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stephie

Distinguished member
Joined
Mar 28, 2008
Messages
117
Reason
CALS
Diagnosis
01/2007
Country
US
State
mn
City
coon rapids
I have been trying to talk my husband into hospice for at least 6 months now, but he has always said he is "not ready yet." I finally called hospice and asked them to come out for a consultation. I told my husband that they were coming out to explain hospice to us and he could decide whether he wanted to sign up or not. Well, 30 minutes into the visit he was saying "Sign me up!"

My husband thought that hospice would pressure him to "give up" on life and that they would not listen to his wishes. A wonderful doctor came out to visit and told John that he could see that John had a good quality of life and wanted to live it to the fullest. He explained that their only goal is to get us everything we need and keep him comfortable. We did not realized that everything will now be covered 100%. They deliver all of his prescriptions to the house and we pay nothing. We have returned all of our equipment to the ALS loan pool and hospice has replaced it with their own. A nurse comes by once a week and a home health care aid comes twice a week for an hour. (We could have gotten more aid time, but John has to adjust gradually).

Hospice has pre-breavement and bereavement counseling for family members. They pay for all of his tube feeding supplies and formula and will prescribe anything he wants or needs.

If your PALS is putting off checking into hospice, I would highly recommend that you have someone come out for a consultation. You do not need a doctor's referral for a consultation. You will need a referral to sign up, but hospice will also take care of getting that.
 
I know it works a little differently here in Canada.. But when you are on hospice here, you are no longer eligible for respite care. We can currently put a PALS in a care home for a short period of time. Up to 3 weeks to give the caregivers a break. And trust me.. we use it!

We would LOVE to go on hospice, but need to wait till we are ready to give up the respite option.

Agreed though.. Hospice can be such a positive experience.
 
Hi there. Am in MPLS and am to the point where it's time to make that call. Can you give me who you used? I know there are different services to call but knowing that you are having a positive experience with an MN hospice who clearly understands what's required with ALS helps. My mom has a feeding tube but will not get a trach. Listening her try to gasp for air while taking a nap on my couch today was breaking my heart. Thanks so much for the referral.
Linda
 
Hi, if you go to an ALS clinic ask them who they have worked with, and if you can keep the clinic and your breathing clinic rep when you sign up with hospice. This will help not to repeat all of the test and kept your ALS experts in the loop. We have been very happy with hospice since signing up 2 mths. ago.


Good luck in your search,

Penny
 
We went through Health Partners Hospice. We are very glad we called them!
 
Hospice has been an amazing life line for our family. We have had them in our home for 8 months. They handle all of the equipment and medication. They send a massage therapist in once a week..a nurse...and an LPN as an aide 4 times a week. My hubby is still able to go out to pool therapy. I actually feel like his quality of life has improved since having hospice involved. They have been a huge support to me as well! Hope your hubby is open to meeting them.
 
Do they give massages to the caregivers too? LOL
 
I WISH! I really think that would be great. Our local ALS center often has a massage therapist come in during our caregivers group. I actually am so happy when I see him relaxed....and knowing that he is in good hands...allows me to breathe easier for a bit!
 
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