RE: Mom and Hospice

[Guest guest]

Hi ,

 

I work as an RN in a hospice company. They could possibly enroll your mother

with end stage Parkinson's. That is a hospice diagnosis. As her dementia

worsens, they can change her diagnosis to LBD. It has to do with the charting.

There has to be declines. She is incontinent, she has periods of 'freezing up'

with the Parkinson's and is unable to walk. They could find enough to enroll her

and keep her as her disease progresses. It has to do with the way the nurse

expresses her disease process on paper. There are criteria with each terminal

illness and a patient has to have a certain amount of those criteria. We have

patients with heart disease, ALS, end stage COPD, and of course,... cancer, with

no more chemo treatments. If I were you, I would ask for the supervisor and talk

to her about all of your mother's problems. She may have another disease process

that they could start out with and then change to LBD. I hope that helps. We do

get referrals for people

who don't qualify, but they have to be doing quite well on their own for us not

to admit them. Take care, , daughter of Ralph, 82 years old with LBD.

[Guest guest]

Hi ,

I bet the verbal ability is throwing them a curve. My mother in law is a

graduate of Rutgers and taught school for many years and also was a

translator and taught English. Her verbal skills are still quite high - she

can spell Mississippi, dictionary, encyclopedia and so on (except recently

she only thinks she still can). My mil also has a terrific ability to rise

to the occasion but as days go by the real person emerges.

We had home health and they did not think she was ready for hospice until

they had extended her several times (recurrent uti's) and her RN suggested a

home health agency that has an " AIM " program (Advanced Illness Management).

http://www.ncbi.nlm.nih.gov/pubmed/17187548 We had this AIM program

through Sutter VNA. They were very quick to suggest hospice and came out

with the social worker and evaluating RN for hospice consult. They thought

she would qualify but the verbal skills threw things off a little - this is

unusual that someone in an advanced stage like she is can speak clearly.

(of course she yells all night so I think between that and her years of

speaking maybe those brain pathways are very strong?) The evaluating RN

called the director and asked if she could be admitted based on the other

factors and he agreed. We were ready to make the transition but had

trouble getting help from them one day when my mil had a uti and the

supervising RN told me to give her a pain pill instead of sending an RN out

to check her. That was a whole other can of worms.

Now we are shopping hospice providers in our area and pretty much decided on

one and going to sign up soon.

I would suggest you discuss your mother's doctor getting home health with an

AIM program for your mother - A uti will qualify for a referral or perhaps

your doctor knows how to qualify her for home health - just be sure to get

it with an agency that has an AIM program. They will come and evaluate and

if you have home health with AIM they can/will discuss hospice for you and

make a good assessment if it's appropriate timing. At least that's how it

SHOULD work J You should look up the agencies in your area that provide

home health services and then find the ones out of those that have AIM and

Hospice programs, see which you might like and ask your doctor to refer you

to that one. The way we got AIM through Sutter was my mil was in hospital

with another UTI and I asked the discharge planner for home health then

specified the agency that has AIM in our area. My mil's doctor kept telling

us it wasn't time for hospice before that. Now he understands more how much

she is struggling.

Sure hope this helps,

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of broadreach253

Sent: Tuesday, June 14, 2011 4:44 AM

To: LBDcaregivers

Subject: Mom and Hospice

I've posted a couple of times, but read the daily update fairly regularly

and have gotten a great feeling of support from this group. My mother

diagnosed five years ago with Parkinson's, four years ago with LBD and now

they've added MSA to the list of " Parkinson's Plus. " Compared to many of

your loved ones, Mom isn't doing too badly, and we are fortunate to be in an

area where we can hire really good caregivers for a reasonable price. We

moved Mom into our home almost two years ago into a suite of rooms that we

were able to make very handicapped accessible, so the bathroom is easy for

the caregivers to use to give her a shower, etc. The largest problem right

now is Mom's speech aphasia. She said at breakfast yesterday, " Have you

noticed that our conversations are all short sentences? " I had to laugh, and

then she struggled for a bit and finally added, " but they have more punch. "

Mom had a master's degree from Columbia and taught h! istory for years,

served in the foreign service and had several government positions before

retirement and has always been extremely verbal. Even with her struggle for

words, those she can get out are strong and exact. Mom can still walk some

with her walker, about ten feet at a time on a good day now, mostly in the

morning. That is her daily rigorous exercise. It's about 30 feet from her

room to the breakfast table and she walks that distance with several rest

stops twice a day, and sometimes three or four times on a good day. On a bad

day, she can't walk at all or hold herself up in her wheelchair to eat at

the table, " freezes " with her spoon in her food, and has trouble getting out

even a couple of words. She is totally incontinent, and has frequent UTI's,

but is mostly able to control her bowels with only occasional lapses. I want

to try to get hospice to be involved, but when they visited last time they

felt she still had too much time for them to be in! volved. I think they are

looking for real weight loss as a telling as pect. Perhaps I am expecting

too much from hospice, but I'd like to get some help a couple of hours a day

to assist with dressing, showering and feeding. I think hospice is misled by

Mom's ability to " rise to the occasion " and be articulate (like the quote

above) even though she can only get out that one sentence. Once she begins

to struggle for words she just raises her eyebrows and sits in silence

without responding, but its as though she can think while silent and

construct a sentence or two and then get them out quickly. I can't believe

we can't get any assistance from hospice at this point, and would love to

get anyone's suggestions. , daughter of Augusta, almost 81.

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