Topic: Hospice Care vs. Home Hospice Care

I am so torn as I wonder if I am making the right decisions.  My Mother (76)has fallen twice within a 3 day period, I was with her and she was standing with her walker, but her legs just gave out from under her due to the additional 35 pounds of fluid she has retained.  She is a very petite woman and has never had this much extra weight to carry around.   After the last fall, she was transported to the emergency room and they xrayed her and did an MRI to see if she had broken her hip.  Luckily, she did not, but they decided home hospice was not working.  They transported her to a hospice care facility initially thinking she would only be there a few days to get stabilized, however, she is getting weaker - as the fall really took a toll on her.   She did bruise her hip and severely scraped her hand, elbow and behind her ear.  (she fell against the hospital bed they had just delivered the night before).  Now they tell me that she is bedridden and getting weaker.  They tried to lift her into a recliner today, but she collapsed like a rag doll.  She tries to eat to "keep her strength up", but as hard as she is fighting this battle it keeps taking more and more out of her.  She was in hopes of going home this weekend, however the doctor told her she would need 24 hour nursing care to help me keep her safe and comfortable.  This is a very expensive endeavor as well as heart wrenching for me to try to abide by her wishes, yet knowing she will probably never get to go home again.  I stay by her side 10 -12 hours a day to make sure she is taken care of and spend as much time with her knowing I may not have her very much longer.
I know I am kind of rambling, but I know this new support I have discovered will give me guidance and assurance.  It is amazing how much this "feels" like a great big hug and a shoulder to cry on and share the same experiences that some of my very closest friends that I havce known for years cannot give me.   

Fortunately, for now she has not had some of the symptoms I have read on this site,  no vomiting,or stomach pain, just some severe diarea which they are trying to get under control.  She also has had degenerative arthritis for a number of years, not to mention taking care of her own mother during her recent bout of colon cancer until her demise a little over 2 years ago.  Ironically, she is in the same hospice center, however we were able to take
Grandma home where she passed away 5 days later.

I would appreciate hearing from anyone with these same issues of not being able to grant these  final wishes of someone you dearly love and are pleading for you to take them home, and not understanding how dangerous it is for them.

Re: Hospice Care vs. Home Hospice Care

CS - Please accept a great big hug from me.  I know exactly what you are going through, as my 85 YO dad is in exactly the same situation.

You don't mention insurance coverage, but I would begin there, with the help of a social worker, if necessary, to find out what your options are for her 24-hour care.  I know exactly what you mean - it is so difficult for you and your loved one when living at home is no longer an option.

My dad was fairly mobile with cane and walker while at home, until he began falling due to fluid and lack of strength.  Almost a month ago he developed pneumonia and landed in the hospital.  A week later, they transferred him to a nursing/rehab facility in the hopes he would recover and gain strength.  A week after that, he landed once again in the hospital because the nursing center felt he needed more care.  After 3 blood transfusions, antibiotics, and attempts to drain more fluid, he is no stronger, to weak to lift himself up, can barely feed himself, and is totally bedridden.  He cannot go home because he lives alone during the day while my brother works.  He requires 24-hour supervision, so the decision has been made to place him in a nursing facility.  I fear this will be his last stop, and he will receive hospice care either there or be transfered to a hospice facility.  After long talks with doctors and social workers, dad has come to the realization that he will probably never go home.  He is sad about it, but I think he has come to terms. 

Do you have a clergy member, social worker, or some other caring, supportive person who could speak to you and your mom in an attempt to help her understand that everyone loves her and is doing the best they can to make her feel comfortable and cared for, even though it's not home? 

I have been agonizing over these same decisions and it's been consuming me 24 hours a day, while I also try to balance my family and my job.  I spent the last 2 days searching for a nursing center that I felt would be a good fit for my dad, which probably will be his last transfer.  With every decision I make, I always wonder if it was the right one.

With supportive family, friends, and health care workers (and this wonderful forum), you will get through this, as I know I will.

My thoughts are with you.

Jan