Monthly Archives: September 2013

Just got an email from the Care-ring Voice Network about their fall webinars — or tele-workshops. The workshops are also listed here: http://www.careringvoice.com/tele-upcoming-sessions-home.php

These are free sessions that you phone in to, and sometimes you can ALSO watch on your computer (but the phone is the important part). They are usually in the evening or at noon, and only one or two hours. There are several sessions  this fall on elder abuse, but also lots on and for Caregivers too.

The BC Family Caregivers Network Society (http://www.careringvoice.com/tele-upcoming-sessions.php?id_organization=27)  has one on Assertiveness Training for Caregivers. Hope it tells me how to tell my guy NO without triggering a major episode.  Or maybe how to tell people they really have no idea what is going on in his head (or not) when he smiles and looks pleasant.

Many of the BC workshops are facilitated by Allison reeves, a therapist in Victoria who I find enormously helpful. Don’t know how she gets the emotional energy to be so empathetic and directed at the same time, but she has helped me many times over these many years.

Anyway, I hope people take advantage of these workshops — they are a wonderful resource, and one more way of sharing our burdens, our successful strategies, and our joys.

-DB

Ok folks – I’ve actually got it to work — the way it goes is….I add you – you get an email inviting you to set up a wordpress account. Do that (just an email and a password) and then log out. Ignore other emails from WordPress unless you do want to start your own blog. Your next email from caring  CV will be an invite to be an author — click accept and you will be able to make you own new posts.

On Sunday we had a meeting of the people who have been doing some caregiving for my partner, under the “CSIL” programme — Community Support for Independent Living. This program gives you the money to hire your own caregivers independently. I don’t think they usually give it to dementia caregivers, because it was set up for physically disabled people who wanted to direct their own care. However, in our case, so far, it is working wonderfully, since I hire only people Don likes, and they can take him out in the car (which equals freedom from his constraints, in his mind) and take him to concerts, the museum, etc.

Anyway, we all got together for a quick meeting and debrief. We talked about the different experiences each caregiver has had — what he can do, what works — for example, care rides, and what doesn’t (too crowded a situation). We talked about the issue of bathrooms — when the caregiver needs to go, what do you do with your client, who is liable to get lost by way of panic? And vice versa. Answer – give him something to hold, and, for both of you, use the disabled washroom if there is one, because it only has one door, so it is easy to watch.

We laughed, and told a few stories, (including how to use the old Navy stories as a way to distract him) and all understood that the goal is to keep Don entertained and happy, so that he is “healthy” longer. And to give me some space so that I can rescue my own life.

I got some insight into what my partner is like when I am not there too.

In the end, one friend hugged me as they all left and said, “You have a team now.”

And yes, a team meeting to discuss changes and further developments seems like a very good idea every couple of months. That is another advantage of being on the CSIL program — the ability for the prime caregiver to share in that team evaluation aspect of care.

Another great blog posting from the Mayo clinic newsletter this morning – I know it describes a lot of my “journey” and as one of the comments say, I too am eager to read the rest of the story.

http://www.mayoclinic.com/health/alzheimers-caregiver-journey/MY02549/?utm_source=newsletter&utm_medium=email&utm_campaign=alzheimers-caregiving&pubDate=09/19/2013

DB

PS Still trying to get this blog to work for everyone!

“He washed my eyes with tears that I could see

The broken heart I had was good for me…..”

It was an ancient “Red barn” on Condensory road.  The barn itself was considered sound enough to remodel into a horse stable.  The old fir clapboard was worn thin with many storms, nail scarred and marred from over a hundred years sheltering loads of hay and feed and farm animals. The grind of wind and rain with dust and grime had done their work of all but stripping the once proud red stain.

The clapboard was considered useless except for firewood and thus taken off the sides of the ancient haven for horses and livestock and their food.

The carpenters were masters at their trade of remodeling old buildings to fit a present need.  Another craftsman was standing by.  He saw value in the ancient clapboard and asked for permission to take it home. He saw in his mind’s eye something beautiful about the old wood that had seen so much history.

Dusty dirty board piled in the back yard. The artist craftsman’s wife had trouble seeing the value in such a disarray of dilapidated wood!  She had wondered about his sanity when he brought the old boards home.  Day after day he patiently worked on the filthy boards, cleaning them with a wire brush. Each day, he would come in covered from head to toe with the black dirt of the years stuck on his face and clothing.

Gradually the boards took on a new /old look.  Some of the red stain remained engrained in the wood the mar marks were all still there.  Some of the boards still had the remnants of whitewash from the bottom inside of the barn.   Then this simple craftsman began to work like a Michelangelo, forming beauty out of chaos.

One evening, in deep distress, a visitor came to the home of the craftsman and his wife, a friend to the wounded spirit.  The kind of friend that could help the human spirit see beauty and value where it could not be seen before. Deep despair and grief.

A quiet comforting place to pour out the soul, to be listened to and pray. A warm light through the despair.  Exhausted sleep, accepted, safe and loved.

Day dawned. “Come and see what my husband has been making” she said with proud delight lighting up her face. Sunbeams streamed into the quiet comforting place. Shining quietly, gently onto an awesome sight.  The place of the pouring out of the soul was illuminated to show a beauty that could not be seen in the dimness of despair and tears of the night before.

As the sunbeams filtered through the curtains onto the contents of the room, the visitor was awed by amazing beauty of the four items of furniture in the room.

The artist craftsman had used the different hues of stain, whitewash, weathering and mars to make a beautiful symmetrical patchwork for the coffee table top lovingly designed with biscuit joints and routered edges showing the true color of the original fir. A bureau graced one wall and two end tables the couch. Each unique and magnificent in simplicity from the “wise old clapboard”. Someone saw value and beauty where others saw refuse that needed to be gotten rid of.

Now the artist craftman’s wife saw beauty and value in  her husband’s creative gift to transform something worn out and useless.  She also used her gift to see beauty and hope in a torn up dilapidated, marred old soul.

The visitor with soul refreshed, thought of the Creator of all things and how He tenderly, carefully, lovingly values His creation even when there seems no worth left. Thanks be to God!

“He washed my eyes with tears that I might see

The broken heart I had was good for me

He tore it all apart and looked inside

He found it full of fear and foolish pride

He swept away the things that made me blind

And then I saw the clouds were silver lined

And now I understand, “twas best for me

He washed my eyes with tears that I might see.”

– G bud

I know the day would come, or rather, I had read the day would come but did not really believe it, until yesterday. We went out last night for a little trip to the bridge to look for salmon, which we have done dozens of times over the last few years. Don swore he had never been there before — which happens occasionally. When we got home he explored the house, and said, “Oh this is the office.” “Oh there’s a bedroom – we could sleep there.” Following my policy of 8 years now, I showed no surprise (I think) and simply said, “Yes we could and we will! Do you want to watch TV?” thus changing the subject and giving myself time to think, (or is it brood?) about this development.

He seems to know his way around the house today.

-Deb

This is the book I desperately wanted to tell all my caregiver friends about and so I thought of starting this blog.

Loving Someone Who Has Dementia: How to Find Hope with Coping with Stress and Grief, by Pauling Boss, Jassey-Bass, 2011. Boss focuses on the realities of ambiguous loss, which all caregivers for those with progressive diseases are suffering from, and usually with little or no understanding, except from others in that dreadful tunnel. She discusses the myth of closure (yes!), the need to build yourself a psychological family, and how to begin to appreciate “delicious ambiguity” (your beloved is there and not there, himself and a stranger, you are tired and do not want to see the end of it) and finally provides some Guidelines on Balance. The whole format of the book has caregivers in mind — a short book with short chapters with a story and then some points and a bit of discussion. The chapters can be read in any order or not at all.

I found it very helpful to help me examine the strange lonely echoing grief I live in.