New hospice

[Guest guest]

I signed my mil up with another hospice provider last week. They are

local, work with the local community hospital should something ever come up,

also contract with the local nh for the medicare respite benefit. This

works good for her if ever needed as they all know us. The biggest

difference is the warmth, compassion and competency. No one got lost

finding our place out here - they listened to the directions I gave. All

were open, caring - nothing cold and standoffish. This new hospice service

met us where we are on all levels.

The best things about them is their warmth and compassion and competency.

They are truly available to us here 24/7 and have no problem coming to the

house to do a cath for a ua sample if needed. I have had a feeling my mil

was getting close and worried that she might not last for my sister in law's

visit the first week of January. She just has gone downhill so quickly with

several big changes each week which I understand could mean she only has

weeks or could go anytime. Her circulation is so poor that her feet are dark

purple and skin splitting. Her resting heartrate is very fast. Her

breathing gets difficult. Yes she can still sit up, she can still walk

with a lot of assistance and she is fairly alert but her body wants to be

straight and contract and she sees a lot of " funny things " . Her nurse sat

down with my husband and I after examining her (spending plenty of time

doing so) and said it plainly. She thought it could be a matter of weeks

and that she also felt she could go at any time from heart failure. All

the signs are there that her body is in the process of shutting down. She

told us we should let her daughter know and suggest she try to come earlier.

Now as shocking as that was to my husband I was relieved because I had been

feeling this and feeling I need to get this through to him somehow and

though he was hearing me he was also thinking it probably wasn't so, she

would bounce back and be better like she has always done. I have wanted him

to know so he would not have regrets of not saying, " I love you mom " when

saying goodnight and also not sweat the small stuff. The shift has been

amazing. It actually feels peaceful, we are on the same page again.

It is so nice to have this support. This is what people have been telling

us what hospice should be - this is what we needed so badly. We have access

to people to talk with, to cry with if need be. The social worker is going

to help with some tricky paperwork and get the county social worker to come

out here and make a home visit to complete paperwork. They are supportive

of my mil's caregivers as well and have no problem sending their Chaplin

(who has visited twice and sang with/to my mil) and a minister from her

denomination. They have volunteers that sing or play guitar and just talk

nicely. All the people on my mil's team are local - they live within

minutes of us. My husband and I finally feel supported in this and this

is helping a lot in facing ever quickening decline and do things like make

sure final arrangements are in place and who will take care of things while

we're away (she is to be buried in so cal so we have to do the funeral

service there which will take a few days at least). They are even sending

out help with the bathing twice a week to assist the caregivers while they

learn about her and then give them a much needed break so they can get a

walk or something. We all need these breaks.

They also have no problem in seeing if a UTI can be treated - that means a

UA and then the appropriate antibiotics. This is what we wanted. If she

gets a resistant infection then so be it, we will just do what we can here

at home and if it can't be treated then we continue to make her comfortable.

Same with pneumonia. If it responds to oral antibiotics that's fine. If

not that's fine too, we are doing our best without the heroics that my mil

preferred to avoid.

I can say from this experience for anyone going through this take the time

in advance if possible to interview all hospice providers in your area and

ask a lot of questions. They should be able to answer them all. Get an

idea of what you and your loved one would like and make sure you make that

clear during the interview and see how they respond to it. Everyone's needs

are different. Some don't want to treat infections at all. Some want to

treat with what can be done at home only (what we feel comfortable with).

Make sure they are comfortable with your pets and will have someone

available 24/7 if you feel you need/want this. Ask about volunteers, CNA s,

Chaplin, RNs, if they have a team that your loved one will see familiar

faces or if they change frequently. Ask about working with your loved one's

doctors for an alternative if their standard medicines aggravate LBD. Then

go with your gut feeling which one will meet the needs of your loved one and

your family. This first one we tried maybe it was the office or something

but it didn't work out and the people did feel cold and distant to all of us

and were not familiar with our area at all - they all got lost, and they did

not know about LBD. They also were not available 24/7 as they had said and

we found that out on that weekend.

I feel like I can breathe again, finally. It really makes HUGE difference

having a hospice that is a good fit for patient and family. I thought I

would feel bad about having to fire the first one and then sign up with

another and even some people were critical about wanting to treat a uti. I

felt very lost and upset and maybe we would never get this wonderful help

people talk about. But I am so very glad I went ahead and signed up with

this other service. It is exactly what we needed. We have the support we

need to get through this now.

Dorothy