At King's today

December 10, 2008

Thank you to all who wrote! In fact before I went up there I got the

website for the state elder care ombudsman (not the right title but I can't

think of it right now), as well as patients rights documents for the state,

for medicare/medicaid facilities, and King's own patient rights document, so

I would have all my ducks in a row. I appreciate SO MUCH your caring, and

your advice.

First, let me say that I didn't need to be mad. Apparently has

something major and painful going on in her life, and the

(administrator) apologized several times - it wasn't me, and she wasn't

angry, I just " heard " it that way. (DON) also came in, as well as

Edye who is their compliance administrator. had had to go home for

the afternoon and wasn't there - just as well, I believe.

Second, yes, this whole " killing " comment was a last straw situation.

Apparently my mom hasn't bathed in a month, that's major...the other thing

is that, if another resident wants to be transferred from w/c to bed or

whatever, my mom will lift them. I don't have to tell you why that is a

MAJOR problem. My mom has been instructed MANY MANY times that she can't do

this, but she persists.

I was there for over 3 hours, and a lot transpired. I will try to give just

the highlights or this will be really long.

First we talked to privately. I acknowledged (setting ground rules so

to speak) that I understand she has a concern for all of her residents,

meeting state regs for licensing, etc...and that I hoped she realized I do

understand that but also that I am there to advocate for my mom. So we

started from that point.

I explained that her staff has worked wonders with , that her care

there has been excellent, and the staff without exception has worked above

and beyond for my mom's health and safety. I told her that I doubted I

could find the same quality of care elsewhere, and didn't want to have to.

I said that my goal is to keep her at King's, and I frankly wanted to see if

that could somehow be worked out.

Next I told her about my mom's sleep deprivation (first she'd heard of it,

her response was " This changes everything! " ) and about her dementia-caused

inability to accurately express her frustrations and needs, that she may

have chosen the wrong words but that didn't mean that she would act on them.

I also explained that for several weeks I have been noticing a slow decline

in my mom's frame of mind, mood, ability to reason or communicate, etc. as

well as a slow increase in her frustration and depression, that it has been

very gradual, and I acknowledged my part in not addressing it quickly due to

my own health issues of late...but that I should have, and this whole thing

may have been prevented. I told her that I believe in my heart that my

mom's meds need to be evaluated, and that these are all signs of that, and

not the problems themselves. (Well, except for the lifting other patients

thing which has been ongoing since she's been there...)

After nearly an hour of very respectful and fruitful discussion, she agreed

to give my mom a week to see if I could get her to bathe or shower, to see

if she could stop lifting/transferring other residents, and to see if more

sleep would improve things.

I then suggested that we talk to my mother, together, and explain that if

she leaves there her piano won't go with her (I decided that I'm not going

to deal with fighting them to get it to go, or moving it again - it is a

MAJOR undertaking, I didn't tell that but it is my decision) and she

will be too far to come to my home for visits, that I won't be able to see

her as often, or run over there when she runs out of pop or cigs, etc., that

a 10-minute shower once a week would enable her to stay there with her

friends and solve all of these problems (turns out THAT is the main issue),

that's all it would take.

Well and and my mom and I sat down and I told my mom we wanted to

include her in a discussion of her care there. She seemed open to it.

First we mentioned the lifting thing, and she said, " OK, all you had to do

was tell me. " Then I mentioned the showering, and she started getting irate

and tried to change the subject. was going to let her but I said,

" OK, we'll talk about that next, but first we have to resolve the shower

issue " and started again to explain that it was a state reg that they bathe

weekly...she said, " Then I'll go somewhere else " and told her the regs

apply to every care facility and it would be the same there, but that they

were willing to work with her, allow me to supervise her instead of their

staff, let her choose the time of day, etc...but she said she's taken care

of her own hygiene her whole life and wasn't going to put up with this (plus

more, including lots of swearing), got up and left, slamming the door behind

her. (They didn't seem to agree with me trying to keep her on the subject,

but I told them I couldn't let her control the conversation or it would be

useless, they acknowledged that I was gentle about it but I felt I needed to

try and push her slightly to stay on topic and they understood that even if

they didn't necessarily agree - later they told me they were glad I did

because now...well, I'm getting ahead of myself...)

At this point concurred with me that, when my mom was doing well,

before she started this decline (which, BTW, began when they changed her

room), she showered without a problem, and that she didn't believe the " I'll

kill Gladdie " comment meant a literal threat but rather an expression of

frustration, and that she tended to agree with me that it was time for a med

eval.

My mom came back in and started saying that she down to her last 2 pair of

underwear and they'd better find it (she gets them wet, then puts them in

the trash to hide the fact)...but before or could say anything I

said, " OK, that's another thing we'll discuss, let's finish with the

showering problem first. " She started yelling and left again, and went to

her room and closed the door.

(At this point they had put her into a private room for observation and for

the safety of other residents.)

Just so happened the doctor came at that time, so we called her into

the meeting. After listening to all of us, gave her opinion that it

would indeed be in my mom's best interest to keep her at King's, given my

ability to be more involved and take her out at times, and also the stress

it would be on my mom if she had to move. But she also said that there is a

very very good dementia unit in the county where the residents have private

rooms, their environment is strictly controlled to prevent over-stimulation

or triggers to their outbursts or whatever, yet the residents have more

control over what goes on in their own rooms since there are no roommates to

consider, but said that my mom wasn't ready for that, and may never be, it's

just something to keep in mind. And she agreed that this is all probably a

medication issue. After going over her current meds, she said that there is

room to maneuver and the first thing she would do would be to increase her

seroquel, try that for a while, and if that didn't work she would tweak

something else. (That impressed me - low and slow with LBDers.)

My mom's nurse then came in with a broken CD case with blood on it. My mom

had used it to cut her neck...that changed everything...

Long story short, she's back down at Gratiot in the psych unit again

tonight. Both and I spoke with them at length about my mom...they

also had her file there from last time while we were talking while my mom's

nurse called the ambulance, and the doctor will be calling me back in the

morning. The intake nurse also agrees that my mom needs her meds tweaked

and that may take care of her problems for the time being...

In the end, told me that she didn't really want my mom to leave, that

everyone loves her there and she's part of the family, but that she had to

think of the other residents. It feels like a battle has been won (if not

the war) but I am fully satisfied that they and I are all on the same team,

and not at odds. We ALL want what is best for her, and we all now agree -

doctor, administrator, DON, and me - that the best for her is to stay there

as long as they can give her the same level of care. They do have many

dementia patients there, but if at some point this dementia ward that

was talking about (and said she could still be her doctor there, if I

wanted her to be) will be the better option for her, I will be open to that

as well. Just to tell you what kind of people they are, we all hugged at

the end. These are dear and wonderful caring people...

Tonight I am thoroughly exhausted but I know my mom is once again getting

help from the place that helped her so much last spring - this is the place

that literally gave her back to me, and I told the intake nurse at Gratiot

that, in those exact words. I also said, " I hope that you still have that

magic wand that you used before, because she needs it again, even worse

now. "

OK, this is long enough. I will be going to King's tomorrow to go through

my mom's things, as the last time she was here she was picking up a lot of

my belongings, proclaiming them as hers and giving me long explanations

about their history and her attachment to them...and after she left I

noticed that most were missing. This is a new behavior (and one I was

actually a bit amused about), but I'll reclaim my stuff, or what I can find

of it, tomorrow, and also go through her clothes, read her journal for more

insight, see what she needs, bring home her summer clothes, and so forth.

Thanks for listening, thanks for your support, thanks for everything, you

are truly a Godsend here.

His,

Sherry

www.owly.net

daughter of , (mis?)diagnosed with AD in 2005, descent slowed by

Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile from my

house. We're learning to live with Lewy...

December 10, 2008

Sherry, FWIW, my Mom was a two shower a day person her entire life. However

the last year with the LBD changed that dramatically. It took a while for

us to figure out that showering was very hard for her and it frightened her.

She couldn't do it herself anymore but she was unable to ask for help or to

recognize her fears.

I don't know if that's what is going on with your Mom, but it may be.

Gladys

-- At King's today