Hospice ? from a CALs perspective

[CoachMeg]

I have put off posting because I don't want to make too big of a deal of this. However, it is weighing heavy on my mind and I could use some perspective.

We have been accepted/enrolled/admitted to hospice. Doctor was pretty clear when he gave the referral that he was concerned with my husband's breathing and essentially his diaphragm. I agree that his breathing is my concern. (Of course there is more, but there always is, right?)

I am glad (not really the right word) that he is on hospice. The resources available to all of us are phenomenal. Almost a relief that someone will be checking on him at least once a week.

He doesn't feel the same way. I can't say that I blame him, but it has definitely added to the tension in the house. He doesn't think he is sick enough to need a nurse in the house. I am also working toward taking time off of work. Not that I want to babysit him, but I want to be with him. Holy crap....our time is running out and I just want to BE with him.

Anyway, I am rambling. The novice psychologist in me says he is in denial. All the talking in the world isn't going to change that and I can be ok with that. But what should I do? What can I do? Does any of this make any sense?
I am really struggling.

 

[cervus]

What you're saying makes sense. My advice would be, just in conversation, mention that you're not comfortable with the vast responsibility now that he's having trouble breathing and that it would give you great comfort to know he is being checked on by a professional. So really, it's not so much for him but for you, which I'm sure is also true! I think it's wonderful that you want to be with him as much as possible. You're right to do that. Take care. Yasmin

 

[trfogey]

Is he objecting to the frequency of the nurse visits or just the fact that the nurse comes to your home, rather than him being bundled up and taken out to see the nurse? Is there anyone else in the house with him when the nurse is there? Are there other hospice workers coming to the house and what are his feelings about them?

Signing up with hospice is one of those steps where the reality of "I'm really not going to beat this thing" takes center stage in your mind. He may need a little time to adjust to the "quitter" feeling before he's entirely comfortable with the "checkups".

Not saying it's a rational feeling to have, but it's pretty common, according to what my hospice folks tell me (nurse, social worker, and spiritual counselor). I know I still get little "quitter" jabs in my mind from time to time and I've been on hospice for more than a year. Happens a lot when I've had to explain ALS to a new someone in my life -- old friends who've been out of touch for a long time, for example.

 

[Katie C]

It definitly makes sense Meg. I think my suggestion would be to try to explain to him that for both your sakes you really need the help... then let it go as much as possible so that it doesn't become an item to obsess on. I got a lot of mileage out of how much easier it was not to have to head off to the doctor which was very tiring. Of course the bottom line is probably that it's something that neither of you will be 100 percent comfortable with it.. and that's ok.

 

[Mrs C]

I have requested hospice information from our physician since he prescribed it a few weeks ago. I just want someone who is a professional, and knows much more than me, to check on how I am doing. I want the greatest comfort for my love, and will do anything to make it happen, no matter how scary that step is! So, tell him it is for his own good and your peace of mind because you just love him so dang much!

 

[Georgia Peach]

We had the discussion this week with the VA Palliative care nurse about hospice. She said we could get help with pain management from hospice. Everything changes daily. Good Luck with your care and your spouse. Everyone is different and all of their ALS progression is so different. One year ago, my husband was walking and we had never heard of ALS.

 

[Danijela]

'Pain management' in our case meant prescription of morphine. My partner refused. He is not in so much pain, just some positional pain. Morphine for us will be used as end of life measure, if he decides he wants it then. D

 

[brooksea]

If his breathing is so compromised that the doctor has suggested hospice, he will most likely become uncomfortable and panicky. That was the case with my husband, anyway.

I think it is only natural to NOT want hospice if you are the patient. I had talked in depth with my husband about hospice and he had agreed it was time. I held off til after the first of the year and then he dis - agreed! I simply told him I needed help to care for him and we could do it on a "trial" basis.

Thinking of you, dear lady...

 

[KKay]

My husband has been "eligible" for Hospice for 1 1/2 years. However, initially they didnt offer more care from aides than we already had and he didnt need the other services. He was adamantly opposed to going on Hospice, more for the psychological reasons than anything. Last Fall he had few rough months where his progression started hitting on the scary things respiratory, speech and swallowing. After an evaluation last November we found out his FVC was 17% and I said "Thats it". He was still opposed to Hospice, but I went ahead with it. I do not regret moving on this when I did, I am his wife not a nurse and if he were to get a cold or flu or infection he could die very quickly. With Hospice, he wouldnt even need to leave the house (to see a doctor) to be treated with antibiotics etc. And that assistance is available 24 hours a day, not just 9 - 5pm. We have two small kids, if he were to go into the hospital I couldnt spend 24 hours a day with him taking care of his needs. We tell people simply he is receiving a higher level of care were there is more home support from aides and nurses and we dont call it Hospice. We know what it is, but who needs to talk about it? This is just a step in the journey that makes sense for his care and longevity.

 

[CoachMeg]

Thank you everyone for your kind words. Yesterday he told me he was "waffling" on hospice. Meaning he is stuck between should he or shouldn't he. I really can't blame him. I have reinforced to him that this is for all of us and not just for him.

My greatest weapon has been the illness aspect. If he gets sick we have someone available to check him out ASAP. We don't have to load up and head out to Hayward or even locally to see a doctor. I think he is starting to see it from my side, which is a blessing.

On a side note, I am feeling a little better about being at work today. My brother came over this weekend and added a riser to the base of our toilet and handles too. Now, it is much easier for Brian to transfer himself and I don't have to worry about him falling. Well, at least not as much.

Love and light
Meg

 

[CAHPAH]

Meg
It was a tough desicion for my wife as well. The ALS doctors pushed for hospice for almost a year before she finally caved and then only because her FVC was down to 18% and she weighed in at 98 pounds. Tha was 14, going on 15, months ago. Her weight is up quite a bit (I'd post it but if she every found out I'd be dead meat) and we love our hospice nurse and the added things that hospice provides are nice as well not to mention the stress is so much less having a nurse come out once a week to check on her.

Jim

 

[mysticunicorn66]

For my sister, it was a denial thing. She too seemed to think that she was not sick enough to need hospice. But as her condition deteriorated, she realized that it was taking more to care for her and she was kind of glad that we had hospice then.

 

[pmbenb83]

This has been a very informative thread. We've been wavering on starting with Hospice. I will show this information to my husband and see if he's ready. I know I'm ready for some help and a little peace of mind knowing there is someone I can call and actually get help or supplies relatively quickly.

 

[Sunnyinsd]

I started hospice care four months ago and I initiated the call. it was a hard decision but I felt "in control" making that call myself. Love my nurse and she calls every week to make sure I want/need a visit. Again, it makes me feel I have some choice and control. So important to PALs.