Re: I've had it!!!!!!

June 25, 2004

Gwen,

first and most importantly biggggggggggggg huggggggggg for you,

and here, i will share my favorite kingsize chocolate bar, symphony with

toffee chips, just melts in the mouth, mmmmmmmm

i can also relate with the nh meetings, becuase i had run in with baptist

skilled nursing when i asked to be present at all meetings concerning my dad,

this was the day after his transfer to sn unit. well i was told the first

meeting would be wed 5 days away, and that would be the goal setting meeting, i

hit

the ceiling the floor, the walls everything. well not literally. but my

mood did, and it was very evident. i told them that goals should have been set

prior to my dads admission. i was also told that it took a team to dismiss him,

not just the doctors ok, but if pt/ot/rec ther/didnt feel it was right then

he was gonna stay. so i said well i tell you waht this sounds more like a

prison camp, and we are prisoners at your holy descretaion. i said we made a

mistake, i want dr on the phone now, i am taking him home. within minutes i had

supervisors everyone nearby. they all listened to me rant and rave, not that i

gave them a choice. but i told them, i am to be attending all of dads medical

meetings, and i expect pt to start that afternoon, that 24 hours in the unti

was plenty of time to have goals set, which should have been done at discharge,

etc. well fortunately they listened, they realized i have a temper and wasnt

afraid of utilizing it to my and dads advantage. we were discharged 8 days

later as dad had plateaued in his improving.

i am glad that you got to vent and hopefully things will improve for you and

others in teh nh, and i hope you can bring him home soon. my dad is 6'4 230

pounds, i am 5'6 i now after losing 30 pounds weigh 240 but due to my own

medical problems ihave a 10 lb weight restriciton. so falls are very hard for

us

to deal with. the sn unit, concentrated on helping dad learn how to roll to

get up. it takes time, but i have found that if i am caught watching him, he

gets more agitated and cant do it, if he thinks he is on his own, he can do, one

time it took 2 hours, usually about 30-45 minutes. dad still bathes, tho i

know he is not as thorough as i would like him to be. but i just recieved the

persconal care item that jim suggested, it is like a tarzan drape with velcro

allowing easy access for cleaning and yet gives patient his privacy too. that

might be something you should think about getting. we also spent about $500

in making the bathroom, handciapped friendly, unfortunately house was built in

1957 so bathroom door is 4 inches to narrow for walkers etc. so since dad is

still able to do some walking with aids, we put a rail right inside the door,

up to the tub, where opposite the tub is the sink, so he can hold on to the

sink, then the toilet, where on teh wall we have a bar up at an angle. angle

because you need a lower place to push up to get up and higher to hold on to as

you sit down. and in the tub we have a bar on both small walls and a longer

one on the main wall. and due to the fact that dad is so tall and

naturallyraches u p to the shower curtain rod for support, i had it replaced

with a

galvanized steel rod attached at studs so now it can support his entire weight.

you

may consider calling a plumber and putting timers or something on the faucets

to keep the overflow from happening again. like they do in public bathrooms.

as for decieving your dad, you deceived the diseased part of the brain, you

took care of your dad, i am learning the difference myself. dad has been very

hateful to me, many times, including in his will which is in process of being

drawn up. at times i am so angry but it makes me sicker so i have to vent

it out, you need to as well. dont be upset that you tricked him, you did what

you thought was best, and that is that. dont beat yourself up for loving and

caring and wanting him safe and as healthy as can be.

my dad also only gets out of bed at home to go to restroom, or go to doctor,

but now that he is on exelon he practices getting up the day before he goes to

doctor, that is the first time he has ever done that. i also ordered him

one of those portable lift seats to see if that will help him get up easier,

dont know if i can recommmend that yet, we just got it yesterday.

good luck gwen, feel free to share chocolate and woes anytime!!!

sharon m

June 25, 2004

Gwen, you have every right to be concerned. I'd write everything down in

point form and demand to have a meeting! Also, I'd write the administrator

if you can't meet him/her in person.

Hang in there.

Courage

I've had it!!!!!!

>Well folks,

>I think that I have had it with the total lack of communication if the

elder care system! Today I went into the nursing home around 3:30 after dad

would be finished with his PT. I stopped in to see the P therapist to give

her information on LBD. She tells me that dad's care plan meeting was this

afternoon! I know I had a shocked look on my face. If I hadn't stopped in

there, I would never have known about the meeting!

>I have been waiting for them to tell me when this meeting would take place.

I have talked to the RNs and PT many times. I have given them LBD info and

like I said in another email I've told them that I have been living with him

and caring for him for 2 years. Don't ask him questions about his health,

he's not going to tell you the truth. I have given them the POA and health

care proxy and how could they tell someone with dementia that this meeting

was taking place and think that he was going to tell me. Really! I can't

believe that they would have dad in the meeting with " no representation " for

him. Well by this time the people I needed to talk to had left but just

wait until the morning!! I am going to have an earful for them.

>I stayed with dad until about 7 p.m. After I left I decided that I needed

to go to the grocery store for some CHOCOLATE ice cream. I was going

through the grocery store and who do I run into? The man who staffs the

local Alz. assoc. office. I knew who he was from going to several of their

seminars. I introduced my self and talked for a few minutes. When I said

who I was, he knew who I was because we had just talked on Mon. He was so

surprized that they could hold the meeting and that I wasn't there. We also

talked a few minutes about the nh and some of the things that I have

observed there. He has observed some things also.

>

>What led up to all of this - Over the last 2 months dad has been very

argumentative and telling me I was stupid etc. etc. Before that he had been

fairly calm although very stubborn which is not new.

>One day about 2 weeks ago dad fell and and it took about 7 hours before he

could get up. When this happens he doesn't want me to help him and then I

go this barrage of go away, leave me alone, I'll do it my self etc......

After he calms down, I try sitting on the floor next to him and try to guide

how to move to get up, but that didn't work either. Most of dad's problem

solving skills are gone. Dad was down to about 135 lbs. when I first came

to live with him but through having regular meals and junk food, he is up to

170 lbs. For years that was his normal weight. I weigh about 120 lbs and

am about 5 ft 1 in. There is no way that I am going to get Dad off of the

floor. Anyway after about 7 hours of stuggling to get up, about 1 a.m., he

finally did. The smell was pretty ripe because he had had an accident while

struggling to lift his weight. I wanted to get him cleaned up and went

through the barrage again. I left him alone for a while and saw that he was

trying to get cleaned up. By about 3 a.m. I knew he was tiring and it might

be safe for me to sleep for a while. I was in the main bathroom that I use

brushing my teeth and could hear the water running in Dad's bathroom and

knew that he was washing. I waited a few minutes, walked past his bedroom

and found him in bed. The water was still running! Went into his bathroom

and water was running everywhere as he had pulled the plunger to fill the

sink! I turned off the water, went back to my room to take off pj's and put

shorts back on so I could go clean up all the water all over the floor etc.

>Well, the next day, I was starting to get some dinner, and went back to

Dad's room to ask him something and there he is naked coming from the

bathroom. He had had another accident and was just going to go back to bed

(still dirty with his water was running again). I said let's get you

cleaned up. Well, the barrage started again and I saw his face get white

and his shaky legs get really shaky and just collapse. I thought, oh no, we

ARE NOT going through this again tonight. I told him that I was going to

call 911, which I did. I told them that dad had fallen and I didn't think

that he was seriously hurt but I wanted him taken to the hospital to get

checked out. His general condition had changed lately which I know is part

of the disease, but thought that something else might be going on also. I

have also learned that because I can't get him to go to the dr. when an

opportunity like this presents itself, I'd better act. I hate to deceive

him, but he really leaves me no choice. I talked the ER dr. into admitting

him and hoping to get him checked out. I also wrote a letter for his

primary to talk to him and tell him what he has and that he cannot do this

by ourselves anymore. His primary has never told him what is really wrong

and he refuses to see other doctors. Well, after his dr. saw him in the

morning, dad was in the hospital from Tues. night in ER until Mon. morning.

Luckily dad's dr. called in the neuro and they did a cat scan and thought it

was NPH. On Mon. morning dad was transferred to the nh. All the while dad

has been raising a stink saying that there is nothing wrong with him and he

wants to go home. I hated to see him like this and it is even worse in the

nh. He really needs the PT though and every day they are giving him both

occupational therapy and physical therapy. He is so weak since at home he

refuses to get out of bed except to go to the bathroom.

>I just hate all of this but maybe I can do something with him like take him

home with me.

>

>Sorry this has gotten so long. I think I need to go get my chocolate and

prepare for the morning.

>Gwen

>

June 25, 2004

Hi

My name is Jacqui. I just read you account on your Dad. I also had a fit at

one of Mom's doctors. He was treating her like dirt and we switched. She is

also on Exelon and it had to be increased to 4.5 mg twice a day. She takes

Sequel which is 50 mg a day. The new doctor took her off Requip because it

wasn't doing any good. We also have the bathroom redone with safety equip. The

lift chair works great. She can't stand up from a regular chair and this one

lifts her almost to a standing position. The baby monitor works for me because

of my situation, but I can't see why it wouldn't work for some of you that

live with your loved ones. Put in their room and the receiver can be carried

around. You will be able to hear any disturbaning sounds and go see before

things get too out of hand. Let's face it we are dealing with adults with

childlike minds.

If I sound a little harsh today, forgive me. Mom had one of her bad days and

I am tired. Its only 7:00 and I have a long way to go before she settles

down. Thanks for listening.

Jacqui

June 25, 2004

Thanks Courage, that is a good idea. When I talked to the social worker this

morning he did say that they had an open door policy and call or stop by anytime

I am there. I told him that I am there at least once a day. Actually I found

that this was my goof. I think I am starting to loose it. When dad first

arrived I signed all of the paperwork and was given a folder of papers. When I

got to dad's room he was given another folder of papers. I know that I read

most of the papers. While looking for the name and number of the social worker,

I found a paper with the meeting date on it. To borrow Jan's phrase - shit! I

am keeping a list of other things that I see though. From what I have heard

around town is this nh has quite a turnover with administration and management.

Hope that you are doing better and glad to see you posting occassionally.

Take care,

Gwen