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.

Fairyland

Hi Elshack,  apologies if you have already covered this, but have you seen a CELA about financing more care for him, without impoverishing yourself? If not, it may be money well spent. I am a daughter of an affected LO, not a spouse, but I’m sure that my LO’s spouse, were he still alive, nor my LO would ever have wanted to put such a tremendous burden on the other.

Pat6177

Hi Elshack, I can certainly identify with the impatience part. For me, that phrase about practicing patience is so true. Maybe with enough practice, I’ll get better at it. 

My DH’s doc put him on Remeron for sleep. It has worked well for him and he hasn’t had any light headedness. He also takes Melatonin. I don’t know if that causes balance problems but it might be worth looking it up on drugs.com to see if that’s a side effect.

Are there other hospice agencies in your area? From what others have written on this forum, a different agency might accept your DH even if one agency said he didn’t qualify. It might be worth the effort to have him evaluated by one or even two other agencies. 

Another thing to consider might be talking with your primary care doc about taking an antidepressant. For some people, this can provide relief in such a stressful and often discouraging situation. Remember, you need to put your own oxygen mask on in order to take care of others. 

Hang in there. 

Ed1937

Imodium not to be given everyday? What is the reason for this? You certainly need all the help you can get. I think you should get answers for that. Both his age and your health should be considered.

You have some good suggestions above. I think contacting another hospice should be the first thing to do, and seeing a CELA (certified elder law attorney) should be done asap. The first visit will probably be free of charge, but verify that when calling for an appointment, If it is not, call another CELA. When the first visit is over, you will understand what can be done for you, and what the cost will be. If the cost is not something you can handle, ask if he/she can suggest another way for you to get that help. Go in with a list of your concerns as listed in your post above.

Re: hearing aids - it's possible he may be to the point where his brain can't interpret what is being said, even if the sound is getting to his brain. So it could be progression, rather than a hearing aid problem. I wish you luck going forward.

MaryG123

I can commiserate, as patience is a virtue I don’t have some days.   I find that, once I calm myself, a cheery smile and an “I love you,” dispels the foul mood and he forgets that I was less than kind.  I tell myself that if he can forget my harsh words then I can too.

Crushed

Ed1937 wrote:

Imodium not to be given everyday? What is the reason for this?

Other warnings

Do not take more than the maximum daily dosage of Imodium. Also, do not take it for longer than 2 days unless directed by a doctor to do so.
 
  https://www.healthline.com/health/diarrhea/imodium#warnings

  https://www.mayoclinic.org/drugs-supplements/loperamide-oral-route/side-effects/drg-20064573?p=1

jmlarue

I am sensitive to the hardship of managing Crohn's. My eldest son has lived with this misery for 2 years and endured 5 surgeries because of it. Diarrhea and chronic pain is a daily battle. Much like Dementia, nobody seems to know how it starts or a one-size-fits-all approach to treating it. Attaining remission (however short) is a crapshoot. Frankly, I think it's irresponsible for a nurse to suggest suspending the use of Imodium without offering another mode of treatment for the diarrhea. I believe this advice is above her pay scale. I would suggest you speak directly with your DH's gastro specialist. If he doesn't have one, at least insist on a consult with an MD with knowledge of treating Crohn's. That is part and parcel of providing necessary palliative/comfort care for your DH.

Kenzie56

My DH has been on Imodium every day for a year now.  (He has permanent AFib and high blood pressure, but it has not been a problem) He also drinks two glasses of Metamucil/day and both have helped. Doctor recommended he stay on the Imodium. His stools are still loose on some days, but he can make it to the bathroom (that is if he can find the bathroom). Regarding your sleep deprivation, DH used to be up all hours of the night and nap during the day and I thought I was going to die...so I feel your pain.  His doctor also prescribed Belsomra, which is a sleep medication that helps regulate your sleep and wake cycle.  That has been a miracle.  I know every person is different and there are other health conditions to consider, but it may be worth asking his PCP. DH gets up to pee and goes back to sleep.  He is not dizzy or sedated. That was my worry as well. Good luck and do ask the doctor for feedback. I was so tired, I felt I would have given away national secrets...if I knew any!