M1

jfkoc

Sorry, duplicate post.

While I am a big advocate of Hospice I know first hand that there are stupid people who get employed by them. I learned the hard way. I switched Hospices after interviewing several.

You are still in charge of your partners care! Further you can continue to use a private Dr.

It sounds like it may be coming more possible to bring her back to you if you can find additional help.

M1

my kids are very opposed to my bringing her home, and I think they’re probably still right for now. Everything is still on the table. Rough day today. Many more like it and her remaining journey may be short.

jfkoc

Do what is best/easiest for you.

Jgirl57

sorry for your rough day M1 and for your partners unnecessary suffering. I hate this disease

psg712

So sorry M1. I hope that the struggle does not last much longer, for her and for you.

JeriLynn66

Peace be with you.

Denise1847

Dear M1, I wish there was something I could say to ease the pain you are experiencing right now. I pray that your partner's journey will be peaceful, and that you will be infused with the strength needed during these difficult days.

M1

You all are so kind and it helps to hear from you…..I'm not sure where this is going to settle out. The initiation of hospice has not been particularly smooth. I have to think a bit more about why they set out to make medication changes that weren't clearly indicated—-and thereby stirred up trouble. I've had this issue with chronic narcotics in so many scenarios, I didn't expect to have it with hospice. And ironically, they wanted to start her on new medicines for better blood pressure control—when really, who cares at this point??? Kinda odd.

Because of her being in acute withdrawal yesterday morning I was there for ten hours yesterday. I have had to be there every day since her fall. I can't sustain this pace—but things are not stable for me to be able to back off.

Buggytoo

Wishing you and your partner the peace and comfort you have given so generously to so many of us!

Quilting brings calm

@M1. Is this the only hospice agency available?
To be truthful, I didn’t get the warm fuzzy feelings about the agency the AL called in for my step-dad. Once they accepted him, I never heard from the hospice at all. Even though I requested a call after every visit. The hospice nurse communicated with the AL nurse. If she communicated with my mom, that was a wasted effort because of Mom’s dementia.

Of course, he was only on hospice 13 days at the time of his death. The AL staff were the ones to give him his shower, and then a sponge bath. They were the ones that hand fed him and changed his sheets. He didn’t need a hospital bed as he already had an adjustable memory foam bed. I just never felt the hospice ramped up to be useful inside the AL.

midge333

@M1,

I am sorry the transition to hospice was so bumpy. I can understand adding narcotic to her existing chronic regimen but changing the regimen on day one seems ill-advised. I can understand stopping antihypertensive drugs but I don't understand trying to optimize an antihypertensive regimen in the hospice setting. Strange.

ImMaggieMae

M1, is there any chance of switching to a different hospice?

mrahope

I am truly feeling like you deserve better, as does your DW. It sounds like they were removing your partner from long-term narcotic treatments in a sudden way. Could that be right? My DH was on narcotics for years and even tapering over a months-long process was a terribly bumpy ride for both of us. Please keep us posted on how both of you are doing. The hospice folks are supposed to make this journey easier, not tougher. Something doesn't seem right.

M1

this is the only hospice at our MC and certainly has the reputation as the best in town. But we’ve obviously gotten off on a wrong foot. Today when I got here I found out that in addition to all the narcotic changes they had also stopped her daily dose of Miralax, which has worked great to prevent constipation-and instead had written for senna suppositories “as needed.” Why in the world would you do that in someone who can’t ask? I’m going to play the “doctor card” and pull rank on Monday for a Come to Jesus meeting. I don’t normally operate that way, but this is ridiculous. Meanwhile I made a quick dash to the drugstore so she’s had her Miralax. Quicker than waiting for them to fix it.

Caro_Lynne

M1, did hospice make all the changes? Without consulting with you? Is that how hospice works? So sorry for what you and your LO are dealing with. xo

ImMaggieMae

https://alzconnected.org/discussion/comment/212872#Comment_212872

I’m not understanding. This hospice is part of the MC? If it has the reputation as the best in town, that would mean there must be others. I thought that the client chose the hospice and they went wherever needed, to an MC, a SNF, a person’s home or wherever. The way they are treating her with meds seems just wrong. What an awful thing for her to have to go through.

easy23

My mother was in hospice at an AL facility in NJ. She used the hospice that serviced that facility. I was told they had to have a contract with the facility.

​fesk

M1, I don't post often these days but do read often. I am sorry you have to deal with extra stress of hospice not handling things correctly in addition to your loved one's decline. She is very lucky to have you watching over everything. I hope all is resolved quickly and more peaceful days are ahead.

hiya

I’m so sorry you and your partner are going through is sad situation. Maybe request another hospice nurse from the same agency? Sometimes one person can make all the difference negative or positive.

trottingalong

Definitely use the ‘doctor’ card. I would be using Everything at my disposal. I truly cannot comprehend what or why they are doing what they are doing. Wishing you the best on Monday that you can get this resolved.

jfkoc

I think Hospice choice is up to you…at least it is here. We kept our private Dr and no changes were made w/o my approval.

Chammer

I would pull the doctor card. In dealing w the health care system recently for DH, I finally used the "my first career was healthcare... not direct patient care ... hospital administration ... and while health care delivery has changed, urgent medical issues are still urgent medical issues. This is an urgent medical issue" and surprisingly (or not) things started happening a lot quicker.

Not my preferred way to achieve action but it seemed to help.

Jo C.

M1, I am truly sorry for the stress and upset this has been causing. Usually, a care facility is contracted with one Hospice to provide services; however, if it is something worthwhile for you, it would be a positive to speak to the Administrator to see if they would permit a different Hospice to provide services. It may be as simple as the Hospice carer getting cleared for licensing, etc. which the Hospice and facility can easily and quickly do.

If it is a matter of one person who is failing, if you contact the present Hospice's Director, you will be able to explain the difficulties and your expectations and have a new person assigned.

Please let us know how you are doing, this is a very difficult set of dynamics in what is a very emotional time. We will wait to hear from you - we truly do care.

J.

fmb

By all means, play the Doctor card and play it as hard as it takes to get them to listen to you. Hospice is supposed to be a collaboration with the facility, patient and the patient's family. It is not their way or the highway.

To second what Jo C. said, while one hospice agency may have a contract with a particular facility, it is usually possible for another agency to obtain a 1-patient emergency contract in order to serve a particular resident. At my DH's ALF, I have seen personnel from at least five hospice agencies coming and going.

Praying that your way may be made smooth so you and your dear partner may walk the remaining path gently. Please take care of yourself. (((M1)))

Vitruvius

It amazes me how many medical professionals don't really understand dealing with a PWD, in hospice no less. I've seen it myself. It's hard enough for us to deal with our LO's dementia without well meaning but poorly trained/ill informed "help".

I hope it gets better for you.

JeriLynn66

M1, hoping everything goes well for you today.

ButterflyWings

@M1 Ive been late to this conversation but adding my support for you and your partner.

I too found that hospice (especially the 1st one) and even the respite stay nurse/MC Dr seemed to be itching to “adjust” DH’s meds just because. Almost like it was an expectation that whatever was working, needed to be tweaked or “improved” upon.

SO frustrating because it more often caused a problem I could have predicted if only they would have asked or listened to me. But the dismissive attitude is real. Yes if your MD status can help override that patient safety risk then by all means.

The worst thing is our LOs may suffer when this attitude prevails, when we are expecting HELP, not HARM! Whatever happened to the “do no harm” medics’ Pledge, or even just common sense of “if it ain’t broke, don’t fix it?!”

I’m so sorry you and she are having to deal with this. Praying it gets sorted out & urgently corrected today.

Denise1847

https://alzconnected.org/discussion/comment/212835#Comment_212835

M1,

I would think that you are entitled to an explanation to why they changed meds. Sounds fishy to me. You are the POA, spouse and caregiver. They should be answering to you about her care.

M1

Meetings went relatively well today, hopefully we're back on track but also kinda back to square one. So far the only hospice benefit is the adjustable frame bed.

ImMaggieMae

https://alzconnected.org/discussion/comment/213077#Comment_213077

Did they give a reason for the change of pain killers and the abrupt withdrawal of the one she had been taking that was helping? I think they have some ‘splainin to do!

AnderK

I am so sorry, and have no more advice than others have shared. Just my heartfelt wishes for you.