Hospice anyone?

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bythesea

Active member
Joined
Aug 6, 2009
Messages
82
Reason
PALS
Diagnosis
02/2010
Country
US
State
NJ
City
Bergen County
Yesterday the hospice group called, upon the referral after my last clinic visit and low fvc score.They said they will provide 20 hours a week which is fine for me right now. It actually feels good something in place. The admiting nurse came here-couldn't have been nicer. My wife's friend and RN said that hospice nurses are the best. She left us with a hug and said that so much of it has to do with how you deal with it up here, tapping me on the head.
 
what exactly will they do? do you know,
I am glad this will help you
 
They will provide an aide 20 hours a week who will do most anything; cooking, cleaning, shopping, toileting, going outside but can't handle medicine. They also have people who visit for companionship, spiritual needs and other. I'm expecting another RN, a nurse will visit 3x a and the Social worker called. They will help withe PipPaP when I get on and just about anything. Stay sexy doll-yoou are in my dreams
 
I hope they can provide you with the comfort and care that you need and deserve. You will be in my prayers.
 
Thanks for your link SadieMae. Honestly I've been so self sufficient even for the seven years of being disabled with Cervical Dystonia, I don't know what I will do with all this coming and going.
 
I have nurse everymorning and night, home help every morning and now the doc is sending in the hospice team. I have to keep going round the house throwing stuff around and peeing in corners so there is enough for everyone to do. running the wheelchair through mud outside then coming back in and driving round the house is a good way of keeping em busy, too
Love to all
 
Iris, you're such a hoot. Bet those hospice people get so much fun being with you. Did your dogs teach you to pee in corners? XO

Bythesea, I hope you find Hospice to be very helpful. I hope the traffic slows down soon, though (aren't visitors tiring!), and it's both restful and helpful.
 
I find that interesting that they provide so much help, I have taken care of my pals 4 3 years and been on hospice 4 almost 2, I receive help with a bath 3 times a week, a nurse comes in 1 time a week, but thats it. where are you @ because i would consider a reloation 4 that kind of help.... Recpite care is so needed...,
 
Oh Dan, I really do feel for you. You have been so faithful in caring for your friend. bythesea is (see his first post, top of page) in New Jersey. Hospice is said to be quite different both state-to-state as well as between agencies within an area, assuming there is more than one Hospice in that area. IrisMarie is of course, living in France.

I really wish you did get more help, Dan. God bless you for all you do.
Ann
 
Dan.. if you are not happy with the hospice care you are receiving, find out what companies your insurance will cover and look into changing! California has some excellent hospice groups. With my mom we used VITAS.. they were amazing. For Glen, hospice was covered by Kaiser, who runs their own hospice program. They too were awesome, but we had to be a little more proactive to get things done.
 
I had the most amazing experience with our new hospice nurse on Friday. I was explaining our routine..our home set up..our emotional support..our lack of physical support..our children. I think I actually sounded like a robot...always like an out of body experience when I am actually explaining our life. She just looked at me and said..you are doing a wonderful job. I think I had a look of shock.....it was actually nice to hear from a professional. I then explained that I am on auto pilot...and helping my husband live as much as possible while he is dying. I said, I am calm now...but there is going to be a time that I am going to fall apart. She looked at me again....reached her hands out to me and said you will not be alone..we will surround you and hold you up when you need us. It was comforting...just thought I would share a nice moment in a crazy situation.
 
That is wonderful! My experience was exactly the same.
 
Thanks Kelly for the wonderfully put thoughts. The admitting nurse had said something similar, about how wonderfully we seem to be doing (adjusting). I kind of looked at her sideways, what? But they (hospice) must daily see people PALS AND CALS whose situation is desperate.
 
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