better alternative. As far as the sleep thing, I’m there with you seeing dad not resting much at night since the removal of a low dose of lorazepam and escitalopram.

Please come back and give us an update if you have not already.

Djuneo

Please dont be hard on yourself... remember your doing the best you can!