Thursday, February 25, 2010

Invisible People

Something triggered this thought recently, I can't say what it was, but the thought was that as caregivers, we are invisible people. We aren't seen, aren't heard from aren't thought about. Not all caregivers are in that category, but I'd be interested in doing a poll to see just how many felt that way!
I inadvertently tested this out earlier this week. A national restaurant was offering free pancakes, and one of my facebook friends posted that she was going to go the next morning to get some and who wanted to go? I said memememe! Of course I couldn't go, but I thought I would post on my facebook about the free pancakes and I would like some, who would like to bring some to me? As usual, higher then practical expectations develop! I did get a couple comments on it, but no real takers to see to it I could have some pancakes. Everyone, family and friends within a 50 mile radius know I am a caregiver, and most know I get out of the house very little.
I am in no ways traumatized by any of this, but I did find it interesting. There are those who I know think about me and mom, but how many there are that do not, and how many there are that do not call to see how we are and do we need anything, any help? Again it seems to come back to the, it is all up to me to ask others for help. But this pancake thing, I was all but screaming out, won't someone please see me, here I am, my husband is out of town, it is just me and mom, and I would really just love to have someone bring me some pancakes. Sigh (just did that).
So, other caregivers, do you feel like one of the invisible people, and if so, in what way?
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Wednesday, February 24, 2010

Definition Of A Friend by Donna Ryan

(This is a post from Donna Ryan, another blogger and a special friend.  I asked  her if I could post it here on my blog to share with all of you.)

What is the defintion of a friend? Personally I think there are many levels of friends. Sometimes we need a friend to drop everything they are doing to help us in a bind. I think at times we need a friend to share our thoughts with in an open and honest way. Sometimes we need someone from our past to sit and reminisce with us about those good old days. Sometimes you find that very special person who shares the same values as you and there is just a connection. Sometimes we just need support and insight on a problem or situation from anothers point of view. Sometimes we need that one person who will not pull punches and tell us the truth not necessarily the words we feel we need to hear. Sometimes we just need someone as a sounding board and once we get through venting and using them as a punching bag we see things more clearly. We may disagree with our friends but they remain loyal. We may have totally different troubles but have no problem listening to each other. We may have completely different lives but still have a bond. If we are lucky enough to find one person with all of these qualities we should rejoice and be lucky. Im blessed as my best friend, my husband, has every one. That is very rare. I have friends that may have a few of the qualities. I have even met strangers on line that I can call friends having never met them who understand me. The main thing Im learning about friends is people we hang out with affect our lives so Im learning to avoid complicated people. I try to spend my time wisely and no longer just communicate with people for lack of anything else to do. Your quality of life changes simply by who you are spending your time with. So, rest assured, if I am talking to you, visiting you, writing to you, responding to you, or any or all of the above your my friend or I would not be wasting the time.

Sunday, February 21, 2010

The Person Left Behind in the Shadows

“A woman's hopes are woven of sunbeams; a shadow annihilates them”  George Eliot

She may have been a dancer, a singer, a baker or cook

A seamstress, a crafter, a reader of book

A daughter, a wife, a mother, a grandma

A teacher, a nurse, an instructor of drama

Whoever she was, whatever she did

The hopes and the dreams are forever now hid

Back in the shadows, the shell now displayed

The substance, the person, dementia has slayed

Wednesday, February 17, 2010

The - Negativity - of Being - Negative -

I have been aware lately that it seems that everything I write concerning my days or experiences have such a negative attitude about them and it concerns me.  I don't want to bring other caregivers down but encourage and lift them up.  I feel like I am in this rut.  I was going to say "for some reason", but there are many reasons that I am fighting with negative thoughts and feelings.  First of course is taking care of mom and all that goes along with that, which is to much to mention here!  Next would be my son going back to Iraq on Friday for his 3rd tour, I am having a hard time with it which is really not normal for me.  My husband is going back to see his mom in WVa this week and will be gone for almost a week.  I think I need a positive happy moment to show up like soon!  Does that make sense to anyone?  I'm sure it does.  Anyone have any positive happy ideas?

Tuesday, February 16, 2010

Disappointment the Sequel

On Feb. 13th, I posted a short rhyme. I won't call it a poem because it does not evoke any type of pleasant feeling for me. I decided to explain that rhyme and share a bit more on the disappointments behind it.

Some family members came to visit mom, the visit was somewhat strained and I had to initiate most conversation. These are family members who have not been to see mom in years, except they did stop once when she was napping so didn't actually get to spend time with her.

Now, I get that a 95 year old woman in a wheel chair, rocking back and forth and sideways and not very entertaining, and actually down right, well repulsive is too harsh a work, but you get the idea. But they are family, not friends or acquaintances, but family. One of them didn't even sit down during their time here, preparing for a hasty retreat I would imagine.

I don't usually write about the family because I don't want to ruffle feathers, but sometimes you just have to step out and say something. Like I have told people, it isn't just about coming to see mom either, it is about coming to see me and have some interaction with me too. I told my brother one day, when he said mom didn't talk when he would come over and I said, "Yes, but I do!" So, he will sit and visit with me a bit when he comes to drop off her nutritional drinks. But you know, he never asks about me or mom. I have to force feed him facts about myself and my life, or mom's, so is the visit really helpful to me, not usually.

I told my husband after the family left on Sat., "You know, I am better off when no family comes at all, then I don't have to go through the expectation and disappointment." I do have a few people that come by, once or twice a year who do sit and talk with me, and they are very helpful.

I am so not alone in this whole scenario of expecting from family and friends only to be let down and just want to retreat. Through these last years I have met so many caregivers who deal with the same thing over and over again. It is no wonder we end up becoming recluses, besides not being able to get out very much, we end up having to protect ourselves from "them", and begin to shut "them" out!

I have given the address of my blog to many people, family and friends, only a few have even bothered to check it out, to them I am grateful because they cared enough to know about this "caregiving experience" with mom and I to find out what I had to say. I will continue to blog and expand my sites, because I know to reach even just a few caregivers who are in need of a friend is so important, and I need the writing as an outlet for these myriads of emotions and thoughts that infect me each day.

I so appreciate the friends I have made while blogging, you are more special to me then I can say. You are my family, because you take the time to get to know and understand me, you do not disappoint....

(Footnote:  the family members were only here maybe 15, 20 mins I think)

Disappointment Once Again

when family comes a callin,

expectations there should not be....

for hopes they go a fallin,

when changes you do not see....

Wednesday, February 10, 2010

On Being Savvy....

My husband and I were talking yesterday about how he had to come up with some "tricks" to get mom to eat Monday night. He was interacting with her and her teddy bear, "bear buddy".  Usually mom resists being fed by anyone but me, so he is as he calls it, becoming "savvy" at how to deal with her.  He comes up with ideas that basically distract her from the fact that it is he who is feeding her and not me, and she eats. 

A week ago when I went to church, he fed her breakfast, well the same scenario was taking place, she was not going to eat for him.  So, he brought our youngest grandson in the room and he sat in her wheelchair and on her bed and talked with her.  She smiled and smiled at him (can't help but do that, he is the Trent!).  So, she was quite distracted by him and Gary was able to get her to eat her food.  I am quite pleased he has become "savvy", it is much better then becoming frustrated with the situation when she refuses to eat and it becomes a successful meal time!

Sly as a fox, wise as an owl!

Are You an Overachieving Caregiver? (From the Alzheimer’s Sourcebook for Caregivers)

Are You an Overachieving Caregiver? (From the Alzheimer’s Sourcebook for Caregivers)

Wednesday, February 3, 2010

The Long Goodbye

goodbye to sewing
goodbye to tole painting
goodbye to quilting
goodbye to doing laundry
goodbye to driving
goodbye to managing money
goodbye to taking trips
goodbye to shopping
goodbye to baking
goodbye to cleaning house
goodbye to doing dishes
goodbye to sending cards
goodbye to talking on the phone
goodbye to cooking
goodbye to reading and word search puzzles
goodbye to walking alone
goodbye to getting in the tub
goodbye to making it to the bathroom during the night
goodbye to telling time
goodbye to cooking
goodbye to going out
goodbye to remembering some times and places
goodbye to remembering some family and friends
goodbye to bathing
goodbye to using the bathroom, only the potty
goodbye to knowing morning from night
goodbye to eating solids
goodbye to drinking liquids
goodbye to feeding herself
goodbye to using a straw
goodbye to dentures
goodbye to blowing her nose
goodbye to sitting in a chair or on the couch
goodbye to using the potty
goodbye to contolled body eliminations
goodbye to talking
goodbye to my name
goodbye to standing
goodbye to sitting unassisted
goodbye to being up in wheelchair for more then once a day
goodbye to always sleeping at night
goodbye to eating what I determine to be enough for her
goodbye to skin staying strong and intact.

hello mom with the twinkle in your blue eyes......