Monthly Archives: February 2014

Counting the Blessings

I woke up this morning thinking about those words, “Every day do one thing for yourself” and thinking….

I do so many things for myself each day and I am so lucky – blessed some would say – that I feel ashamed of all the time I spend lamenting my lot.

I have my garden beds to entertain me with the promise of eternal regrowth each year (oh I could focus on the loss of my huge organic garden in my old home, oh yes I could! or I can remember how my back ached and ached with all that work and just rejoice for a few fresh veggies and the flowers every summer.)

I have my piano lessons – a new challenge which torments and teases me into focusing beyond myself.

I have my work, my passion for environmental justice, which sustains me and gives me purpose every day, along with the awesome responsibility to all those who travel that lonesome road with me and the critters.  And I do mean awesome – I am filled with awe at the greatness of spirit, the generosity, the vision,  I see in others each day.

I have the love which brought me to this place. That love is intact, even if we the people holding it close are damaged by the ravages of age, as old growth slowly returns to the forest. 

With my love being barely functional, I get to make all the choices about what we eat, and when we do things — bit of a double-edged sword that one, but still, it is nice to not have to consult anyone else on the daily trivia!

I have a loving family whose support is unconditional and I feel their love and concern in my heart, holding me up, every day.

Some of my love’s children have become close to us both, and that brings me great joy and a sense of good, as well as the practical help which they extend.

I have so many friends, who seem to always stepping up to my side when I falter, much as I do for my love when he staggers and almost falls, my friends, who seem to be there even before I know I need them, each one offering some little thoughtful gift of time or help or support — sometimes just a great big belly laugh — sometimes a healing session, sometimes a quiet walk.

Yes, I do lots of things for myself each day, and horrid as this situation is or can be, I am among the fortunate ones in this world.  

Let me remember that.

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Wise Words on Self-Care

Wise Words on Self-Care from our support group leader:

“Every day you need to do something for yourselves, as full time caretakers.

“You could plan it in the morning or ask yourself last thing at night – what did I do for myself today?

“It’s your ticket to survival.”

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Another very interesting website

I just discovered The Alzheimer Spouse — specially for those of us caring for partners – It has been going for 7 years now and the woman running it just placed her husband in long term care — although it appears to have been incredibly difficult and depressing for her. The site also has all kinds of resources http://www.thealzheimerspouse.com

 

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Web site Resources

Posted from one of group:

I have had time to browse and was given the first website by a group I have joined to help with type 2 diabetes. The leader of the website at the course I am taking at UBC told me that they use the following resource for their caretakers information.

 https://www.facebook.com/pages/Family-Caregivers-Network-Society/105246827085http://

You have to fool around with the address but I got it at www.fcnscaregiving.org

 Then from this resource I got the following.

www.careringvoice.com

If you join the above you have access to loads of web seminars, there is a whole list if you go through and search. I mean past pod casts that you can listen to.

lots of information at care-ring.com.

check it out!

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Token Words of Care for Caregivers (but we don’t buy them)

An Alzheimer’s Association newsletter item this morning got my hackles up: “Caring for a person with Alzheimer’s means making adjustments.” 

But then, we were having a bit of a grumpy morning anyway — my happy sunny boy – my 79-year-old going on 5 — seems to have disappeared under a cloud of ouches and suspicions.

The piece talked about research on and care for the caregiver and ended with the usual:  “…Caregivers are often the casualties, the hidden victims, of Alzheimer’s disease. “No one sees the sacrifices they make,” she said. It is vital for caregivers to take good care of themselves, she added, by exercising, eating and sleeping properly, and getting respite care when needed.”

That’s the kind of sentence that used to make me rage, “WTF? How?”

Things have been slightly better lately but it doesn’t change the fact that my entire life – the last of my working years and the vaste majority of my energy – is being sacrificed on the alter of someone else’s disease. There is no alternative, and yes, I love the guy, BUT I don’t like it one bit.  

It’s true – fate is like that – bad things happen to people all the time, but you know, sometimes I think those who suffer the devastating consequences of a relatively quick disease or accidental death are luckier …they do not have an unending, unceasing theft of their lives – they can grieve and slowly move on. I see it all the time among my widowed friends – they can make a lunch date – they can go on trips, they can take a course, they can walk around their house without someone asking insane questions all the time…..while my soul is being sucked slowly right out. By the time I am free of this 36-hour-day, I fear I will have no will or joy left to explore the rest of the world.

Fear of the future I think is the biggest debilitating problem in dealing with this disease. The gap between diagnosis and eventual death is so vague and varied we are all left spinning in the wind of fear.   

But then the caregivers weighed in on the article, and I was somewhat comforted to find that the vast majority of them had the same reaction as I did. As in, what a useless bit of advice!

But one person’s words did offer some comfort.

“There are NO FAILURES when working with an AD person. You just do your best and endure.”

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by | February 19, 2014 · 11:10 am

Strange times

Yesterday the doctor suddenly became firm that we should file Do Not Resuscitate orders. Don did not understand the conversation, I think, but today, after several days of shaky behaviour, overly exhausted, somewhat querulous, a bit paranoid and suspicious, today, he realised what was happening. We were talking about where Courtenay was, and he was getting impatient, so I took him for a drive in the car: “This is Comox, this is the bridge, this is Courtenay….” I wasn’t cross, but when he came home he said, “Now I see what is happening. I won’t be here very long.”

A wonderful new review book had come in the mail, addressed to him, because he used to edit the magazine with me, The New BC Roadside  Naturalist: A Guide to Nature Along BC Highways, (Greystone Books) with discussion of all the roads we loved to travel.  Don quietly looked at the book, and cried and cried. I cried too, but not as much as I would have three years ago.

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