notes for remembance

Understanding the difference between taking time off and actual self care.

the growing reality of more aged than our medical system cn care for or 'hide' in facilities.

needing to live together as multi-dimensional families (perhaps with someone elses parents)

Not waiting for miracles to make the process easier but making your own miracles

finding the joy

linguistic archaeologist

the beige pants incident and sudden inappropriate dress/undress

Recognition

Mom is struggling to recognize familiar things. We had a moment or two of this but two days ago, she took off a pair of pants and proceeded to tell me that she didn't know whose they were but they were not hers and she didn't know where they had come from. I foresaw in that moment the reason why Alz patients occasionally take off clothes or wear inappropriate clothes. No matter how it looks to us 'the normal people' they don't recognize the clothes and who wants to wear something that doesn't belong to them. It's going to be a bit difficult if it happens in a public environment where we can't make a clothing change with ease...

Then yesterday we attempted to go to a movie (sold out) and when we arrived home, mom didn't know where we were and told me this was not our home and it looked weird (or wrong, I can't remember which) every time we came here.

We had company with us and mom spent almost the entire evening being helpful but wondering whose house we were in. I foresee wandering in our immediate future and we are rapidly advancing to the stage of not recognizing people...I am no longer confident that we will make it to the end of the year with mom living with us.

Those impending changes are difficult to contemplate. I know they're coming but the reality of having them here is something else entirely!

Conversation

I went this week back to the VA to finish (I hope) the paperwork for mom and dad's benefits. While I was there, I had an interesting conversation with Glenda Pavey (she rocks!) about how I see my passions converging into a working possibility for my next career.

I have a passion for Liturgy and liturgical studies, I also have a passion for the elderly and the aged and their spirituality. I told Glenda that I envisioned the 'healthy church model' as a coin perfectly balanced on it's edge. What keeps it balanced is the pillars of youth and aged.

I'm concerned with the movement I see of only appealing to the needs of the youth and young people and their responsibility to keep 'life' in the church. The worship media has become loud, fast paced and heavily focused on myriad modes of sensory stimulation. While this may be good for the over-stimulated youth of our society, the aged can not keep up with the fast paced worship nor do they find themselves spiritually 'fed' feeling the presence of the divine.

I have also noticed in the congregations I've visited a severe lack of true accessibility for not only the disabled but the aged. Stairs are not easy to traverse if you have an elder needing to use the platform, entrances are not always wheelchair or walker accessible, bathrooms are woefully ill-equipped to handle the needs of the various populations, etc.

It's no wonder that our elders feel brushed aside and discarded when the essential components of their spiritual lives are not proactively addressing their physical needs to ensure continued involvement.

Growing old with physical impairments should not be an end of life judgment. The opportunity for learning, sharing and contributing to the vitality of a spitirual community belongs to all the members of the community; young, elder, hale and frail.

Ramblings...

Somedays I forget that I'm dealing with two diseases in my family. We seem to spend almost all our time as a family concentrating on mom's alzheimer's and dad's parkinson's is often overlooked. And yet, in the reality of life, he is the one I look at and watch to see how he's doing. His struggle is so physically obvious that all of us, especially mom, spend a lot of energy on him and holding him up with the schear power of our mental wills.

Because mom looks so 'normal' i find that I am often harsh with her or short-tempered or exasperated or, or, or... I know the disease is not her fault and I know that her responses are not personal choices to make life difficult but it is easy to forget. I get lost in the appearance of 'normal'.

Somedays I get lost in the old patterns of my relationship with my mom, especially the patterns that didn't work very well! We engaged in power struggles for the entirety of my teenage years and even with the alzheimer's our pattern for powering over each other still exists. We both love and need to be right about the other. I have always prided myself on 'knowing my mom' and she has always declared her understanding of me even if we hadn't spoken for a year. Two mighty and stubborn women in the same household is an interesting challenge in the best of circumstances and these circumstances create fuel for even more interesting times...

I often wonder what our early relationship was really like as I'm sure my memories are skewed through my childhood understandings and I am unable to 'look back' with anything resembling adult emotions. Every time mom responds in a way that reminds me of my childhood I'm immediately caught in a flood of childhood emotions and often behave in very childish ways.

Ah, so much for an evening's rambling...

Many things have been happening...

Family has been in town for a visit, dad's sister (who's husband died last fall) and her daughter. It's been nice to have them stop by for a couple of visits. I don't often feel comfortable with my relatives and this is a nice change to hang out with the 'cool' people in my family. At least according to my definition of 'cool'.

Yesterday, for a goodly portion of the day, I spent at the annual Alzheimer's Caring for the Caregiver Day. It was a thoughtful day, planned with the intention of offering a few hours of 'escape' to the caregivers. There was music, entertainment, massages, movement to make you laugh, an opportunity to chat with a doctor about the prevalence of depressions in caregivers (and how insidious it is!) and a fabulous lunch.

The keynote address was but a story-telling couple who I'm now nuts about and have already bonded with :) We have plans to attend the movies together one of my Thursday evenings off! Their art impressed me. Their love for their work, their loved ones who have passed from Alzheimer's and dementia, their loving energy toward others ALL of who they presented themselves to be, impressed me.

It brought to mind what it is I want to do and how vital it is to note ant notate this experience so as not to miss the joyful, shareable moments.
Yesterday, was the second visit with my aunt and cousin. Mom was encouraged to go to the door to meet them (as we could see through the window that they had arrived) and greeted them anew with such joy and enthusiasm. She welcomed them into her home and was so surprised to see them. It reminded me to greet everyone with the same joy and surprise and delight. Even if I'm expecting you, wouldn't it be a gift to be greeted with such delight? She doesn't take anything for granted because she doesn't remember the plans that have been made and therefore each moment is one of joy and surprise and most often delight.

There are time throughout this journey when I still want to grow-up to be like my mom. I remember a time in my life when that was decidedly not true; filled with embarrassment and regret that she was my mom. I wanted to hide from the connection of mother daughter although as I look just like her side of the family it's pretty hard for me to deny that we are related! Now, at this time of her life and at this point in the Alzheimer's process, she does things that I cringe at but I find myself more annoyed and frustrated at the disease and more in love with my mom. She impresses me and perhaps, even if I was loathe to accept it most of my life, she always has.

I may have reached my limit...

For the last several days, I've been feeling that the choice I made to caretake may be reaching it's end. And not because the folks are significantly worse, but because I'm not sure I can continue this much longer. Our agreement to live together for two years (up in December) was solely for the ability to transfer this house into my name after having served as 'child as caretaker' for the two year requirement.

However, I can't qualify for the mortgage on this place and the damn house in SoCal hasn't even warranted a querry in the over two years it's been on the market and without it's sell to pa off (or significantly down) this one, I'm not getting this house anyway so why not move on? I mean, the big reason to stay here is unlikely to happen so what difference does it make if I end the arrangement now or in 6 months??

My shoulders are chronically tense, my brain is permanently overloaded and I'm becomeing a cranky bitch most days (even if I never speak it out loud it's the dialogue in my head...)

I need a good drunk, a good lay or a good cry and I can't figure out how to let go of responsibilities long enough to get any of the three. I never thought I would long for relationship again. I've been through the bad-time blues enough for one life and yet, I long for the supportive, loving, hold you when you're falling apart pieces of realtionship.

I miss entertaining, I miss traveling, I miss listening to my music at top volume (hell, I miss listening to music period), I miss going out spontaneously with friends, I'm damn tired of having a schedule of time off when there are things on other nights that I long to participate in and cannot. I'm angry and sad and scared and I long to be connfident, happy and at peace. And that's an exaggeration as I'm all of those things but the scale is tipped and I feel incapable of any feeling other then gloom and doom --

What a whiny post.

Impossibilities...

It seems impossible to me that 8 days have passed since I last blogged. There have not been many changes in the routine for the last two weeks and it just now feels like we are settled into the new routine! Taking dad dily to the hyperbaric oxygen treatments takes a commitment from not only the patient but the patients support network as well!

Fortunately, the new daycare for mom, Southview, is wonderful. mom is still resistant but there have been zero explosions of anger since we started attending. What a gift! The place is so loving and Cookie and Minnie are tremendous people who obviously care deeply for their charges and their work. Anna and I talke about it last night and both of us ffeel so much less guilt taking her there instead of Ashford place. Nothing against them, just not the 'right' place for mom.

I had my weekend off this weekend and seemed to be finding solace in overeating :( Not my preferred way of doing things but a reality nonetheless. This morning I'm back on WW and finding a positive outlook to the process of weightloss and weight management.

I continue to meet wonderful people who bless my life in unexpected ways. I desire to make a positive impact in the lives of other people; to move them toward healing. How that will manifest I'm not yet clear, but the desire is as strong as ever. My fantasy is that I will win the lottery and be able to start a foundation (or several). I think I must start story/vision boarding to quicken up the manifestation process and to give my desire details so I'll recognize it when it shows up!

Somehow, coming home after a night away gets harder and harder. the presence of stress and diesease and struggle is so prevalent here...

Life goes on...

I experienced mom's first completely "checking out" time while grocery shopping this week. It was different that her normal 'phasing in and out' that we've become accustomed to. It brought me up short and I realized that time is marching on and each moment is more and more precious.

I confess that the awareness has not changed my behavior this week. I suppose that's normal. I can only let her journey with Alzheimer's affect me so much and then I must do what needs to be done for me and for the household. However, there is a layer of awareness that was not available to me prior to that experience.

In the beginning there was a 'need' for me to be fully present to them; doing things they wanted, keeping them entertained, etc. That has modified to a recognition that although life is still meaningful for them (well, dad for certain), I can only live my life and although I have agreed to be their caregiver, I cannot live their life I can only assist them.

Today I wish there was a lot of free hours to just sit and think and write...mom, however, needs to physically do something so I think we'll set up to play a game or two ~