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.
8 Answers
Popular Questions
Related Questions
- How do you go about transitioning to hospice? We might be there or very soon. Do you have a physician not affiliated with facility evaluate?
- Borderline hospice candidate and moving stage 6 parent to another facility. Have you dealt with this?
- When to call hospice in?
- My mom saw the doctor today and he suggested I think about calling hospice after he read the letter I wrote him. I'm feeling shocked.
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?
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.
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.
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.
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.
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.