Re: Something sweet

[Guest guest]

Sherry, I am so happy for your mom, and for you to be able to witness their

love and

this new opportunity for them to spend time in love. What a feel good story. I

am a huge

proponent of life after Lewy. This proves there can be increased quality of

life during

Lewy. Kudos to you for all you did to make this upswing for your mom possible.

>

> For those of you who remember when I first joined, the desperate black

> depression and obsession with suicide that my mom went through, she was

> living in hell 24/7 until they got her off her old meds and onto LBD

> appropriate meds and dosages...the change in her has been unbelievable.

> I've mentioned that it's almost like all the worst parts of have gone,

> and all that's left is the best of her. Her obsessions, control issues,

> compulsions, etc. are all gone. She enjoys life. She loves the other

> people at King's, and lives to help them as well as visit with them. She

> loves the nursing staff. She is the hug giver. The nursing staff have told

> me that they love her so much, they couldn't stand it if she wasn't there

> anymore. She has told me numerous times over the last few weeks that she

> loves her new home and all the people around her, that there's always

> someone to talk to, and always something to do, she never has to get bored.

> She's very active, ambulatory of course, very steady and quick on her feet

> and coordinated (moreso than me) and no PD signs. Her ST memory doesn't

> exist anymore but she's so sweet...I was in such desperation for her just a

> few short months ago, and now I just want to spend all my time with her. We

> go out all the time, several times a week, and talk and laugh and always

> have a good time. This is the mom that I've never really known; my entire

> life she's been on drugs of one sort or another (including alcohol), has

> been tense and controlling more often than not...

>

> Anyway, this mom is relaxed and fun, with no obsessions - I've never met her

> before but I love her to pieces. She's almost childlike in her delight of

> life. I wish she could live out the rest of her life this way...

>

> OK, now I'm getting to the sweet part . For quite a few years my mom has

> had a friend named . After my stepdad died ( lived with them and

> helped with Ed's care), it was only a matter of weeks before moved into

> my mom's bedroom, and during the last few years he cared for her, took her

> to the doctor, handled her LBD-caused delusions and paranoias, kept her

> condition private from her family at her request (she could NEVER show

> weakness!) - he cooked for her, shopped for her, cleaned her house, bought

> her gifts, make lovely fires in her fireplace on cold nights, and did

> everything for her. He loved her and spoiled her and protected her from the

> harsh realities of her worsening condition (without knowing what was wrong

> with her, except it was some sort of dementia) as well as the world outside

> of their home. When she started accusing him of affairs (after she'd sent

> him to the store for something) and stealing her things (after she'd moved

> them herself), he tolerated it. When she started calling the police on him

> he bore it...but then that one day back in April, when he couldn't take it

> anymore, and he packed up and left. Even , who adored her, had his

> limits. I spoke with him many times in the next couple of weeks, he was

> broken, devastated, in agony and so much pain over what was happening with

> my mom...the last time he saw her she was raving, out of control...then she

> called me later that day and said, " 's gone, I don't know where he is,

> but all of his things are gone...what is wrong, do you know what happened to

> him? " She went into the hospital that day...then to the nursing home...

>

> Anyway, moved downstate where his daughter lived, to try and move on.

> He got a job, was looking for a place of his own to buy...and he started to

> heal. After a few months he couldn't stand it anymore, and came back. He

> went to the home he shared with my mom - her house but their home where he'd

> lived for 10 years - the weekend of the estate sale. He was shocked and

> stunned, and just stood in the doorway and started sobbing. My sister and

> he hugged and cried together as she explained what had been going on in his

> absence. He understood, but his life, too, was being sold, their life

> together was being traded off in pieces for money...

>

> That was 2 weeks ago. We hadn't heard from him but knew that he'd gone back

> to his old job, and was living in his car. God bless him, he's part of the

> family, we all love him...it has been breaking my heart.

>

> Tonight I went to take my mom out for dinner and she was all lit up. " Guess

> who came to see me today? PAUL!!! We played my piano together, and we sat

> on the patio! At first I didn't know who he was but I felt so good when I

> looked at his face. Then he started to talk and I asked him if he was ,

> and he said yes! Sherry, I really feel so close to him, do you think that's

> ok? Was I really fond of him? He said we were very good friends... " I

> told her, " Mom, you and are in love. You were living together, and you

> and he were like honeymooners. He was always so good to you, and spoiled

> you, and took care of you, and you took care of him. You have been very

> much in love for several years. " She said, " Oh I'm SO GLAD, because he's

> coming back tomorrow and he's going to take me to see and get my hair

> done! "

>

> ( was her hairdresser for the last 20 years, but the last dozen or so

> checks my mom wrote to her had bounced, and the bank fees were in the many

> hundreds of dollars...so I haven't taken her back to because she owes

> her so much money already. I'm not sure what will do about that, but I

> won't worry about it, I have complete confidence in his ability to handle

> it.)

>

> The nurses and aides told me that they walked around holding hands most of

> the afternoon, and that it was obvious that he is very much in love with

> her. They said that they hugged and hugged, and held each other for a long

> time.

>

> I am so happy to hear this, I wish I could call but he doesn't have a

> cell phone, and I wouldn't know where to find him, but I have missed him,

> he's been a dear and important part of our family for so long, nearly a

> decade...we all love him. In fact at a care conference I'd told them that

> if ever showed up there and wanted to take her out, or they wanted time

> alone for intimacy, or whatever, that I would not only allow it (I have to

> give my permission for her to have a physical relationship, and King's will

> accomodate them), but would be so happy for my mom if ever came back

> into her life...and now, here he is!

>

> I believe that he's been coming to terms with what's going on with my mom,

> and dealing with his feelings, healing from what he had to endure 24/7 for

> all that time, how hurt he was, so much pain, and he feels things so

> deeply...and now he's wanting to be part of her life, to whatever extent it

> can be, again. That would make my mother very very happy...and today, she

> had a very very happy afternoon .

>

> Compared to just 3 short months ago when she thought there was nothing to

> live for and wanted nothing more than to die...I can't even begin to tell

> you how wonderful it is to see her happy, released from her lifelong

> obsessions and control issues, in love, and enjoying her life. Strange that

> LBD has given this to her...but we'll take it, for as long as it lasts.

>

> 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...

>