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Countrygal55 Asked June 2019

Hospice. What has been your experience good or bad?

My 93 almost 94 year old mother was recently hospitalized because of fever. Blood cultures showed a blood infection and she was given antibiotics. Long story short doctor recommended hospice. My husband and I met with a case manager and district manager of hospice company being recommended. I was told by them that going on hospice meant "you can now be a daughter."


I've been her caretaker for about the last two years. Just before her last hospitalization she had become unable to stand but could pull herself up to a seated position with some assistance. It was getting hard on me because she still wanted to use the potty chair and I was not able to lift her but would try because she was continent and wanted to still go to the chair. My back still bothers me because of this. (Sorry for the long story.) Anyway now after hospital dismissal to hospice my mother is incontinent and bedridden. It is so difficult for me just one person to turn her to change briefs, bed linens, etc. So very hard. My family helps out when they can but a lot of times I'm by myself trying to do this.


CNA comes 3 times a week for baths, change of bed linens etc and a nurse twice a week. The CNA saw that I needed help and had the idea of layering briefs so all I had to do was pull the soiled one out and there would be a clean one to use which has helped a lot. I do just keep thinking about what they said about I could be a daughter again. Not complaining ...it's been hard and gotten harder recently both physically and mentally. Pretty drastic decline from about a month ago when she was able to use potty chair and clean herself with very lil assistance. It's been so very difficult for me to transition into cleaning private areas too. It's not "gross" just difficult because it's my mother. Anyone else feel this way?


Also any thoughts about hospice and your experiences good or bad. One bad experience I've had is when the social worker came to meet us ...all she wanted to talk about was if I had decided on a funeral home and my mother was right beside her! I told her I was uncomfortable with certain subjects in front of my mother and she even questioned why. After she left my mother had a tear in her eye. I felt so bad. She has Alzheimers and is not very verbal and sleeps a lot but you never know what they may hear or understand.

Countrymouse Jun 2019
Countrygal, it sounds as though you could do a bit more squeaking - as in "it's the squeaky wheel gets the grease."

You do have a named Case Manager, so squeak at her. Don't hope she will contact you. You call her: be polite but persistent and tenacious. Have in front of you a list of what further support would really help, and see what can be done.

If you don't have a slide sheet, get one. Moving/repositioning your mother without one is rough on her and on you; and there are loads of videos online to show you how to use them correctly. In particular there's a clever trick - one of those "easy when you know how" ones - that avoids shearing injuries.

Being matter of fact about end of life and funeral arrangements ought to include recognising when the dying person really doesn't want to talk about it: the Social Worker should have taken this discussion out of the room and had it with you, instead. Too late, alas - but I hope your mother has forgotten all about it now.

anonymous809828 Jun 2019
My 90 y/o mom with Alzheimer's has been in hospice for about 4 months. She lives at my home with my husband and me. My experience with hospice has been mostly good. They brought a hospital bed to us within 3 hours of my request, and same with her bedside commode. They provide all her supplies, gloves, pull-ups, soaps, etc. They ask weekly if we need other supplies and whether I'd like to try some piece of equipment that might help. Meds relating to her disease are all paid for and delivered to my door either the same day they're ordered or the next day. I have a nurse once a week that has assured me that whenever I'm in need, they will increase her visits. I could have an aide 2 or 3 times a week if I request one. I would love to have an aide to assist my mother with showers or baths but my mom is having none of that. :) She tolerates me cleaning her up with a sink bath as needed, and shampooing her once a week as long as I don't run water over her head. She has always been a private person and it was causing too much anxiety for her to have outside help with it. Lucky for her, I'm willing and able and up to the task. She is still continent and somewhat mobile so it isn't a big deal. Should she become bed-ridden, I'm sure I'll be bringing an aide in for more help.

There have been a couple of glitches with messages getting relayed to the nurse. Also a UTI test was, in my opinion handled badly resulting in about a week of waiting for an answer and treatment to begin. But honestly, they have been very forthcoming with supplies and information, strategies and helpful hints when we are puzzled by some behavior. I'm grateful for them, and as we approach these final weeks with my mom, I'm hopeful that the relationship we have built over the past 4 months will see to a peaceful transition for my mom.

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JoAnn29 Jun 2019
Looks like who gave you the info has no idea how home hospice works. The family still has the big part of caregiving. Like u said Nurse only shows up about 3x a week. Aides are only for bathing. So ur correct, where does "just being a daughter" come in. I may call the Hospice District Manager and ask when the "daughter" part happen. You r doing more than u did before.

Now if she was in a facility, when Hospice is not there the NH staff takes over. Then u can be the daughter. But, the facility cost is not paid by Medicare.

Isthisrealyreal Jun 2019
I would call the person that sold you on this hospice and ask them how this situation makes you the daughter again and what is it you missed in the meeting.

Make them hold up their sales pitch.

You can also interview other hospices, you are not stuck with these people. You have the right to fire them and replace them with a company that meets your and moms needs better.

Have that conversation asap and get it recorded or in writing.

I don't mind dealing with things, but I mind being misled a great deal, especially when it is a paid service.

I can't tell if they are providing everything except sheets or if they are providing nothing but hospital bed and meds. They should be providing everything except sheets, but they should be telling you what type of sheet to get to make it easier to move her.

Hugs, this whole situation is difficult and terribly hard to do alone. Bug them to get more help.

Mhillwt Jun 2019
you are really doing the job of a fulltime aide.....I was my fathers caregiver for the last few years(as well as moms) but while they were both functional ie I did all drs appts with them, all med management, baths for dad, etc...but they were still mobile and able to do bathroom alone...last summer dad got really sick after hip fracture and I did hospice in the hospital - very different from home hospice.....they use IV morphine, Ativan and other meds and they knocked him out and he never woke up ie died 3 days later...its not the ending I wanted for him ie I just wanted them to manage his pain and mood so we could spend quality time together......it would have been difficult to do what you are doing and its one of the reasons I chose in patient hospice.....they do all the work but I feel guilty about it now.....so, for you, at home hospice - you control the meds so she probably wont be overmedicated, etc.....but you do need more help - I wouldn't sleep at night knowing my parent was ill in another room in same house - you are very brave!
Countrygal55 Jun 2019
So very sorry for your loss. It'seems a guilt trip all the way through this journey isn't it. I sleep in the same room with her but get very little rest. I worry about if she is eating/drinking enough. I look over to make sure she's still breathing. Such a stressful time. Thank you for your reply. Prayers for peace for you
cwillie Jun 2019
Palliative care/hospice is different here but I certainly did appreciate that I had a nurse checking on my mom and available 24/7. As for the end of life discussion - that was all very much part of the initial intake paperwork, our nurse was very matter of fact about it and I don't think it came as a shock to my 90+ year old mother that she was close to the end of life.
Countrygal55 Jun 2019
Social worker was very "matter of fact" and she said same thing you just said..."she knows" Guess what bothered me was when I tried to tell her my feelings about discussions of this nature in front of my mother...she tried to make it a debate. Oh and the Chaplin that came with her to meet us offered that she could help with "the service." So again very awkward for me. When talking to the hospice director at the hospital before making our decision they kept mentioning that Hospice doesn't necessarily mean end of life is eminent that some people get better on it. Even though your mother is almost 94 and bedridden these are very comforting words. Then to have someone from their company come right in and basically the first question they ask is what funeral home I want to use and other uncomfortable statements sort of seemed insensitive
Countrymouse Jun 2019
I completely feel for you.

Gosh, I hardly know where to begin.

What aids have you been provided with by hospice? - not people, I mean equipment, such as a hospital bed, slide sheet, Hoyer lift, that kind of thing.

What about training for you in manual handling and personal care? This is a health & safety issue: good techniques could save further damage to your back. That's apart from the importance of making this experience as comfortable for your mother as possible, and as little traumatic for you.

The thing is. Three visits per week are not enough for a person who needs complete care, obviously. Therefore, they are relying on you to provide most of *their* patient's personal care. Therefore, supporting you is as much part of their job as looking after your mother is. So do not hesitate to ask for help for YOU, as well as for your mother.

That Social Worker. What did *she* think her visit was supposed to achieve?

Are you in touch with your "Case Manager"? - or did this person turn up to the meeting and hasn't been sighted since?
Countrygal55 Jun 2019
Hospice provided hospital bed, no sheets, briefs, chucks (?sp), bath products, oxygen and pays for meds. The CNA showed me how to change her and sheets but at the same time asks for my assistance when she does this. She even said this is a two person job. She mentioned that they had had a meeting and she brought up that we need more help. Does anyone know if hospice ever sends out aides more than 3 times a week? Just thought Medicare would probably not pay for it but not sure. Thought social worker could help some with programs for assistance but very little help from her there. No haven't heard from case manager since.
MAYDAY Jun 2019
I found out that different hospice's work differently.

One hospide will give IV morphine for end of life.

Mine told me I had to crush pills "like so" and smear it into ma's cheeks... nurse forgot to tell me to add the ativan while doing so.

END OF LIFE IS NO FUN

Do the best you can. I skipped through your story... hospice programs are different...

You are right. you don't know what they process.... KEEP TELLING THEM THEY R LOVED.
Countrygal55 Jun 2019
An oncall nurse nurse brought up that I could give her morphine for brief changes when rolling her over This sounded extreme to me. My mother has knee pain that bothers her and she has a blister high on her leg where catheter rubbed her but it's not bad so wasn't sure why she recommended morphine. Usually if a well-trained aide who is mindful and compassionate changes her she doesn't complain any. I give Tylenol at times when I know the CNA will be coming to bathe etc.

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