Hospice or Not?

[lgelb]

I guess I'm confused re frequent "breathing emergencies" if all is well w/ BiPAP/RT? That is part of what I thought you might be wanting to address with more support.

Completely agree, no more people around than needed. But if the current team is not keeping her as comfortable/active as possible, and you are stretched to your limit, then I would think you would be looking for something to change. It doesn't have to be hospice enrollment, of course.

 

[poppies]

Hi there. It sounds like you are doing so well. I am in a different country (South Africa so very different!? but thought I would comment on our experience with Hospice as it has been a very positive one. My husband does not like visitors of any kind, even family and friends, as he cannot talk and does not like to be fed in front of people. I contacted Hospice though because they offer such a holistic service and I needed to know I had someone knowledgable to turn to for support as and when we need it. They were wonderful. They offer counselling for the whole family and even friends if needs be. They have an array of equipment for loan. The sister that visits is so sweet with my husband. He can't help but smile when she is here, even though afterwards he says she is hard work! ;-) We were able to choose the frequency of visits so she only visits once every three weeks. We can also call 24/7 and they have a doctor who writes up scripts for free when needed. We are managing fine at home but it makes me feel very happy to know that there is someone I can call on at any time - especially someone that is so generous with their time and they don't charge! As we know, there are no hard and fast rules with ALS, so being prepared for any eventuality is comforting for me. That being said, you need to do what is best for you two. Wishing you all of the very best.

 

[CruelFateCALS]

We recently went hospice, mostly for help with my husband's pain. We have not found any muscle/spasm relaxers that work for him so pain meds are the solution for now. They have been very quick to get him new bed, physical therapy, meds delivered. Looking for a massage therapist to do home visits. Have sent social worker, offer Chaplin visits and I myself have had "phone therapy" couple of times to work thru my frustrations, helplessness, etc. his lung capacity is still in 90's for now. They will help with his choice not to vent, helping us with what to expect and keep him at home, where he chooses. So, for us, hospice is a big help for now. For me, a godsend.

 

[AZmujer]

Hospice is such a personal decision, and you will probably know when it's right for you. One thing you might want to check out is whether your local hospice has a Palliative Services division. It provides extra support, but is one step back from hospice. We used it for a few months and appreciated the services. The nurse and social worker helped us through a caregiver and medical device crisis, and they were awesome.

Our doctor initially said my husband wasn't ready because he can eat, chew and swallow. With the biPAP on, he can even talk fairly well. His breathing is about gone, though, without the assistive technology. Eventually my PALS asked to transition to hospice, and it has been awesome. It has taken all the bureaucratic battles I was having with various healthcare systems off my plate and allowed my PALS and I to have more quality time together.

I wrote about our experience on our CaringBridge page if you're interested: http://www.caringbridge.org/visit/jamieshowkeir i

 

[AZmujer]

P.S. I should have made it clear that we have hospice at home. He plans to die at home, and hospice knows our wishes and will do everything in its power to make that possible.

 

[Loverly]

we have also been offered assistance through hospice. The ALSA here has informed us., what has already been said, that one doesn't have to be dying to receive care. However, we were made aware of one caveat, once palliative care has been ordered medicare will no longer pay for new technology so we are getting her chair and communication assistance in place before we take that step.