FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Showing posts with label Narrow. Show all posts
Showing posts with label Narrow. Show all posts

Monday, August 26, 2013

A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

Tuesday, July 16, 2013

An E-Mail to C and M, Our Niece and Nephew

C & M

How about a visit Wed August 7 through Sunday August 11? We have theater tickets the next weekend.Want to spend longer so G and I could enjoy the area, spend more time with R & L, and more being with M & D. Of course we can never get enough time with you guys but understand that you'll be working during the week. No expectations for your being available during the week.

Interesting comment on thinking about what is still to come. Do you have any idea of what you might be looking for? You certainly are a success in your personhood, your real estate career, your love relationship, etc But I guess that you are still young enough to aspire to more, bigger, better, different, etc. 

For me, I feel that I can relax on that account because I have achieved much and have what I want (given G's Alzheimer's.) I do not find the need to prove myself or to "earn my keep" in society. Been there done that. While Michael's Museum was great and continues to be a wonderful legacy I am happy it is over. I also recently quit Ragdale because my efforts and volunteerism there began to feel like a job. Feels good to say goodbye to them while I hold on to the fond memories of my residency in 2010.

One continuing desire is to be a published author. Not self-publicaiton but bigger. So I guess I think about that but not obsessively and many not strongly enough to really get it done. 

I have begun my first attempt at writing fiction. Based on my real psychic past life regression experience which I think we have talked about. I am researching the time period of each "life" and trying to flesh out a chapter for each person I have been based on the regressions: Carny, Nun, Farm Wife, Rural Child, and Renaissance Baker. 

Travel might be a possibility but only will happen if I can do it by myself, with G being taken care of, and while OK it is a little lonely to do so without him. P has said it would be fun to travel together. She spent a long weekend with G and I in Mexico and I think we would get along as travel partners. 

But for the most part I am content to be at home with Gregory. I can fantasize about big trips to Europe or Japan etc but don't really believe that I have it in me, even with help. Maybe when the ship comes in and we can take R or P along all expenses paid it would make it easier, or with you and M. Fun to think about.

I would like to have more avenues to express my creativity but that seems back door to getting through each day. Sometimes I think that I can NEVER be creative ENOUGH! 

I find that Gregory and my world continues to narrow and we pull in but that is probably a combination of old age and his illness. We keep busy, see friends, entertain, are entertained, enjoy the movies on DVD and our theater and opera adventures. I do not feel the need to accomplish anything great or volunteer and give give give anymore.

G's birthday party was best attended ever with close to 50 people attending. All had a good time. But I find myself saying I need to cut back, after all planning, executing, and cleaning up after a party like that for a man who is almost 70 years old takes its toll. I am not crying "old man" but am getting older, aren't I? Next year fully catered or just having people in for fireworks, cake, and birthday wishes.

Agreed good and bad are one and both part of being alive. One must take the one with the other.

Regarding your question, we are doing fine. I am feeling a little constricted since we have no companion and I had gotten used to have some freedom and alone time. I expect more students will respond to our notice when they begin returning to campus.

Meanwhile I have enlisted R and J to be with Greg for three times so I can investigate Memory Care Facilities in the area. We are far from that need with many options available but I want to know what is available and get a sense for how it might make me feel to think about having to place Gregory if and when it comes to that.

As far as sad, I am sad but that is part of the "life of good and bad" we spoke of. Some days seem slow and dull and others are more fun. But sadness seems to ride on my shoulders as part of who we are today. If I can get through a day evenly without not to many "confusions" with Gregory, I am content.

As far as Gregory's sad, I think he is just getting more and more tired, a little more withdrawn, and more settled into being "less." But he is happy, appreciative, enjoys his food and TV etc.

All for now.
Love you both lots.
m

Wednesday, April 24, 2013

Interesting

Tonight I thought about Gregory and my increased theater activity. During the 2012/13/14 seasons we will have subscribed to Lyric Opera of Chicago (8,) Goodman Theater (6,) Shakespeare Theatre (4,) and Light Opera Works (4.)

We have been to individual shows at Mercury Theater (1,) Writer's Theater (2,) Northwestern Interpretation Center (2,) and a few others. We have seen musicals, opera, serious drama, concerts, and master classes.

Why has there been this dramatic increase in our attendance in the theater world? So far we have seen "Sweet Charity" erroneously find and loose love, witnessed a strike for a 7.5 cents raise in "Pajama Game," saw "Cesar" killed on the Ides of March, followed a dysfunctional family as they worked out their problems in "Other Desert Cities," joined a fight for gay rights in "Teddy Farrara,"  spent "Sunday in the Park with George," learned to tell the truth at the "School for Lies," lived happily ever after in "Camelot," dreamt the impossible dream with the "Man from LaMancha," asked for more sir with "Oliver," followed the bread crumb path laid by "Hansel and Gretel," danced Musetta's waltz in "La Bohem," JUST TO NAME FEW.

Pretty quickly I realized why this increase. For both Gregory and me, it has been important to get out and enjoy ourselves. We usually go out to a nice place for dinner then the theater. More importantly I think it has helped our world continue to be larger as Gregory's abilities, language, communication skills, and experiences etc continue to grow smaller. The nature of dealing with Alzheimer's Disease is that the person afflicted can do less and less and the interaction with life becomes more narrowly focused.

Experiencing the magic of theater has, as the song goes in "Chorus Line," allowed things in our life to continue to be beautiful.


Everything was beautiful at the ballet.
Graceful men lift lovely girls in white.
Yes,  Everything was beautiful at ballet.
Hey! I was happy... at the ballet.

Everything was beautiful at the ballet.
Every prince has got to have his swan.
Yes,  Everyone is beautiful at the ballet.
Hey!... I was pretty... 
At the ballet.

Everything was beautiful at the ballet.
Raise your arms and someone's always there.
Yes, everything was beautiful at the ballet,
At the ballet,
At the ballet!!!