forced assisted living

[harley]

what would you say to your family if they wanted to put you in assisted living, not giving you any options?

[Stitcher]

I would first insist that they fully and completely explain to me why they want to do this. I would try very hard to listen with my ears and heart, and not my head and emotions.

I would hope that they had not made the decision lightly, but had held my personal safely and needs first. Not their issues with my being unable to tolerate me being in their lives any longer.

I have been having my own challenges lately...hard time paying my bills correctly and on time (always a month of two late), poor spending choices, driving issues, not keeping my home as clean as I should (wishing I could afford to pay someone to do it for me as my neighbor is able to do), see my in own cognitive decline escalating and knowing my family can see this happening. I will stop there.

I don't know which is worse, to not be able to see the decline or to see it and know I can't do anything about it.

[stevem53]

If I was still able to take care of myself, Id tell them to go pound tar

[vlhperry]

My husband is having a harder and harder time accomodating my quirky behaivior. He wants to join groups to play with and I am alone all the time. I forget to take my pills on time, am only able to clean one room at a time and then am totally out of breath and will sleep for 5 hours. I recently had a biopsy of my thyroid gland as the endocrinologist I saw found a marble sized lump in it. The stress of waiting is very hard when you are alone as much as I am.

My husband tries hard, but when he snarls at me like he did the other night, I get frightened. I have even suggested we start looking for a nursing home but her won't hear of it. He still expects me to shovel out the driveway even when I ask him to help me. He also lies about finances.

Caroline, I am with you. He feels by placing me in a nursing home he is failing me as a caretaker. As far as I am concerned, if he is finding it too confining to spend time with me or help with simple household chores, I would rather be somewhere where I can get help when I need it.

I believe I would look at it as an opportunity to mingle with others like myself and meet new friends. But I must admit, I am also very bad with changes in my routine. And the thought of a roommate is not appealing. I like my personal space.

Is this and issue for you or are you considering it? If your family is forcing you to do that you are not ready for, I would contact a County Social worker in your area to find out what your rights are or if it is actually within your power to stop them or reason with them. I am so sorry you are going through such a difficult time. My prayers are with you.

Love,
Vicky

[Stitcher]

I hear you Steve, but some of us know and can see this as a close-to-home possibility. So, I have taken Harley's post a bit more seriously.

[vertigo]

Hello friends,-- what kind of life are we expecting to live as time goes bye and our mind has become a stranger ?
Today they are searching for a 61 year old woman who are missing. They have found her car on a parking place in the Forrest, lots of snow and wind the last two days, - I was thinking, yes - that would be nice , if I should" loose myself ", walk out in the soft snow and be in the nature.
This is not a sad thing for me, the worst would be to sit in a chair ,feeling lonely, confused, forgotten and a burden. I know this is depressive thinking , but I love to be alive and I do not trust my children, they don`t understand my life and my suffering with PD.

I feel sorry for all of you, and I am glad that we still can have good times and sing, dance and have a glass of beer with our friends.

Annelise

[imark3000]

Hello friends,-- what kind of life are we expecting to live as time goes bye and our mind has become a stranger ?
Today they are searching for a 61 year old woman who are missing. They have found her car on a parking place in the Forrest, lots of snow and wind the last two days, - I was thinking, yes - that would be nice , if I should" loose myself ", walk out in the soft snow and be in the nature.
This is not a sad thing for me, the worst would be to sit in a chair ,feeling lonely, confused, forgotten and a burden. I know this is depressive thinking , but I love to be alive and I do not trust my children, they don`t understand my life and my suffering with PD.

I feel sorry for all of you, and I am glad that we still can have good times and sing, dance and have a glass of beer with our friends.

Annelise
... and God will take care for tomorrow.

[Thelma]

Well that is a problem for us all and no one is going to take care of it but ourselves less we lose our voice. Sometimes I wish someone else cared enough about me to make that decision and let me off of the hook as deserting anyone.

It's a lot easier to be pushed than make a decision to leave.

[kman]

Dharley,

I have pondered this question,you like how that sounds?:eek::eek:, anyway more to the point. I guess i feel that i was not given the choice of having yopd however our caregivers do. i do not know who in your family is comming to this however if it was my children and i do have two and yes i may coe to this same situation...I would take previous advice and listen to reasons..and as i tell my children listen with both ears.:eek:. Life as we know is hard for no reason at all and if i could make my caregivers life easier i would.

I may not go to a home....try home care or pack up grab sails head for open water..not really sure....i do believe with faith and understanding no matter what happens it will work out..you never know it may help to ease burden and allow your family to grow closer.. i also belive everyone carries something we just happen to carry Parkinson's, and i'm sure you have gained much wisdom because of this...use it to help not only your case,but to help your care givers.

I'm sorry if i rambled...i do that sometimes...my thoughts and prayers are with you as move through this.

Be well
Eric aka kman

[reverett123]

what would you say to your family if they wanted to put you in assisted living, not giving you any options?

...I would call my lawyer and make it clear that if he or she didn't hear from me on a defined schedule that he should start looking.

Then I would sit down and think of my options, assuming that I had some. Is it possible that outside help could be an approach? Could you make it if you were living alone with such help?

I have long maintained to my friends and spouse that if they one day find me dead lying in my kitchen floor in a puddle of my own filth that they should give a great shout of joy as that is my desired ending. Each of us certainly has their own vision, of course. But we should make those decisions ourselves to the extent possible.

[Curious]

:hug:

harley, do you know what kind of assisted living they are talking about?

here there are graduated assisted living, depending on the amount of of care you need or want. or don't want. many of these are really adult living communities. many states have banned them because it was descriminating against those with children. so they add the amenities of care and don't have to allow children.

there are some that are like duplexes or quad houses. high rise apartment/townhouses with garages.

they have full everything...kitchens, your own washer and dryer, either balconies or small porches with yards.

but they also offer a dining room if you don't want to cook. have some type of medcial staff on duty. the amount of care depends on the what is needed. you can keep you indepenance.

i had a very close friend move in to one. after 5 years she decided she didn't want to drive anymore and took the van with other residents to run her errands. she enjoyed not cooking all the time too.

she is older than you. i know the situation is different.

but if they are looking as more of a nursing type of facilty, there are other alternatives.

you have rights harley. we are here to help. i wish i could do more.

:hug:

[Stitcher]

I was not taking this subject lightly at all. I hope that anyone reading my reply above can see that.

As stated above, yes it is important to discuss this topic as a family before the word "forced" would come into the conversation.

I take my leave of NeuroTalk.

[Curious]

:hug: i did carolyn.

this is a very tough and sensitive subject. for all.

[ol'cs]

Artist: Jim Morrison
Song: The End

This is the end, beautiful friend
This is the end, my only friend
The end of our elaborate plans
The end of ev'rything that stands
The end

No safety or surprise
The end
I'll never look into your eyes again

Can you picture what will be
So limitless and free
Desperately in need of
some strangers hand
In a desperate land

Lost in a Roman wilderness of pain
And all the children are insane
All the children are insane
Waiting for the summer rain
There's danger on the edge of town
Ride the king's highway
Weird scenes inside the goldmine
Ride the highway West baby

Ride the snake
Ride the snake
To the lake
To the lake

The ancient lake baby
The snake is long
Seven miles
Ride the snake

He's old
And his skin is cold
The west is the best
The west is the best
Get here and we'll do the rest

The blue bus is calling us
The blue bus is calling us
Driver, where you taking us?

The killer awoke before dawn
He put his boots on
He took a face from the ancient gallery
And he walked on down the hall

He went into the room where his sister lived
And then he paid a visit to his brother
And then he walked on down the hall
And he came to a door
And he looked inside
Father?
Yes son
I want to kill you
Mother, I want to.............

Come on, baby, take a chance with us
Come on, baby, take a chance with us
Come on, baby, take a chance with us
And meet me at the back of the blue bus

This is the end, beautiful friend
This is the end, my only friend
The end

It hurts to set you free
But you'll never follow me

The end of laughter and soft lies
The end of nights we tried to die

This is the end

[shiney sue]

Some Assited living places will aloow you to stay from a weekend to
a month,this is something you may want to try. But either way I
hope it can be your way,good luck and good care to all. Assited
living can be expensive a lot of states are working hope for home
heath care..Hugs Sue

[reverett123]

a bit more positive-

"And in the end

The love you take

Is equal to the love you make."

Hang in there harley



Artist: Jim Morrison
Song: The End

This is the end, beautiful friend
This is the end, my only friend
The end of our elaborate plans
The end of ev'rything that stands
The end

No safety or surprise
The end
I'll never look into your eyes again

Can you picture what will be
So limitless and free
Desperately in need of
some strangers hand
In a desperate land

Lost in a Roman wilderness of pain
And all the children are insane
All the children are insane
Waiting for the summer rain
There's danger on the edge of town
Ride the king's highway
Weird scenes inside the goldmine
Ride the highway West baby

Ride the snake
Ride the snake
To the lake
To the lake

The ancient lake baby
The snake is long
Seven miles
Ride the snake

He's old
And his skin is cold
The west is the best
The west is the best
Get here and we'll do the rest

The blue bus is calling us
The blue bus is calling us
Driver, where you taking us?

The killer awoke before dawn
He put his boots on
He took a face from the ancient gallery
And he walked on down the hall

He went into the room where his sister lived
And then he paid a visit to his brother
And then he walked on down the hall
And he came to a door
And he looked inside
Father?
Yes son
I want to kill you
Mother, I want to.............

Come on, baby, take a chance with us
Come on, baby, take a chance with us
Come on, baby, take a chance with us
And meet me at the back of the blue bus

This is the end, beautiful friend
This is the end, my only friend
The end

It hurts to set you free
But you'll never follow me

The end of laughter and soft lies
The end of nights we tried to die

This is the end

[harley]

Which path to be chosen when the choice lay between the struggle of already judgemental opinions stemming from exhausted minds, or the narrower path of undiscovered awakenings which has not been experienced enough of this hard life to place an honest value on it?

each window offers a different view. one familiar, yet is the the residue so built up on the the pane that it merely needs the cleansings from a wet rag full of tears and buffering of a dry rag full of wisdom to show the truth of the reality on the other side? and am i ready for the acceptance of this reality?

the other view shows a side of myself that i have hidden from my own view, yet need to awaken and recapture so i can redirect the time left of my days. the value of precious moments are so much more evident in this view that it has become necessary to take the needed effort upon myself to discipline my independent desires and accept the uninevatable.

but, not yet.

i still am strong, i still am loud, and i still will fight. with each and every ounce of who i know i am.. i will fight.

it is not time.. not yet