Hospice

[kelly]

At our last ALS center visit (aka doom and gloom center) the word hospice was brought up. Now that my hubby's vital capacity is 40 % he qualifies for hospice. We have been resistant because my hubby is still going to pool therapy two times a week. The ALS center (which is really helpful) met with Hospice and had it approved that he can still attend his weekly pool sessions. Well, all of a sudden things are happening at rapid speed. Hospice immediately called and wanted to set up a same day meeting. I know that I should be happy that they are so responsive. Psychologically it is just a huge idea to grasp. I mean...my hubby is still living and fighting in his own way. He is still very alive to me! Andrew also still wants to remain taking rilutek..which we have a little stock piled. I know this is warped..but I feel like the vultures are circling. I guess I was wondering about other people's experience with hospice. I can tell you I never thought I would be talking to hospice about my 42 year old husband. I am ready to wake up from this bad dream!

 

[pepsiman]

I'm so sorry you're faced with this. Yes, it is a huge step to process. Our experience with hospice, while not positive at all in most aspects, was very good for a couple of things. First, we had a home health aid that came in twice a week for two hours and did a lot of caregiving that I had previously had to do. Liz got significantly better range of motion exercises (since the aid was trained in that stuff), she was also evaluated for bed/chair sores (never became a problem), and most importantly she had someone (other than me) to just talk to. She loved the aid. I have no idea what they talked about but it did her mental state a world of good to have another person to spend time with. She never got to a point though where she would allow the aid to toilet or shower her. I, or Colleen, our private nurse, did all of that but the Hospice aid was trained and willing to do it, Liz just didn't want her to.

She also got pampered in a way that I had never had time for, think weekly manicure, pedicure, skin treatments, basically anything she wanted she got (and the aid was very good about suggesting things Liz might not have thought of). There was also a massage therapist that came in once or twice a week for an hour to just do gentle massaging, foot rubs, etc. Also a very nice lady that Liz came to really look forward to visiting with.

Liz took the rilutek right up to the day she passed. Hospice didn't pay for it or supply it, but they had no problem with her taking it. My insurance covered it and would have continued to cover it for as long as she took it. Hospice supplies most of the meds, but I don't think in general they have a problem with patients taking other prescribed meds as long as there is a doctor making those decisions. Truly life extending measures like a vent may or may not be an issue, that depends on the hospice organization. Ours was very clear that they wouldn't care for a vented patient.

Hope this helps.

Dick

 

[mytwoboys]

Kelly,

We just onboarded with hospice just over a week ago - his fvc is 30 now. They have a swat-team mentality it seems. We talked with a couple of reps at the ALS clinic, and they were calling me to set up a home appt just an hour later as I was literally trying to get him into the house. A social worker and nurse came out that day. I was a little bummed - I was hoping to take a nap that afternoon - taking him to clinic is a "production" at best and it wears us out. The chaplain a couple of days later.

These first two weeks seemed pretty intense, but hopefully it will settle down. Everyone wants to jump in and help. It seems like this onslaught of help is just disrupting our routine - which disrupts itself on occassion anyway. The upside is a nurse comes out twice a week and an aide twice a week. I may be able to cut down on the self-pay aides and nurse visits we have now. The social worker is keeping in contact with him via his email on the dynavox - gives him someone else to communicate with. And... they said they would be able to arrange for some help for me when we have to go a few hours north to my sons baseball tournament in early June.

I just think it's their protocol to jump right in and get it going - their literature said they pride themselves on enrolling/intervening within 3 hours of getting the referral. It's just a barrage of sudden attention we weren't expecting.

 

[irismarie]

SO so sorry, Kelly. Can only send love and hugs to you both

 

[betty326]

this is the first time i will post on the forum.

I've experienced Hospice with my Aunt several years ago, she died of cancer. It was in 2 words, heaven sent.

My mother-in-law has ALS. She is currently in the hospital for reasons they havent figured out yet. She is on a vent has been for 3 years.
She is suffering soo much, she is being tortured.

It sounds like you and your husband are doing all the right things, maybe hospice is just the next right thing.

I wish you strength on your journey.

 

[indigosd]

Dear sweet Kellly, I know. I know. Just breathe...did you know that you can have Hospice for SIX MONTHS?! I have known several people that had Hospice come in and then after the six months-go away. It is soul much to process. Just nibble on the edges. You can still do what you do, you will just have some HELP! That is such a good thing for everyone. :] I promise that we will circle around to support you, to protect your family and lift you each up to the light of love. Just beathe and nibble dear one. I posted you and Andrew's Cause in the event thread and naturally, I am your FAN! xo

 

[kelly]

You brought a tear to my eye. Thanks for the great responses. I think it is happy hour! Check in with you all later.

 

[hopeful warrior]

Hey, Kelly~I don't mean to hijack the thread, but doesn't a virtual happy hour sound great? I do love the song,"It's Five O'Clock Somewhere."

 

[kelly]

Yes...I am for a virtual Happy Hour! Would love for this thread to be hijacked!

 

[Twinsmom]

In our Stories & Others Thread we have a FANTASTIC Forum Pub- "Friday Night Forum Pub"-which of course...is open whenever we can sneak in!
It's 5 O'Clock somewhere, right! If not here, then our friends Down Under are there!