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Spokane, WA
This profile photo is my mom and me at the beach--she is 26 and I am about 18 months. LOVE the joy!! I am a mom of three and a teacher; being a teacher means I have to go back and cut the f-bombs. There were a few. Because Alzheimer's sucks badly. This blog, for nine years now--skipping a few while I was too cheap to buy my domain name-- helps me un-peel and process the endless layers of sad woven with weird and--impossibly--comedy.

Wednesday, January 12, 2011

Caregivers Bill of Rights (for AD and other Dementia)

Got his today from the Marketing Director at the beautiful retirement community where my mom currently lives. What a lovely and confirming document! And of course it makes me feel guilty because I'm not the Caregiver, well, except I am for now, in that I'm IT. But you now what, most of our parents would HATE the idea of their children taking care of them, if they had the capacity to express it. Especially when they need more physical assistance. 
Actually, a woman from a support group said her dad told her "I hate you seeing me like this." It broke my heart and I of course said, then GET HELP!! said another way. "Put them somewhere!!" She's been caring for them for 13 years at her home and is completely under-qualified on lots of levels to do so anymore. Yikes. Anyway...




A Caregiver's Bill of Rights


I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones 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 attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

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

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

Dementia Dreams

SOOOOOOOO
Here's what I'm actually going through that I would NEVER discuss on Facebook:
My mom has advanced stage Alzheimers Disease, at age 64, and I know that she will be moving soon to the Dementia Care wing. (I have put the dream in Arial font, so as to distinguish it. This post is weird)
I had a dream last night that she was moving to a temporary other room until they could get a room for her in dementia care. (I don't know the exact status because I am not her caregiver..she is a ward of the state with a guardian who handles her "money"..she's out and will soon be on Medicaid, which will only pay for her room and board.)
So I had given her a baby..(we're back to the weird stress dream) one I had apparently given birth to.(.as if I can do that easily with my reproductive past and Mike's vasectomy. But you must suspend disbelief in weird dreams) She had all these antiques and and my kids and Mike were walking all over the building waiting for me to get done sorting which stuff went to charity, which to her place, which we were keeping. The antiques just kept coming, and she had 5 huge bronze Buddha statues, and the baby kept going somewhere else and I kept losing track of my purse and my kids were still hungry, it was after 9pm and I had to help get everything clear because the staff needed to redecorate the hallways. between her old and new room. I had taken two Lunesta and was stumbling around..there was some weird spaceship involved at some point. 
Now, Would I have different dreams if were more involved with her care? Probably not, my guilt at not wanting to be involved more in her care would just be transformed to more stress and anger and resentment. Yea, fun mommy!
And the dream was more real than surreal.  I am not her caregiver because I have three young kids who need me, and a husband who is my intellectual, physical partner, and who is not willing to live with me the way I am when I am with my mother: Annoyed, angry, scared, sad. She needs to be watched and guided and prodded to eat, get dressed (as do my kids, pretty much always) and find her way to her room. Since she ran out of money she doesn't have private caregivers designated to do that for her in her independent living apartment, but she does have someone who comes at 4:30, gets her dinner, makes sure she takes the meds she doesn't take because she forgets immediately what they're for (they're for depression and memory, and don't really improve either. She is otherwise physically healthy)
When she sort of understood that she needed to be in memory care she was open to it, but then she saw the people in there, who are of course, usually 20 years older than her and obviously wandering aimlessly. But she does the same thing, just quicker, because she's fit. She told my brother and I (this was the first time he was around for all this..he lives in LA) "I would rather die than live here."
Now, apparently, I could have just ignored that and had the process move forward but I told the guardian, STOP, we're not moving her, let her enjoy some more independence.
Here's where the guilt lies, and why I have dreams about her. I SHOULD feel at least compelled to go see her every day, or at least maybe twice a week, but I don't make myself go..I will always feel guilty about it while purposely getting myself engaged in some other sort of important or mundane task that then makes it anywhere from inconvenient to impossible to go see her. When I go with the kids, they get antsy and run around her tiny apartment;. they make her nervous because she thinks they'll get lost outside the room (because she does) and that people will get mad at her for making too much noise. So it's stressful. If I go see her myself, it's fine, but the time is limited because I always feel I Should go back home to be with my family. 
Even as a child, without going into a long tangent, my mom was just there, mostly. Mad, sad, confused; there. I wouldn't go to her with anything. Like a grumpy..Jesus I cant think of the woman in My Fair Lady..see I'm already getting it!!?? Eliza Dolittle. Good, I still have firing synapses.. I grew accustomed to her face. I was glad I had a mommy and didn't not have a mommy, but my dad was just the go-to parent. So I've always felt guilty I didn't like her more, or want to be around her more. 
You know how taking care of your own children makes you appreciate what your parents did for you, or makes a really glaring reality of how much they didn't? Well, so does being faced with taking care of your parents. Ahh, it's just icky. No way around the sad, or the scared. Or the guilt.

Winter Wusses

How the hell do you spell Wuss? Newsrooms get so excited about storms, because inevitably, there will be breaking news for the morning cutins--6 car pileup, one car blocking..semi's in ditch..you know..plus school closures, late bus routes..all the makings of a newgasm (that's what my editor and I used to call it from our sedate post production room as we were making promos and the news people were buzzing around  trying to get graphics spelled correctly) But really, it's not like we're Mississippi or some state that doesn't get snow. It snows here. We drive slowly. Our kids put on snow pants. We either allow extra time for travel, or, like me, are just late.
How fun, no one's reading this blog. I haven't told anyone. Read Zuckerman's story in the TIME magazine finally. He has 550,000,000 people on Facebook and I have no readers! Ha! That's why I like writing for a pre-existing publication which has at least hundreds of dedicated readers already. (which then, accordingly, earns me hundreds of dollars) I do not have the makings of a venture capitalist.

Thoughtful young me

Thoughtful young me

Seventies chicks

Seventies chicks
Me and my mom Lynn, 1973

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