A caregiver's bill of rights

[rummy]

Three years ago I went to a support group and this was handed out. I forgot about it until I recently ran across it. and thought I'd share it with you.
Debbie

A CAREGIVER'S BILL OF RIGHTS

I have the right:

-to take care of myself. This is not an act of selfishmess. It will give me the capacity to take better care of my relative.

-to seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.

-to maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy.

-I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

-to get angry, be depressed, and express other difficult feelings occasionally.

-to reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger or depression.

-to receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.

-to take pride in what I am accoomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

-to protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

-to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.

Hope you don't mind - I'm adding the reference to this
"Caregiving: Helping an Aging Loved One" by Jo Horne, AARP Books, 1985, ISBN 0673248224
Nada

 

[connie]

Hi Debbie, and thanks. Along with Barraf's piece on guilt last week, I have now got both these post printed and dispayed by my computer.

I do feel that we all deserve a timely reminder of our own needs. Love, Connie

 

[rummy]

Hi Connie,
I also needed the reminder !!
Debbie

 

[barraf]

Bill of rights

Hello Debbie

What an excellent piece, I am printing it out and taking it to our Support Group next week.

Thank you.

Barraf

 

[Dearth]

That is excellent - I've never seen it before.

Can I ask - where did it come from originally, do you know?

Is it part of some 'policy' over there or did a group put it together?

Either way, it's an example of good old common sense and frankness which is refreshing to read.



N.

 

[rummy]

I attended an Alzheimer's org sponsered support group and they had a visiting psychologist there from the University of Oklahoma Hospital memory clinic. She lead the group and handed this out with instructions to read it from time to time. Of course, I stuck it into my memory file and forgot about it ( I think that is Freudian!)
I don't see any author or copyright printed on it. We will just call it "author unknown"

 

[Dearth]

I don't see any author or copyright printed on it. We will just call it "author unknown"

Fair do - did you get my PM by the way asking if I could copy and paste the thing to use elsewhere?



N.

 

[rummy]

Just got it and responded.

 

[Michael E]

Thats brilliant Rummy, even better than the AA prayer.....

Just about sums up what I feel .... so far...


love

Michael

 

[inmyname]

Put much more simply

" I also have a right to a life of my own "

 

[Amy]

Yes but when we love people we tend to put our own rights on the back burner, and do all we can for them. It's finding the right balance isn't it?
Amy

 

[rummy]

That is true but lately I have found myself being sucked into the AD abyss. It is all I can think about, it is all I concentrate on and I put it before everything else in my life. It is starting to effect my happiness, my work and my relationships. It is insideous inthat it creaps in gradually until you are consummed by it. I have had to take a step back to regain my perspective. Now I am putting my husband and my career first. I am much happier and it is reflecting in how I react to my Mom and now she is happy back. What goes around, comes around.
Just my perspective, I really needed to read those Bill of RIghts!
Debbie

 

[Amy]

I don't disagree Rummy. I was going to say earlier that the point that hit home to me was

I recognize the limits of my own endurance and strength.

I got it wrong two years ago, and still have trouble 'keeping a balance'.
I'm glad you feel you've regained your perspective.

Amy

 

[Rosalind]

Unlike most 'beautiful thoughts' like those gruesome 'team spirit' homilies some companies get framed and put around the place, with people rowing in eights into the sunset, I thought the Bill of Rights was spot on.

Excellent stuff. Thanks

Rosalind

 

[rummy]

I had to smile Amy, I regain that perspective and then loose it constantly ! I surely wish there was a formula for keeping my wits about me ! It does seem though that if I stay upbeat and take care of me first, Mom has better days. I hope that last !
I do have some good news too, I have finally convinced my Mom to go to a day care type program. I have looked into others that just cost too much. This is a program the Catholic church does as a community service and is FREE! I will stay with her the first couple of times and hope to wean her into staying on her own.

WOO HOO ( picture me gleefully jumping for joy),
Debbie

 

[Amy]

Is it that your mum has better days, or because you are feeling more in control you are able to deal with the not so good days better?

Amy

 

[Dearth]

I do have some good news too, I have finally convinced my Mom to go to a day care type program. I have looked into others that just cost too much. This is a program the Catholic church does as a community service and is FREE! I will stay with her the first couple of times and hope to wean her into staying on her own.

WOO HOO ( picture me gleefully jumping for joy),
Debbie

That's great news!



I was going off to get all my quotes about how day care prevents isolation... helps out the caregiver's stress... promotes independence and increases cognitive abilities through support and socialisation...

And then I thought:

Nah... just say "that's great news" - the rest is pretty obvious!

My very best wishes to you and your Mother re: this... I've spent plenty time at day centre's and love 'em - if I could work in one for a living I'd be chuffed... but when I'm trained as a Mental Health Nurse I'll more than likely be working on a ward somewhere.



N.

 

[rummy]

Amy, I think both. I think if I happy and smiling, it inspired her to be that way too. They can sense if your "off" and I think that rubs off on them. I will try to stay this way when she has her bad days, and she will !

Neil,
We have such a shortage of places our folks can go in our area. There is only one day care and it is $45 a day. They recommend she comes three times a week to get used to it. I think she would take one look at the AD patients and bolt. Thiis program we will go to tomorrow has older folks in all kinds of conditions and a volunteer for every single person there to stay with them and help them with whatever they need. I'm sure they couldn't handle severe AD but they do have alot of dimentia folks. I'll report what happens tomorrow and cross your fingers for me that this goes well. We have been told that if she will go to one of these programs, she will do much much better perhaps not decline so rapidly.
Deb

 

[daughter]

Hi Debbie,

I did a quick google and found that the (very good) list comes from "Caregiving: Helping an Aging Loved One" by Jo Horne, AARP Books, 1985, ISBN 0673248224 - just in case you need to reference the quote,

Best wishes,

 

[Dearth]

I'm sure they couldn't handle severe AD but they do have alot of dimentia folks.
Deb

Over here some places have issues re: mobility... I know of some centres that can't accommodate folk who have severe difficulties in mobilising... unfortunately, I think that's down to Health & Safety issues so I can see why that is.

As to your Mother - let us know how it goes - hope she enjoys it (from what I've seen most folk do - even the quiet ones who don't join in).



N.