Re: Dena & Midge

[Guest guest]

Don't be too proud to visit a therapist. I go monthly and it sure

does help to vent, vent, vent! I'm sure my SO gets tired of my woes -

and it's nice to have an hour to vent. Although, honestly, this board

has helped me more than the therapist...

PS LOL - MIDGE - TYPE AWAY IN ALL CAPS - WE HEAR YOU LOUD AND CLEAR,

AND LOVE YOU FOR IT!! :)

>

> > Hi Everyone,

> >

> > I have been fairly absent lately from the group.

> > I have been busy trying hard to clean out my

> > mother's house and make room in my own for all the

> > treasured things I just can't let go of. I have

> > lots to tell though, so bear with me...

> >

> > After the Washington trip, I came home excited

> > about something that happened there. I met Dr.

> > Boeve at lunch break and was talking about mom to

> > him. I expressed my frustration over the fact that

> > her psychiatrist had all but given up on her, the

> > nursing home doctor sees her on Mondays but always

> > when I can't be there, and when I asked for an

> > appointment at his office, he replied " well, that

> > won't do any good, because your mom's chart is

> > here. " I attempted to meet with him once, by taking

> > the afternoon off to " wait " for him. He usually

> > comes sometime after 3 pm but I have to be back at

> > work for 3:30 pm so I replaced myself and waited.

> > At about 4:30 pm I asked again at the nurses station

> > about the doctor and was then told " oh, I guess he

> > isn't coming today... " ARRRGH! Anyway, I

> > digress...Dr. Boeve asked about mom's neurologist

> > and what meds she was on etc. I told him she has

> > never seen a neurologist, just the psychiatrist who

> > diagnosed her. I told him that I had tried

> > several times to convince the psychiatrist to try

> > her on memantine(Namenda (US) Ebixa (Canada). The

> > psychiatrist had said that the only studies that had

> > been done were by the drug company and they were

> > biased. I tried to tell him that many people on

> > this board had had success but it seemed to fall on

> > deaf ears...Dr.Boeve gave me the name of someone

> > here in Toronto. His name is Dr.Tang-Wai.

> >

> > I was excited once again that someone might help

> > mom. Her words have been so jumbled up that she can

> > hardly be understood anymore. She makes up words

> > that clearly represent something to her, but it is a

> > mystery to everyone listening. She is obviously

> > frustrated when the right word wont come out, and

> > knows that is not what she meant to say...I kept my

> > fingers crossed that this might be something

> > positive but at the same time I was frightened that

> > to change things could make matters worse.

> > What if it brings her back to " reality " but she is

> > then terribly unhappy in the nursing home, just

> > sitting there all day? What if she becomes sick or

> > aggressive or angry toward me? Well, I have thought

> > long and hard and realized that last year I thought

> > she would be gone in three months what with the bed

> > sore and all...now, I believe that mom could last 2

> > or 3 years or more and if I can give her back even

> > one year, or a few months of interaction and quality

> > of life it would be worth it. I can't be selfish

> > and take the easy way, just because I don't want to

> > feel bad. I have to risk it, and then if necessary

> > fight with all my might to have the drug stopped if

> > bad things happen. If good things happen, well then

> > it will all be worth whatever extra time it gives

> > her to have quality of life.

> >

> > I contacted Dr. Tang-Wai and tried to get medical

> > records from the psychiatrist. Their office

> > wouldn't send them without a written request from

> > Dr. Tang-Wai. I contacted him and he said he would

> > wait until we met with him to decide what was

> > needed. Sigh. Everything is such a battle. Anyway,

> > I took mom to see him. The appointment was made for

> > about two weeks after I had contacted him. Wow! that

> > was sure fast! Our appointment was for 9 am and we

> > didn't leave there until 11:40 pm. We missed our

> > wheeltrans and that was another catastrophe (they

> > seem to follow me) but we managed to get back after

> > hiring a wheelchair taxi. Dr. Tang-Wai felt that

> > there could be several things at work with mom. He

> > thinks she may have shown beginning signs of Alz.

> > and then LBD. She had brain surgery in 1970 and he

> > also thought that that could be something that

> > caused damage too. The parkinson side was hard for

> > him to evaluate as mom is permanently in the

> > wheelchair and is contracted

> > quite badly all over. He tested her but it was

> > hard because her speech problem was so predominant.

> > He said that Lewy patients don't usually have that

> > problem to that extent (which is why he was thinking

> > Alz.) I didn't say it but felt that that

> > contradicted what many people on here have indicated

> > with loved ones (ie. word salad etc). Am I correct,

> > does anyone else have trouble with their loved one

> > and their speech?

> >

> > Anyway, the end result was that he felt she could

> > be taken off Sinemet since he didn't feel it was

> > helping her (and also said that the way it was being

> > prescribed--once in the morning and once at night

> > was useless as it works in 20 min or so and wears

> > off after 4 hours). He said that this may lessen

> > the dementia as a side effect of this drug causes

> > that. He then said that he would titre down the

> > seroquel as her hallucinations are not scary ones

> > and that it might help to remove it (she probably

> > wont be as sleepy) and after running several blood

> > tests to eliminate other things such as Thyroid

> > levels etc. He would recommend she start Memantine.

> > That was March 29. We first had to wait for the

> > written report to the NH doctor. It arrived on a

> > Monday, after the doctor had been and gone. The

> > next week he was on holidays, and then there was

> > Easter and finally this past Monday he was in and

> > read the chart (and I assume he saw mom too). I

> > asked yesterday and was told that

> > they had reduced the Sinemet and will discontinue

> > it next week. They have removed the morning

> > Seroquel, not sure if they plan on continuing the

> > night time one or not...I assume but am not sure

> > when they will start the Memantine. Everything

> > takes so long, but I don't know if I would have

> > stopped the seroquel and reduced the sinemet at the

> > same time...but I guess we will soon see what

> > happens...

> >

> > Yesterday, I went to see mom after lunch. She was

> > pretty alert considering she usually goes to bed

> > right after lunch. I was talking to my friend Mil

> > who came with me to visit mom, and was telling her

> > that I had cleared out some of my clothes and gave

> > them to charity. My mom suddenly piped up and said

> > that " you know I don't want you to get rid of my...I

> > NEED those...don't take my...she made up words and

> > left ones out but it was a clear message to

> > me...DON'T TAKE MY THINGS AND GIVE THEM AWAY!!! (

> > It is sad that I am doing just that, but the more I

> > go through, the more I realize that it is time and

> > she will never know that.) I reassured her and she

> > settled down again. I explained I was talking about

> > MY things...

> >

> > Anyway, I will be closely watching mom to see any

> > changes...good or bad. I hope good. Please pray

> > for her and for me. I am so afraid to make a

> > decision that will result in a bad outcome...

> >

> > I love you all out there in Lewyville fighting the

> > good fight...stay strong. I have been on the roller

> > coaster long enough to know that there are hills to

> > climb and slide down again...I hope I am on the

> > glide down and not the struggle up...keep your

> > fingers crossed!

> >

> > Kath in Toronto

> >

> > Daughter of Maggie, dx in Oct 2002, broke hip in

> > Jan 05 and living in NH since Feb. 05. Permanently

> > in wheelchair due to lack of rehab in first NH.

> > Healing nasty bedsore from first NH over a year now

> > but getting smaller. NH now is better.

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

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