Re: LBD...the beginning of our journey

July 14, 2008

peggy,

teh most important thing to do FIRST and foremost is to get ALL legal paperwork

done NOW, lbd changes are so quickand they may /maynot bounce back so your

lawyer has to see your mother in a good mental state to represent her will and

wishes. do not put off even on week. it took 6 weeks to get dads will done and

POA power of atty and medical power of atty done, but since the lawyer talked to

daddy for a long time eventhough he was no longer in sound mind he knew that

daddy had already expressed his wishes .

also i am the only child, so i got the brunt of all his anger and frustattion,

but hospice nurse told me to take it as a compliment not an insult to look at it

from dads point of view, he is scared he doesnt understand what is going on and

the fluctuation of cognition really throws him off. but somewhere deep down he

knows he loves me and i love him and we are family and will be together no

matter what and that the usaul saying we always hurt the ones we lvoe the most,

hurt them the most. and that he was able to show his fears and insecurites with

me instead of anyone else so that meant he trusted me. it was hard to remember

but it helped sometiemes. hugs. sharon

Subject: LBD...the beginning of our journey

To: LBDcaregivers

Date: Monday, July 14, 2008, 2:52 PM

I am so grateful that this group has been formed. This past week my 77

year old mother has been diagnosed with " possible " LBD. There are so

many questions in my mind that my head is spinning.

At first I was in a stage of denial. I could not imagine that my

mother who always had such a good memory for figures and numbers could

lose the ability to do the simple cognitive tasks that were required

by her geriatric/psychiatr ist.

I also feel such guilt because I moved out of the house close to three

years ago when she started misplacing things and accusing my boyfriend

of taking them. However I was still working at the time as a full-time

teacher and I just couldn't take the relentless accusations about

" petty " articles going missing and the fact that she thought he was

such a " bad " person. In actual fact, he was very understanding and has

and had been very kind to her. However there was no reasoning with

her. She was beginning to become more suspicious as time passed and

even had the locks on the doors changed three or four times, was

threatening to call the police, and generally picking at me all the

time. My job was very demanding and this was beginning to take it's

toll on me both physically and mentally.At that time I suspected

Alzheimer's but my mother denied having any mental problems.In fact,

for many years my mother and I were not getting along very well. It

seems that no matter what I did for her which was considerable would

ever put me on the same plane as my two brothers.

My younger single brother moved back home two years ago.He left a very

good job because he said it was so stressful and now is a recovering

alcoholic and suffering from severe depression for which he refuses to

seek help.My only consolation here is that my mother is no longer

living alone. The accusations continued about things going missing but

over time , the blame shifted from my boyfriend to me. I spent many

nights crying... thinking that my own mother would think that I was

stealing from her.Although she was happy to have my brother home and

everything was going along well at first, I noticed that when I

visited, the house was becoming so cluttered and in general it became

a complete mess.So I tried to spend a couple of nights at home every

few weeks and try to clean up especially the kitchen and dining area .

This became more discouraging because every time I went back things

would be again in complete disarray and I would have to start over.

My brother started to become more reclusive and didn't want to do

anything more than watch TV and move from chair to sofa. He stopped

cooking and began to make trips to town to buy fast food like donairs

, hamburgers, and pizza.My mother began to complain that he didn't

want to anything around the house and her trips to town were too quick

and she never had time to look around to shop. He just wanted to pick

up groceries and return home as quickly as possible.

I tried to take her to town whenever possible and gave her all the

time she wanted to look around. She told me how nice it was not to

have to rush. She stopped accusing me of taking missing objects but

within the last year began to have hallucinations that there were

people in the house particularly an old woman who was taking and

hiding her things. She thought that people on TV were really there and

she was talking back to the TV.This is when I contacted her family

doctor with a detailed letter about my observations.

Her doctor saw her on Boxing Day 2007 and did a cognitive test on her.

Her score was 24/30.She was referred to a geriatric psychiatrist after

a wait of four months in April of 2008. At this point she scored a bit

lower on a cognitive test and was to see this doctor again at the end

of May.She gave me an envelop with lots of information on Alzheimer's

disease from the Alzheimer Society of Canada.

I received a call from her two weeks later telling me that she had

spoken to another doctor at the mental health clinic and recommended

that she be referred to her. I agreed but was shocked to hear that she

couldn't get an appointment until August 21st. I called that doctor's

office and asked them to let me know of any cancellations and I would

be ready at short notice to take my mother in.Thankfully, after two

phone calls the appointment was moved up to July 10th.

The nurse did a cognitive test again and this time her score was 19/30

so clearly there was more of a decline.She made recommendations about

power of attorney,was to have an occupational therapist visit my

mother's home to assess her abilities, gave me a referral number for

home care, and recommended that I put my mother's name on a waiting

list for a nursing home. This is because there is a two year waiting

list and if she needed to be placed before then they could put her in

any available space in the province. This is a quandary for me because

if I do this now and in two years she is still able to live at home

with assistance her name goes to the bottom of the list again!

The last doctor did not mention Parkinson's in her diagnosis and I

don't know if the two diseases occur together or if it's possible to

have LBD alone.I have done a lot of reading on LBD and the best site I

have found is

http://www.mayoclin ic.com/print/ lewy-body- dementia/ DS00795/METHOD=

print & DSECTION= all

So my next task is to get my mother on a good day and talk this over

with her to find out her wishes.I just feel so overwhelmed to get all

this thrown at me at once.

July 14, 2008

Dear I hear you loud and clear. Because there is always a waiting List. This

is one reason Don will be going to where his daughter works. A few string

pulled in the right places made it possible.

I feel for you very much so. You Mom is in deep decline, and can only go

into a nursing home if she goes to the hospital for three days, then to rehab.

If they consider her fit, then it's back to her home. They make a person wait

until they are at deaths door, and suffer a lot in the mean time, not to

mention what it does to the family. It stinks.

Sorry for your plight. I was overwhelmed at first, so much to learn and so

much coming at me so fast, but now with a little more knowledge I feel better,

but I don't have the strength.

Problems, problems. And yes, my step mother accused me of stealing, and it

really hurt, so I know how you feel.

Lift your heart dear, this too shall pass,

Love a lot, and always remember it is just the disease talking,

Imogene

In a message dated 7/14/2008 9:59:54 AM Central Daylight Time,