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.
Tuesday, November 26, 2013
I review the events of the day, beginning with "It was a good day." (Even if it wasn't.) I briefly name each significant event: for example: "We shopped for groceries. For dinner we had pizza. The Call The Midwives episode was wonderful."
Next I review the events for tomorrow, again very briefly. For example: "Tomorrow we have a slow morning, then we go to the opera at night."
To the day's event review, Gregory usually responds with: "Yes it was good." or "It was great." or just "Uhuhh."
To the tomorrow's event review, Gregory usually responds with something like: "Oh goodie." or "Nice!" or "Mmmm."
Over time I had to learn not to discuss the entire week, or anticipate out loud something that was happening in two or three days. Too much information was not only not remembered but it confused time even more than it was already confused. He would ask, for example: "Is the movie today?" When it was on the weekend. or "When will they visit?" When people were going out to dinner with us mid-week. What he doesn't know doesn't hurt!
Works pretty well. Not sure how much he understands or remembers but it does give us something to talk about when we go to bed besides the always wonderful:
M: Good Night, I love you.
G: Me too!
M: Me three:-)
Sunday, November 24, 2013
We were watching a movie and I noticed that he was becoming agitated. Nothing about the movie would have caused that. I asked, "Are you OK." And he said he was not. "What's the matter?" He didn't know. I made my usual suggestion, "Do you have to go to the bathroom?"
"Maybe," he said and got up. "Where?"
"Go to the bathroom." He left the room while I took a few more seconds to stop the video. I followed him into the bedroom where he was standing holding his penis. "Pull your pants down and go sit down." He didn't know what to do so I moved him into the bathroom and as I started to help him pull down his pants, releasing his penis, he began to pee. On himself. On the floor. On me.
He was very sorry and very apologetic. I was very soothing and calm and loving. He finished peeing in the toilet and I began to clean up the floor, took his pants and slippers off, and wiped up his leg. He apologized again and I told him it was nothing to be sorry about, just that there were implications involved. "You didn't recognize the "feeling" as an urge to go to the bathroom?" I asked/stated.
"I guess so," he answered. For a while now when I sensed he was upset about something I sent him to the bathroom and he was surprised that he had to take a dump. This is the first time that urination was the culprit. Also he had waited so long that he had the "accident."
The implications are my needing to be more alert to his changing mood, might need to check every hour or so by asking and/or sending him to the bathroom, might need to begin using what I called "Protection Pants." You get the drift of my euphemism.
All I can say, is that reporting this here is helping me get through my numbness, should help you to keep up with our "progress," and is part of my continuing open and honest (if not brutal) documentation of our journey.
Honestly, I am so sad and numb and worried about the future that I don't know what to do. Tomorrow we are/were excited about a Wagner opera: 1:40 Act 1, 30 minute intermission, 1:05 Act 2, 30 minute intermission, and 1:10 Act 3, then the drive home. There is a handicapped bathroom on the main floor (where we are sitting) so I will just have to be super alert.
Meanwhile, for tonight, maybe a short TV show in favor of abandoning the long movie and some popcorn?
Saturday, November 23, 2013
Friday, November 22, 2013
Meanwhile, I realized recently that we have been creating a new language that we use more successfully. When he gets undressed at night, I stand at the closet to collect his clothes to be hung up for the next day. Often he puts the item of clothing being taken off on the bed ... or on the bench ... or on the floor. When I say "Hammy" (a verbally joined together combination of "Hand it to me," he seems to understand and hands me the item of clothing.
He will take off most of his clothing but then get distracted or not realize that he still has on his underpants, undershirt, and/or sox. So I say, "Take off more" followed by "Hamme" and he takes off the next item of clothing and gives it to me. I continue this until he is standing there nude. Then I hand him his night clothes and he usually knows what to do with them.
Often he takes the night clothes into the bathroom because it is warmer in there, puts on the top or bottom, depending, and comes out of the bathroom not realizing or knowing that he still has the bottom or top, depending, to put on. I point and say "You stopped!" and he gets it.
Why does this new language work? I do not know, but I will be more aware of it and see how many new words I can add to make our life a little easier.
I posted the following painting on my Facebook page. It is one of G and my current favorites.
Our friend JY commented: It's like the sunlight filtering through a dense forest. Wow!
I replied: As you know, who knows what if anything the painting symbolizes. I think it is mostly abstraction and enjoying use of color that is rising from deep within Gregory but not necessarily with any connections or associations or at least ones that he could express. I know he did not start out thinking, "Oh I think I'll paint a forest" etc. He probably didn't have those thoughts anytime during the painting and maybe could only see the relationship when someone other mentioned what they saw in his work.
The whole process is, however, wonderful and amazing and I am so pleased that he enjoys the new found hobby so much and that we are fortunate enough to have Nancy Rosen (our Art Angel) support his efforts.
If you get a chance, be sure to visit Nancy's site http://www.nrosen.com to see some of her amazing work. She is one of the most prolific artists that I know. I will advertise here for her next "Save Me From Myself Sale" which she has every December to move some product at good prices so she can create some space for next year's work!
Also, I will post a link soon so you can see Gregory's 2012-2013 work.
When I arrive, Dr. D brings him a glass of tea and they exchange hello's. At the end of the session, Dr. D comes out to say goodbye.
This time Gregory wanted to tell him something. In hind sight, I think Gregory wanted to tell the Doctor that during his wait, he had finished reading his architecture magazine.
Instead it sounded something like this, (with hand motions scooping the horizon,) ... I just ... the ... the ... and ... but ... and ... but ... oh this is hard ... I was able to ... just ... but ... the entire thing.
Dr. D's comment to me later was an interesting one. "Gregory had all the connecting words but no connections." In essence this is Alzheimer's. The ideas and thoughts are still there but the associations between words, meanings, events, experiences, feelings are not.
Tuesday, November 19, 2013
Well yes, dealing with Alzheimer's is no easy task but when it comes to life, there are no major concerns. No career path to worry about. No college entrance exams. No papers due. No classroom lesson plans, no parent meetings, no report cards. No aging, ill parents to help. Financially we are doing OK. I have my health as does Gregory. I do not have any large projects that I am NOT looking forward to completing. Very few shoulds our oughts. No one is "on our case!"
Besides the 24/7 "caregiving," my life is fairly easy, simple. Monday's obligations: Metra downtown, lunch out, opera dress rehearsal, dinner, TV.
Tuesday's obligations: Walk the neighbor's dog, pick up lunch, take Gregory to Nancy's studio for an afternoon of painting, photo document his paintings to this point, dinner, TV.
Wednesday's obligations: Easy day, Shannon visits for coffee and cookies plus the usual.
Thursday: Dr. DeMuth for therapy plus the usual.
Friday: Ivanca cleans, Aaron Brady and Isla (the new baby) visit, Christmas Tree lighting ceremonies downtown Evanston.
Free open weekend, maybe the Botanic Garden.
Monday night: dinner downtown and Parsifal Opera night performance.
Through out the week: Besides the 24/7/365 craziness of Alzheimer's there is grocery shopping, keeping up with e-mails and bills, working on getting my second collection of poetry published, straightening around the house, doing the laundry, thinking about Christmas details, getting ready to visit G's family in Battle Creek for Thanksgiving, surfing the internet, keeping up with Facebook.
When I allow myself, some time is spent with worries like our future, Gregory's progression, the ever present health possibilities, getting hit by a bus. But for the most part I do not worry much. So see what I mean! No major concerns.
Thursday, November 14, 2013
With great compassion, because you have developed clarity, you do not have doubts and you are not unreasonable. You realize that the best way to be skillful is to be reasonable. When you are fully reasonable, actually reasonable—and to a certain extent, painfully reasonable—you begin to experience the genuineness of situations and act accordingly, in a way that is appropriate to the situation.
—The Profound Treasury of the Ocean of Dharma, Volume Two, by Chögyam Trungpa http://www.shambhala.com/the-bodhisattva-path-of-wisdom-and-compassion.html
Wednesday, November 13, 2013
I replied:Do you think there is a breaking point? Is that the point when he doesn’t know you anymore? Will that make it “easier” to make tough decisions? Man I feel for you.XO
Steps before the breaking point and needing a memory care facility? My continuing to grow and understand how to work with him. My continuing to love myself. Continuing with my creative outlets. Continuing to take time for myself when G is with his companion. Possibly adding to the hours that a companion is with us. At some point needing a better trained companion. Buying the condo next door and having live-in help.
Monday, November 11, 2013
Knew you would appreciate Margaret's home. Your condo is magical...retains the magic of Poplar 1 & 2 ... but also pulses with your current energies, passions & downtown - connectedness. Also, condo continues to reflect a blend of your aesthetics + Gregory's. Your energy & incredible ability to create magic & warmth + Greg's instinct for calm. Like art, literature, nature & gardens, your home opens up spaces within oneself. What a gift for this you have, m'Dear! Btw...when ship comes in, here's my prescription; keep downtown connection by living in the condo...but also rent a studio of your own, preferably in a "used antique space," wherein you create a garden ... on miniature scale ... ie. bonsai collection....or a teensy terrarium ..with teensy lawnmower & hedge-clippers?
Sunday, November 10, 2013
i think you were reading my mind, i was trying to figure out a way to suggest maybe greg can no longer go to such events, i was very attuned to both him and you and i know you want to give greg every opportunity to participate in life but it seems like its getting to be where the focus is getting smaller, i talked with MS a bit and had planned on saying something. oh michael it is just shit, im so sad and at the same time know you make his world continue to be special. much love to you both RZ
Saturday, November 9, 2013
Last night we went to the opera "Orpheus and Euridice" by Ricky Ian Gordon which was presented at and in the Eckhart Park Pool. It was given as a free performance by the Chicago Opera Theater (to which we are subscribers) as well as the Chicago Park District and the City of Chicago's Classics in the Parks.
Obviously the swimming pool setting was unusual. And Gregory had a difficult time of it. He kept dozing off and when awake his face was somewhat blank. Possibly he was not registering the action of the opera. I would point his face toward what he should have been watching and I could not tell what his eyes were doing.
I enjoyed the opera but sat there for 70 minutes without an intermission wondering if we would get through it and what would happen if we had to leave since the exit was on the opposite side of where we were sitting. And the action was all around us (including one exciting moment when the dry ice "fog" started filling the entire pool floor area from under our seats. We made it ... but with a mental note to consider future performances and wondering how long we would be able to continue our active theater and opera life.
FULL DISCLOSURE SECTION
This morning after he took his morning dump (announcing as if it was a miracle) he stood to pull up his pants. No you did not hear me mention the part where one cleans one's ass with toilet paper and then a moist wipe. And one cannot assume that took place.
So I popped up from the computer to check the "pot" and sure enough ... lots of shit but no toilet paper. When I mentioned that he forgot to wipe he did not know what I meant. "You need to clean yourself." Still no comprehension. So I went into my, "Sit back down." Which he did after repeating myself two more times. "Use the paper (pointing.)" Which he did several times and miraculously monitoring how many more wipes he would need.
"OK, how did I do?" he asked.
"OK, I replied," thinking "Sad."
This scenario has repeated itself a number of times recently so I am beginning to think that I need to monitor every time he uses the bathroom. I guess I should be grateful that he recognizes (not always) the urge to visit the bathroom most of the time. Sometimes he will get agitated and his face will tell me something is wrong. I will inquire to no avail and usually then suggest he go to the bathroom and that seems to settle him down. Don't know if in effect he needed to use the bathroom or if the distraction allowed him to forget what was really upsetting him.
I don't even try to figure these things out anymore (except here to process for myself and for your benefit.) A SHITTY story don't you agree :-?
Thursday, November 7, 2013
I rubbed my eyes, smiled, and got out of bed to get dressed. By the time I got to the kitchen, I could smell the warm nutty oatmeal finishing up in the microwave and sat down at my place with the waiting bacon, orange juice, and coffee.
After breakfast Gregory cleaned up while I spent an hour writing. He finished reading his New York Times while I worked on my children's story. By now it was late morning and we decided, at Gregory's suggestion, that we go to the Botanic Garden to see the Autumn leaves.
In the car from the passenger's seat, I enjoyed seeing the highway's tribute to Autumn fly by as we discussed last night's theater. We saw "Wicked," which for both of us was amazing since we have read all of McGuire's books on which the musical is based. It was fun to pick out the details from the original Wizard of Oz that McGuire was able to make bigger and give a new interpretation without "ruining" the story we loved so as children.
As we walked around the Botanic Garden, Gregory reminisced about similar trips we had taken while we were courting and getting to know each other some 37 years earlier. He took at least as many photos as I did and it will be fun to combine our joint efforts.
In the Garden Cafe we had trouble deciding what we wanted for lunch. Neither of us were really hungry so we chose to share a large salad. I let him pick out which one to get while I got the waters, plastic wear, and napkins. He paid for lunch and found me at the table by the far window overlooking the pond and beautifully colored Willows.
During lunch we began planning for our annual fall get-away. Should we go to New England again or go to Charleston to visit Liz and LS? Maybe we should just lie low and stay home in Evanston as we look forward to visiting the Michigan Maires during Thanksgiving.
And while we were talking about November, how could we not dream about December and our upcoming Viking River Boat cruse to experience Christmas along the great rivers of Europe. We were so looking forward to that trip.
Gregory went off to find the bathroom while I got a head start at the gift shop. By the time he found me there, I had an arm full of books on gardening to add to our collection most of which we often refer to as we create and maintain new beds of flowers, vegetation, bushes, and trees at home. We so love gardening and have decided to add as many bulbs as we can this Fall in anticipation of the coming Spring.
The trip home was a little slow as Gregory patiently got us through rush hour traffic. We stopped at the grocery store and Gregory double parked so I could run in to pick up a steak for dinner.
I was a little tired so lied down for a nap while Gregory began dinner. It was so nice that it was a "cook free" day for me. I always love when it is my turn to plan, shop, and prepare dinner but I also love having nothing to do with feeding us except assuming the role of cleaning up after dinner.
While I cleaned the pots and pans and put the dishes into the dishwasher, Gregory played piano. I went into the living room and even though he wanted to watch a little TV, I encouraged him to continue his practicing. He was in the middle of learning a new piece and it was coming along nicely. I have always said that my ideal image of "home" is lying on the couch while my love plays the piano.
Instead of watching any TV, we ended up going to bed early, enjoyed a little bit of the "nasty," and read for a while before going to sleep snuggled in each other's arms. Another ending to another wonderful day.
I am so content, my life is so ideal, and I am so in love with my man.
Wednesday, November 6, 2013
By Pema Chödrön
November 6, 2013
WE USE OUR EMOTIONS
We use our emotions. We use them. In their essence, they are simply part of the goodness of being alive, but instead of letting them be, we take them and use them to regain our ground. We use them to try to deny that in fact no one has ever known or will ever know what’s happening. We use them to try to make everything secure and predictable and real again, to fool ourselves about what’s really true. We could just sit with the emotional energy and let it pass. There’s no particular need to spread blame and self-justification. Instead, we throw kerosene on the emotion so it will feel more real.
Monday, November 4, 2013
Same night, Gregory and I watching "Send in the Midwifes" a PBS series about post WWI England, poor section of town, lots of children and pregnant mothers as served by four nuns and four midwives.
This episode was heavy, not only with child but also with one of older nuns who has Alzheimer's, one of the pregnant mothers who is black and shunned by her neighbors because of her color, and an older wife who is emotionally abused by her husband.
The episode ends well with the Mother Superior supporting the nun with Alzheimer's who is praying that she be protected from the devils that attack her. "There are no devils here Sister Monica. Only angels. And when you forget things, we will be here to remember for you."
One of the other pregnant white mothers who almost falls down the stairs is caught and helped by the black mother and the barriers of race hatred begin to fade. Later when the black mother is having birthing contractions and cannot contact the midwives, the white mother helps get her to the convent for help.
Finally the abused mother spends a lovely lunch with her grown son who is visiting, for the first time standing up to her abusive husband telling him, maybe for the first time, what she thinks. When she returns the husband has realized how important she is to him and prepares her dinner. A new softness has arrived.
Through Gregory's sobbing at the end of Send in the Midwives he was able to say, "I want to be able to help ... others." We rocked and I assured him he does help others and listed how many and in what ways. It was an impressive list.