M1

White Crane

M1, i’m sorry this is so hard. I thought hospice was supposed to make things easier. I am praying you can get the proper care. for your dear partner.

Brenda

Lgb35

thinking of you M1❤️

We are no where near your situation but I know we will face it at some point. I am at this point probably naively thinking I can keep DH home not to mention financial issues.

it sounds like you have financial means to work with. Have you considered making a room in the house safe for her with her tv, cameras to detect movement and some type of alarm to go off if she puts her feet to the floor.

I have magnetic locks on cabinets which contain dangerous things from tiny hands in my house. I wonder if some of those types of adaptive devices would help.

it would also depend how much of your time and ability to care for her with hospice or a health care aid (highly vetted!) to help out would be doable.

tough decisions❤️. Also so glad you two have not left things unsaid. What a blessing! You will make the best choice for both of you!

ghphotog

My DW isn't on hospice yet, possibly less than a year I presume but my mom was on hospice. They were very quick to setup her room with a hospital bed but other than that I wasn't very impressed. Once on hopice the only care or medications they should recieve are for comfort care to my understanding and experience. I never once spoke directly with the hospice nurse, only through the MC nurse. I never saw them come in and I was checking on my mom daily.
My mom's situation was a bit unique. They had to stop all blood thinners for the PAD in her legs because of her brain bleed so her legs lost all blood flow and became excrutiating when they would try to move them.
They were at least supposed to keep her comfortable with pain medications but she was in pain every time I visited and until she died. At the end they were just starting a daily morphine regimen rather than "as needed". I had to push for better pain management. Anyway she died before they could start the daily morphine ever three hours.

ImMaggieMae

Is your partner back to baseline after Hospice restored her medications?
Until recently most of the comments about hospice were very positive. The idea of having someone on call 24/7 and needed medical equipment supplied sounded like a very positive thing. But recently, both in a few posts here and in one case someone IRL, the medication part is sounding like a nightmare. I understand that comfort care is the only concern of hospice, but drastic changes like M1’s partner and ghphotog’s mother had to endure, or in another case, withholding antibiotics for a UTI and allowing to infection go into sepsis and more suffering doesn’t sound like compassionate care to me.

M1

just responded on the other thread. I remain unimpressed with how hospice has managed her meds so far, we’re having ongoing difficulties finding the right balance and getting the orders corrected. Right now she’s over sedated. I’m probably hyper vigilant about it because of my background, but honestly it just shouldn’t be this hard. On the medication piece I know I could do better on my own. But I still don’t think I could physically manage her at home. Tough dilemma. I remain a hospice advocate in general, but there are still gaps between theory and practice.

jfkoc

Agree, you will need extra hands if you bring her home.

I remember never being able to reach a good solution….maybe none of the options were "good"…some just better than others.

midge333

Personally, I think it is perfectly reasonable to withold antibiotic treatment during hospice care. That said, pain control is paramount and it sounds like @ghphotog and @M1 have not had an optimal experience with their loved ones.

ButterflyWings

Adding my 2cents- hospice is an absolute godsend for us but it is in-home hospice and I am the primary caregiver, so the buck stops with me.

When things have been suggested that I did not agree with, I could veto them and work out another option.

And two separate hospice lead nurses have expressed appreciation for the knowledge and experience family member caregivers contribute to their work with client/patients.

I can imagine that with an MC, the hospice contact deals with the facility as main interface, not the POA or spouse/family member, so there is a more arms length relationship when decisions or changes are made.

That could be tough.

M1

I think that’s exactly it BW. And while there are one or two sophisticated nurses in the MC, there are several that are not. Add to the mix that my partner can’t/wont tell anyone when she needs something, medications written for “as needed” use are worthless unless I’m there. So finding the right mix is more difficult.