Saturday, July 31, 2010


"To have clarity or intelligibility...understandable"   Coherent.  

This morning when I went in to get mom ready for the morning, she was motioning at me and so I moved closer, turning.  She fussed with the hem of my shirt which must have been "not perfect" according to her way of seeing things.  I looked at her and chuckled and said thank you and continued on about the business at hand.  I looked at her again, and the realization struck me, that at moments like these, mom is coherent, and that thought is almost horrific to me, considering the state of being she is in.

As dementia has progressed these last several years, it is easy to settle into the assumption that mom "is not there"  most of the time.  When I stop and think about all the possible times that a good part of her actually is present and coherent, I can't even fathom what it is like to her even in the minutest way, to be aware of some of the things that she must experience as I tend to her on a daily basis.  I can see in her eyes when "she is there", or at least a good portion of her understanding is present.  

Today, she did not like the fact that I was checking her to see if she needed to be changed, trying to clamp her legs tight, that is someone who has understanding and is trying to have a say in what is being done to her.  I am in a whirlpool of emotions over this as I consider it all.  But, I still have to do the things I do to care for her nonetheless.  

As I sat down to write this, I also did some research looking for someone who may have addressed the topic.  What I found were basically clinical and professional writings, nothing from a "just me at home" individual.  So, this is just me, no special degrees or education in the area of caregiving for someone with dementia, learning as I go.

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Saturday, July 24, 2010

Thought This Was It......

I just realized I had not written about mom being sick and near death these last couple weeks.  Two Sundays ago, she started having a real deep congested cough.  I called for the weekend nurse to come and check her out, everything was good except for that coughing.  The next day, her regular nurse came to see her.  Mom was virtually unresponsive, no movement, it took some doing to get her to wake up but she was pretty out of it.  She was running a low fever also.  The coughing wasn't constant but it sounded awful when she did.  There was no eating that day for her, and she was put on antibiotics.  Well, between prayer and the medicine, she began to immediately turn around for the better.  I could tell the next day, Tuesday, that she was improving and she continued to do so each day after.  The whole ordeal was very emotional and stressful, it got me into the "death" mode and I began to do some more planning and prep for that time.  Which is good to do these things before the actual event takes place.  I ordered photo cards that are the size of business cards, with a pic of her from her last birthday on them and on the back is the poem I wrote for her and dad called Reunited.  They will be inclosed in a memorial card that I am making.  And I made and ordered 4 photo books to pass out to those who have been the most involved with us during this caregiving time.  I have received all these already, still have to finish the card though, and I will order some more of the photobooks next month.  Anyhow as of today, 7-24, mom is doing well, still some congested coughing, but it is not real bad, and she has not been running a temp for about a week or so.  It was a rough time for awhile there, but mom is a fighter, and she always has come out of  whatever situation she might be going through.....except dementia.

Thursday, July 15, 2010

Holding Hands

While talking to her nurse, mom looked at me intently.

Gently waiving her hand at me.

I asked her what did she want.

She pointed at me...she took my hand in hers.

Her hand so thin and translucent.

We stood there holding hands.

I said to the nurse, she has never done this before.

Makes me glad, makes me sad, makes me concerned.

She has been very sick, but has been improving everyday.

Maybe this was her way of acknowledging the care given.

I don't know, but it was a special moment.

One that needed to be written down.

Tuesday, July 13, 2010

End of Life Caregiving - Caregivers Library

Trust Yourself
If you have provided primary care to a loved one for a longer period of time, you are probably the person most equipped to determine what needs to be done now, and to fulfill his or her wishes. Trust in your ability to handle these additional responsibilities, but also realize that some things are out of your control.
If you have been placed into an end-of-life caregiving role by a crisis or event, try not to second-guess what you are feeling. Understand that conflicting emotions—fear, anger, grief, and helplessness—are natural, and have confidence in your own judgment

Understand the End Stage
Having some knowledge about what lies ahead—physically, emotionally, and spiritually—can make a real difference as you and your family prepare for the death of your loved one. Talk to your loved one’s doctor, nurse, and other members of the health care team about what to expect. Discuss these issues with family members, friends, children, and visitors when appropriate. 

Connect with Support Structures
This includes family, friends, clergy and ministers, professionals, volunteers—anyone and everyone who has something to offer. Take advantage of help wherever you can find it, and avoid the all-too-common tendency of caregivers to become isolated.
Keep in mind, too, that most people want to help, but may be uncomfortable making the offer or with the circumstances. Make it easy for them. Let others know what they can do, in a concrete, practical way.
Review Legal and Financial Arrangements
This may include wills, powers of attorney (both financial and healthcare), “no code” or do-not-resuscitate orders, as well as the location and disposition of important documents and proofs of ownership. Having all of these measures in place and up-to-date will spare you and your family time and difficulty.

Maintain Your Health and Well-BeingIt’s easy to lose sight of your own needs and requirements during this time. Do what you can to maintain balance in your own life—physically, spiritually, and socially. If you feel selfish or guilty for spending time on yourself, keep in mind that no one can draw water from an empty well.

Evaluate Hospice
Hospice services have a high success rate in battling pain and helping terminal patients remain comfortable. Some families may have a difficult time with the idea of stopping efforts to combat a disease, but it’s important to consider all care options. Because hospice patients are cared for by a team (physicians, nurses, social workers, counselors, clergy, therapists, and volunteers), you may want to look at and interview services in advance, to choose a group that the family is comfortable with.
“Palliative care” programs likewise focus on maintaining comfort, but there is no expectation that life-prolonging therapies will not be used. And while hospice services commonly take place in the home, palliative care teams usually work in facilities or institutions.

Pre-Plan if You Can
There are many steps that can and should be taken well in advance of a loved one’s final days. These include a letter of last instructions (in which your loved one sets down his or her wishes for the funeral or ceremony), as well as pre-planning with a funeral home. Many choices and details can be finalized beforehand, when everyone is thinking clearly. This offers the additional reassurance that matters are being carried out in accordance with your loved one’s wishes.

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Friday, July 9, 2010

Embarking on Another Adventure!

I am embarking on another adventure in the land of caregiving.  It seems that one of the things, almost the primary thing, that helps me through each day and into the next, is when I have a purpose and project to work on.  These past months it has been such a struggle to stay "up".  I get lonely and bored, feeling without purpose and not being able to utilize the skills I have, which is life-giving to me.  Helping Denise Brown of with her online store has been a big help, but once it is is done lol.  Then what?  I can't write a blog everyday because things just don't happen everyday that are newsworthy!  This is my first and primary blogsite, but I also have another that I add informational articles on caregiving to, Caregivers Not Alone. I want to be able to personally visit local caregivers, who have been isolated like I was for so long.  This site is addressed to their needs.  The thing is, I have not found anyone yet that I can visit!  So, it has been a bit of a downer for me.  Then the other day I had another "idea"!  I have set up a blogtalkradio show, which I will host!  Hhmmmm, what have I gotten myself into now?!  Well, it is called, of course, The Bear Hug Waltz!  I am going to start with my very first blog post, and read them over the air, and add some comments as I go along.  My first show, sounds funny, lol, is on Thursday, August 5th at 10:00 a.m.!  So, I have to fine tune my plan, which I don't have to much left to do, then promote it wherever I can, and I will be ready to go!  I thought well, when this is done with, then what?  Duh!  I will schedule a show each week of course!  I have a lot of blog posts to cover, and most people have not read the earlier ones, which are quite significant.  They are the beginnings for me, of what was to come and I want to share them.  So this is something that I can work on every week and I think it will help me.  I am also looking into being a ChaCha guide, lol which is a human search engine basically.  It is something I can do right here, and bring in some money.  So, will be making a decision on that soon. Update on mom:  her health is still good, she is basically bedbound now, it has become to difficult to get her up even once a day at this point, more so for her then me. But I am so concerned with her being injured, especially putting her back into the bed. If I do get her up, she will usually not even stay sitting upright or stay awake for even an hour.  It is alot to go through for such a short amount of time, and risk possible injury to her.  Soo, many conflicting thoughts and emotions flying around inside me, most of which I cut off quick and stuff down deep, have to, for now.
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Friday, July 2, 2010

4th of July and Mom's Tuna Macaroni Salad - Repost

Fourth of July memories, the assembling together of the Jackson and Picknell clan at Uncle Jack and Aunt Peg’s farm, which later became the campgrounds. Tables and set up outside, filled with every kind of picnic food you can name. Grills going for the burgers and dogs…don’t think we did brats in those days. Geez that sounds like it was eons ago…but in a way it is.

Games would be played, bat mitten, croquet and so on. The usual bunch of cousins would go explore the wonders of the woods, crossing the creek by shimmying over a fallen log, or trekking through the hollow and jumping onto the tiny island nestled in the creek bed there.

The nieces and nephews all babies and toddlers then, now adults with children of their own. The cousins, many of us close in age, now with adult children AND grandkids! An unfortunate thing that the tradition of these 4th of July family gatherings, could not have passed on to each generation to come. But as time has it, age takes over, property is sold, families spread out and go different directions in life, seldom seeing each other again.

One of the things I always looked forward to every 4th of July, besides going to the parade, the activities at the picnic, and fireworks in the evening, was my mom’s tuna macaroni salad! A favorite of mine to this day. I have made it for years, sometimes varying the ingredients according to the tastes of those who would be eating it. But the one and true original, mom’s recipe, has been and always will be the favorite, the one I measure all tuna macaroni salads against…and none compare to her’s! (7-05-09)

7-2-10  I saw this pic when I was looking for some 4th photos to use, and I remembered the Doll Buggy Parades, held on or around the 4th.  I was in some of them riding my pimped out trike lol.  Never won the prize, but it was  a fun thing, distant memories. I don't think they hold them here in town anymore, would be a shame if they didn't.  Kids feel important, special, in their own little parade.