Moaning

[happygardener]

Looking for feedback..We are well into this als disease..My husband decided in the beggining he would not take any meds ..he wants this over.Although I do not agree with this i respect his wishes and have supported him..he cannot speak but is now moaning all the time..i dont even know if he knows he is doing it..At tomes he is in pain but this is not that..when i ask if he is of he just motionins(kindsa) he doesnt know,,he has no feeding tube or bi pap and there are issues with getting air..especially at night..pretty well paralysed and confied to his lazy boy..again ..his wishes..So far i havent gotten help in(his wished ) but I am so afraid..Is this a sign the end is near?

 

[Barbie]

Hi Happy gardener,

I don't know the exact answer to your question, but I would guess yes BUT...the end could still be near and be weeks or months away. I was recently involved in a ALSA phone support group for cals and one of the member' s spouse was moaning all the time. she died, but it was three months later. To me--moaning sounds like suffering--I don't know if that is true but it is how I feel. he is tired, maybe in pain, and having breathing difficulty. Not wanting life extending items like peg tube and bipap I understand, but no need to suffer with out meds or comfort.(actually peg and bibap fall in that category too). my pals doesn't want a peg or bipap and I worry alot about this so I feel for you.

I would suggest you contact hospice--just do it and don't ask tell him. it is for you as much as him. They can assess his situation and make him comfortable. if it is then end or if it is 3,6 months or even longer away, he can get comfort and you can have someone to lean on for help and support.

I care about you and wish you peace...

 

[happygardener]

thanks..thats what i thought

 

[cervus]

Hi Happy gardener,
It does sound like he's getting closer to the end especially if he's having trouble breathing. I know you've said he has always been against any kind of intervention to make his life (and yours) more comfortable. If you haven't already, call Home Care. They usually have a 24 hour number and let them know. Let your husband know too that this is getting to be too much for you and you need help and that it's too hard for you to watch him go through this. Small doses of morphine would relax him so much. So sad for you. You have done so much for your husband, mostly by yourself too. Thinking of you and wishing you peace also. Yasmin.

 

[happygardener]

We have discussed morphine and home care and he gets so mad.My doctor said she would come out to see him but he gets so agitated at the mention of any help that its not worth it to upset him...it has been so hard and Im soooo tired ,if I thought that this would go on indefinitly id get help but in my heart I know we dont have much time and I dont want things to end with him resenting me.( we have been happily married for 24 years)I have to live with my decisions as well..Even last night i questioned what he was trying to prove by taking at least some medication to make him comfortable...THIS IS NOT THE MAN i MARRIED.ALS HAS ALREADY TAKEN HIM!

 

[cervus]

Don't know what to say...I feel for you. Yasmin.

 

[happygardener]

After this...i know can take on anything!

 

[bob_s]

I am so sorry that you and your husband have to deal with this. Does your husband understand that pain meds won't prolong his life, just make him more comfortable?

I will just mention that for when communicating becomes difficult, try searching on "SpeakBook."

 

[Barbie]

Oh honey--I am so sorry!

Since he gets agitated about you getting help that does not sound like a normal loving husband. I don't think that hospice will step in without his permission, unless you go to them privately and tell them the whole story--that you think the end is almost here and he is refusing all help for you or him and that is not his normal personality. perhaps they will set it up, and have a ocial worker go and talk to him. perhaps his doctor could also intervene at the same time. if the plea is made it is for you, maybe just maybe he will relent.

If they do come in and are able to make him more comfortable and in less pain, I really don't beleive that he will resent you---especially after he gets over the initial fear of help. I really believe that he loves you and he knows you love him even if ALS is destroying him.

B

 

[happygardener]

Can hospice prescribe pain meds?i didnt think so...he hasnt been to the last 2 clinic visits...he srent over a year in denial now he is angry..has not made peace and accepted the whole thing..at this point i dont think he will

 

[momap53]

Hospice does use a variety of medications to ease pain, discomfort, anxiety, etc.
I'm so sorry he isn't allowing you to get the help you need.

 

[lakelover]

I so understand where you are coming from. My husband also refuses the Peg and BiPap and any medication. The ALS Clinic has not been very helpful in his care so I spoke with the ALSA 3 weeks ago looking for advice. I am getting less than 3 hours sleep every night and some nights none at all because he is having difficulty breathing. Throughout the night I am constantly changing the position of the hospital bed only to end up in the recliner and me on the couch. ALSA suggestion was to get Palliative Care involved and recommended a doctor in our area that is trained in handling ALS Patients. The ALSA also pointed out in my husband's file there is a section concerning the possibility of FTD being involved. The ALS Clinic never said anything to me about this. The man I am caring for is not the man I have been married to for 40 years. I realize if FTD is involved that I have to make decisions for him and know in my heart that I am doing what is best for him. My fear is when the time comes I will be watching him suffer to breathe and not be prepared for anything so his final moments are uncomfortable for him and lasting nightmares for me. The Palliative Dr. prescribed anxiety medication for him and I have been slipping it in his food. The last couple of nights I have been able to sleep about 5 hours before he wakes. I felt guilty at first thinking I was hiding things from him, something I have never done in our marriage. I now realize he needs me now more than ever and I need to make decisions for him as I would expect him to make for me if I was in the same situation. Having the Palliative Doctor available as things continue to progress allows me some level of comfort that I am doing everything I can during this very difficult time.

 

[Tofinodays]

I am so sorry that this is such a horrible disease and know the anxiety that you speak of. My husband did not wish support workers, canes, walker, ceiling lift, bi-pap, or medications for the most part. I tried to be as respectful of his wishes as possible but could not continue to function without help and could not manange MY anxiety without having the assisstive devices and later, medications ready for when he needed them. I found that within a short period of time, he started using almost all of the devices and started to ask for or agree to the medications when he was desperate. We are nearing the end of this part of the journey and he is sleeping comfortably with the help of morphine to suppress his (very weak) cough, ativan to help control anxiety around shortness of breath a nd being unable to communicate easily now that he cannot use his ipad, and the bipap which, incidentally, has been in his cupboard since last April and he finally asked for.

 

[Tofinodays]

con't

P.S. I don't know what the moaning is but my husband made a moaning sound for several months while he was able to communicate effectively and he said that it was involuntary when breathing. It was quite a distressing sound but not indicative of pain in his case.

 

[sadiemae]

My husband moans in his sleep. His breathing is OK, and I do not know the cause of it.