What's In A Word?

On the way home from the Chicago Children's Museum today, where Gregory was helping me with preparation for the opening of Michael's Museum, it was raining.

I commented, "What a lot of rain we have had so far this Spring."

Gregory replied, "Yes. That's probably why I am feeling so EARIE."

The sky was very interesting with heavy dark clouds as well as white billowy clouds and spots of sunshine.

Gregory commented, "Look at those dark clouds, they are so BLUNDERY."

I kind of knew what he meant. In trying to "live in his world," I replied, "Uh huh."

Stress Reliever

This is a retelling of the retelling of a story that my friend Jan told at dinner this evening. I think there is a lesson for Alzheimer's Caregivers here!

A woman is in the grocery store with her young daughter. The daughter is sitting the the grocery cart having a major tantrum. Flailing, screaming, crying. The mother's response is, "Now Jennifer, calm down." "Jennifer, behave." "Jennifer, get yourself under control."

A fellow shopper is watching and listening to the woman's comments. She goes up to the woman and compliments her on how well she is responding to her tantruming daughter.

"I am Jennifer," replies the woman.

Expectations Are What You Expect Them To Be

When you love someone, nothing is impossible. While I am spiritual and NOT religious, I do like the quote from 1 Corinthians 13:7 "Love bears all things, believes all things, hopes all things, endures all things."

I first suspected that Gregory was having problems long before he was aware of them. Eventually we had the doctor run a number of tests (with Gregory's permission.) When we got the verdict of Alzheimer's we were almost relieved because now we understood what he had been going through and why, as well as what we could do to get on with our life.

As Gregory lost abilities, I learned to compensate. As the rules changed, I was able to figure out what the new ones were. As it became evident that there were no rules, I learned to "roll with the punches." I knew that I had to change my behavior, because he couldn't change his.

I cannot say that I ever had expectations (advance ideas) about what caregiving would entail. I just adjusted as it was needed. I chose not to think too much about what future caregiving might bring as I would rather live for today. That does not mean I don't study up on what I might expect to happen but when it gets too depressing, I put the books down.

As we needed to accomodate we accommodated. As our roles needed to change, they changed. I am fortunate that Gregory has always been so good natured and content and calm and that he has been able to hold on to those attributes even as his abilities continued and continue to dessert him. He defers to me, he trust me, he loves me and I love him.

So my expectations are only that I will continue to grow into being the best caregiver I can be, I will make sure I take care of my own health and mental well being, and I will strive to keep Gregory safe, happy, and involved, I will make the right decisions when I need to make them.

Generation Alzheimer's: The Defining Disease of the Baby Boomers.

Received this from Diane Wright in an e-mail and wanted to share the important information with you!


Hi. The good news is that death rates for many major diseases - HIV, stroke, heart disease, prostate cancer, and breast cancer - are declining. Sadly, we can't yet say the same about Alzheimer's. This year, the first of the Boomer Generation turns 65. To bring urgently-needed attention to the risk facing the Boomers, Alzheimer's Association recently released a groundbreaking study Generation Alzheimer's: The Defining Disease of the Baby Boomers.

We'd love your help in getting the word out on Michael A. Horvich Cares About People Who Care About Alzheimer's Disease about the important information in Generation Alzheimer's, so we can make sure the public understands what can be done to conquer this devastating disease. I've put together a microsite, making it really easy to grab banners, video, text -- anything you think you can use -- so we can make sure as many people as possible have access to this information:

http://alz-news.org

Thank you so much,
Diane
--
Diane Wright
dianew@alz-news.org
Facebook.com/actionalz
twitter.com/alzassociation

Grace

In response to yesterday's post, Lynn commented: "Sometimes the greatest victory is getting through your day with some level of grace, regardless of what is actually accomplished."


Yes Lynn, I agree that one always needs to keep an eye on "Grace." However, sometimes the problem is not a question of "getting things accomplished" but rather "getting through the craziness that is Alzheimer's." 


Metaphorically, the person with Alzheimer's is not "running on all cylinders" so they don't notice how they are running. The caregiver is running on all cylinders and sometimes therefore, the emotions kick in before the intellect. This causes interactions in which love, respect, kindness, patience, understanding, etc suffer.


Then Grace takes the form of apology. I believe the key, as you say Lynn, is "SOME LEVEL" of grace. One cannot always be perfect, even though we try : •)

THINGS ARE EVEN

When things are "even," meaning going well, I neglect writing here. Then I feel guilty about not writing since April 11 (that's 6 days) so I have to be careful not to attach that guilt to when things are going well. Get my point? Meanwhile Gregory continues to "progress" and I continue to "cope." But life is good, love is good, and its beginning to look a lot like SUMMER!

Making Up Words

I was helping Gregory with some grooming using a barber's scissors to trim the hair around his neckline. "Wait!" he blurted. "I have to get stattle."

I lost it and began a fit of giggling, he joined in. "I know, I know," he said, "that's just my version."

When I regained my control, I was able to say, "Yes, a combination of steady and stable equals stattle."

How am I able to figure these things out?

Frustration Time Two

Today G and I had another one of our talks. He may or may not remember the talk but it helps me to process and it feels like we are sharing the dilemma of Alzheimer's. He is living it and I am feeling the repercussions of protecting him while dealing with my emotions as I watch his decline.

Today's talk centered around a number of events that took place this weekend. He was having trouble with doing something. I had to step in to help and this made him a little angry and short with me.

In a previous BLOG we came to the conclusion that: "...my helping him has  become a choice between hurting his feeling less or hurting his feelings more. "


This time we came came to the conclusion that sometimes it seems like our choice is his being frustrated when he cannot do something or his frustration when I have step in to help. Either way ... FRUSTRATION.


Luckily (others would say Thank God) the frustration and anger is short lived and we just get on with living our life the best we can. He will usually end with, "I love you very much." I will reply, "That was never in question! I love you too."

Grace

I was watching a series of three short videos for an Alzheimer's drug company that was conducting a survey as to the effectiveness of the videos in relating to caregivers. Two of the videos didn't really appeal to me. One was about a man talking about his father getting used to living with him. Wasn't much emotion there. Another one was about a woman who takes care of her mom now like her mom used to take care of her. Emotional but not my style.

The third I could relate to. The woman was saying that she was better able to have a good day with her mother when she herself was well rested, had a chance to exercise, and didn't feel rushed. I could relate to that. Then she quoted a friend of hers and I could really relate to the quote: "You do not have to care graciously, you just have to care." She responded saying, "I am not always gracious, but I do care!" I could identify with that.

My final comments to the drug company is that very few pictures and/or advertisements talking about dementia did they show married couples, usually it is a child taking care of a parent. And NEVER did I see a situation in which same sex partners were involved in this Alzheimer's journey.

Alzhemer's does not discriminate, it affects all people equally.