Hospice

[Ladyinn]

I read posts of caregivers who are in a desperate need of relief. And having been a caregiver, twice (husband and mother), I know what they are talking about.

When I was the caregiver, I waited to call Hospice for help until weeks before my husband died, and days before my mother passed. I had listen to all the things they could do for us when I signed the papers but it was too late to use their services! I thought they helped dying easier at the end. Boy, was I wrong. Hospice does do that but their purpose and services are so much more.

I swore that I would never have a caregiver experience such emotional stress for me. After my mother died in December, I called our local Compassionate Care Hospice and talked with my doctor for a Rx. I don't plan on dying anytime soon and Hospice is helping me live life comfortably, longer. It is also helping my primary caregiver, my partner, with needed breaks each day.

My aide comes in from 8-10 M_F to help me get ready for the day. She showers and dresses me - puts my make-up on, does my hair and even my nails when needed! No more manicures or pedicures at the local salon -- all free now! Oh, and when I am feeling the need - even a massage! I feel good to start the day. More importantly - my caregiver has some alone time to use as he needs. Some mornings he goes to the office and does work and some days he meets the guys for coffe at the local bakery!

One day a week Hospice sends a volunteer in after the aide leaves and she is here till 5 to watch over and help me. That is the day that from 8-5 my partner can get away for business or pleasure. (Mostly he has been shoveling walks around here and plowing our road so guests can get in - not sure it is pleasure but he doesn't have to worry about me being alone and falling.)

We can both tell a big difference in our stress levels and are really enjoying life again. I don't know if this makes sense, but I am grateful to Hospice for helping take some stress out of our lives - especially helping my partner have some time to live without worry -

I write this to raise awareness to those caregivers out there, that you too may have options for some relief. You just need to first admit you aren't super woman/man.

Smiling and hopeful,

Diane

 

[abbas child]

Diane, what a wonderful post. I'm so glad you're getting this care now, while you can use it for enjoying life. Your description surely will take the horror out of the concept for many who have bad mental associations with "hospice". It is great to hear that relaxed voice of yours again.

 

[Pepper]

Diane, wow, 8-5. I was told it is for 2 hours. Each place must be different. I will phone the volunteer department and get more info tomorrow. I believe it was the social worker who gave me that, 2 hours once a week. So far I have used the volunteer once only. Hospice is wonderful. They are practically my main and only support. I am so glad they are of such help for you and your partner.

 

[Ladyinn]

Pepper, the aide is for 2 hours a day , 5 days a week - the voluinteer is only once a week and comes after the aide is gone. The Hospice is Compassionate Care Hospice. I used hospice associated withe the hospital for my husband and it was much more restrictive so if there is more than one organization in your area you might want to "shop around".

Hugs,

Diane

 

[mare]

Diane-
Thanks for your insight here. Certainly, having experienced "both sides of the coin" is very valuable to those of us who only experience one side. Food for thought; or even the being of a conversation.

Hugs,
Marianne

 

[Jellycat]

Diane- sounds great.
I am the cals in our house. I know I would not still be as well as I am without the support of hospice. In particular the 4 hours a week when they care for her so I can get a break. They offer her massage / physiotherapy/ aquatherapy/ company different from mine. I'm so grateful. Thanks for your post. Hope the nails are looking glamorous!

 

[Ladyinn]

I am glad that my post has given food for thought and perhaps opened some doors for conversation here and in homes where ALS lives and breathes.

I have to say that mornings being pampered and feeling like I am at a day spa, coupled with my housekeepers help and the hospice volunteer that comes in and helps me with correspondance, etc., I wonder why people complain about this disease. I've never had so much love showered on me. Of course I would prefer to do things as I did them before - but I also would like to be 21 again. Since neither of those miracles have happened YET, I am learning to use the tools, the organizations, and the people who can help me live a quality life better.

Now from the caregiver's side -- I cared for my husband for nearly two years before calling hospice. I felt we lost the loving and even sexual relationship that we shared for 38 years not long after he became totally dependent on me. I felt I was a widow long before he died.

I wish now (hindsight, ain't it wonderful?) that I had not been so stubborn - allowed others to help and definitely regret not calling hospice till the end. We could have had time to cuddle and share memories as well as to make them. Instead I thought I had to do it all.

Again, when it came time to care for my mother I tried to do it all - only this time I was doing it and falling down - ALS was moving into my life and I didn't know it. As things progressed and it seemed she was in better shape then me - I had her move into an assisted living facility and eventually hospice on her last hospitalization. Tough choice but I needed to take care of me if I was going to have any quality to my life. Her life might have been better if I had called hospice sooner.

Anyway, I hope my experiences can help others do what is right for them without guilt.

 

[NotALS!]

I have a financial question relating to hospice: Do you have to be on title 19 to recieve it? I've watched as my parents and inlaws have lost all their savings/home when they went into nursing homes and on title19.

As an ALS patient, would it be wise to put our house in my husband's name only? I don't want him to lose half of the house if I have to go on title 19. We still have a young son to put through college.

 

[Ladyinn]

No income requirements. All you need is a doctor's Rx requesting Hospice evaluate you and that you have a terminal illness. Diane

 

[sadiemae]

https://www.alsforums.com/forum/gen...hings-know-about-hospice-before-you-need.html

 

[Ladyinn]

I do know there is a difference in Hospice organizations and requirements as well as services may differ between them. Medicare, however pays all the same. My hospice allows me to maintain my regular doctors, clinics, etc. When I visit them they code it as a hospice patient and medicare pays. However, medicare will not pay for a vent or peg as long as I am a hospice patient. If I change my mind later, I can remove myself from hospice, have the procedure (s) and medicare will pay. (That is in the paperwork I signed) 30 days following the procedure, hospice can re-evaluate me to see if there is further decline and I can resume hospice at that time.

Compassionate Care is the name of my hospice - they are nationwide and can be found, mainly, in rural communities.

 

[ransan]

Hospice has been wonderful, it was a large load off of me . I was the only one bathing and keeping my mother's daily needs for her plus working a full time job I was so tired I could not have lasted much longer, I finally got the family to agree to hosipice if they were not willing to take on the job and help me then someone was going to have to. I was told we are not ready for hosipice maybe they were not but I was. My mom was feeling bad because so much was on me and she was fine with hosipice coming in.