How It Is Now

The key in the door turns
The memories are silent
Hiding least they evoke
Difficult memories.

Over the threshold one steps
Into the waiting abyss
The house filled to overflowing
With every last encounter.

Into the front hall closet
Onto the waiting hanger
You place your jacket gingerly
With others no longer owned.

Walking past the lonely bedroom
Into the front of the condo
Shelved and collected and scattered
With mementos, memorabilia, reminders.

Two grocery bags filled
With individual items
Then emptied into the cabinets
And refrigerator ... for one.

Dinner from the microwave
Emptied on a tray and taken
Into the TV room TV table
For flickering eating friendships.

The cats, two of them purring
Bringing life and joy to you
Without expectations to be filled
Joy on the shoulders of sorrow.

Then bedtime with the wrinkled sheets
Only your scent and your pillows
And the memories no longer silent
Keeping the night long and loving.

Watching TV

Always more to learn when loving and living with Alzheimer's Disease. I continue to get supportive/  informatve e-mails from the various memory care facilities I visited before having Leiberman be our choice. The topic this one discussed, watching TV, was one which happened to me and now in hindsight I realize that Gregory's upset was his way of telling me he was having trouble following the plot of a TV series he used to love. His reaction surprised me but now I understand.

Certain types of television become harder to track and therefore enjoy as dementia progresses. An activity that should be a pleasurable way to pass time instead can become vexing.

Complicated plots may be too confusing, as earlier developments can't be remembered. Shows with quick cuts and no story line (such asAmerica's Funniest Home Videos or cooking shows) work better. 

Slow-paced documentaries or nature shows may also appeal more. 

Avoid commercials if you can, because each break in the show presents a whole new story to follow; instead use TiVo-type recordings or movies. (from www.caring.com)

The show we began watching was the third series opener of "Downton Abby." We had watched all the previous episodes and were looking forward to the new season opener. Some fifteen minutes into the new episode Gregory became very vexed, angry, and was acting out. I turned off the TV (at least I knew to do that much) and was able to talk him down. Instead we tuned into "Big Bang Theory" and he was contented again.

I didn't realize what had happened but the lesson learned is that sometimes the person with Alzheimer's does the best they can to communicate their needs with you. One must realize that the WAY they communicating these needs may have nothing to do with the PURPOSE of their communication. It is a guessing game but if you are alert enough, you can win.

Now I have a DVD that Gregory loves to watch on the TV/DVD player in his room. It is a video of beautiful scenes of nature across the seasons, each backed with lovely, appropriate classical music. Now and then an animal enters the scene in its natural habitat. For example: a goat is climbing a mountain during winter while something from Beethoven plays.

Another type of video that not only Gregory, but it looks like every one at Lieberman loves, are the classic early musicals of the 60's and 70's: South Pacific, Flower Drum Song,  The Sound of Music, Carrousel, etc. The story line doesn't seem to matter but the individual songs are fun to watch, the people beautiful, and the story for the most part happy. I.E. NO VIOLENCE!

Caregiving

Gregory, as reported by his companion, cried a lot the other day. Crying, sobbing, big tears. But seemingly tears of joy. Perhaps remembering our time in Paris while listening in the living room with the companion to the singing of Edith Piaf.

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.

Going, Going, Gone

Maybe I should just keep record on a separate piece of paper instead of posting it to my BLOG but this way I can: 1) process, 2) share, 3) record, 4) maintain, 5) save, 6) cry.

SO FAR THIS MORNING: Gregory could not take simple directions on how to get his shaver to stop squeaking (at least he did figure out how to plug it in) so he had to wait until I finished my use of the bathroom (read taking a dump) to help him. We are not shy so use the bathroom together. It actually gives me the opportunity to monitor him without seeming like spying. But even my private moments have become his.

Next I had to remind him to put on deodorant and face cream. He could not find them so I opened the medicine chest and pointed. He was able to put the correct product on the correct area of his anatomy so I guess I should be grateful.

Then he put on his underwear (I missed noting if they were right side or backwards but guess that doesn't really matter) and sweats without my help. Fist time this week! So I guess I should be grateful. Doesn't necessarily mean anything for tomorrow.

As he was leaving the bedroom I mentioned, "Your paper is on your desk." 

He headed towards the front door. I called him back and said, "Your (corrected the word) NEWSpaper is on your DESK." 

He headed toward the front door again. "On your desk." "WHERE YOUR NEWSPAPER IS EVERY MORNING! Do you know where your DESK is?" 

"Yes, out there."

"Yes, out there," I reinforced.

Then the numbness, and tears, and confusion, and not knowing how to "fix" this type of interaction, and the fear of the future, and depression (and only a tiny bit of anger) follow. 

Then the processing for the BLOG begins. Luckily I had made my first cup of coffee before all this began.

Simultaneously through all this Emma, my kitty (GiGi is Gregory's kitty,) brings me her Krinkle Ball so we can play fetch. A little bit of unqualified love from my kitty and processing from my BLOG make me feel a little better. 

Perhaps making some signs for important places that Gregory does not seem to be able to make associations between the word and the place would help? Don't feel really optimistic about this but I will try. 

Perhaps I need to make sure that I do not begin to meet my own needs (like taking a dump) until Gregory is finished with all of his and settled. Problem being that often when I think he is settled, a new aspect of getting settled doesn't work for him. But I will try.

At least I was not mean to him. I think I appeared patient on the outside but even feel guilty about what was going on inside, isn't that silly? I will try.

Last night we watched "Call for the Midwives" on PBS, a British program about post WWII and a group of midwives and nuns in England. Excellent second season. 

A baby is born with Spina Biffida. Medical know how will make the baby's life as comfortable as possible but one of the nuns talked about the early days when the best thing to do for the baby was to help it die comfortably. Even in the church, that was acceptable. 

After trying to help the parents but failing to help them deal the diagnosis, the head nun tells the grieving midwife, "Sometimes one has to admit defeat and move on. There is a lot more of life that needs to be lived."

I identify.

Today, this came across my mail: 

Shambhala Publications

SUPPORTING CONDUCT

With regard to one’s behavior, one must relinquish all the limitations implied in subject-object duality (gzung ’dzin gyi la dor ba). One should abandon all ordinary ways of assessing outer and inner phenomena, and the engagement or withdrawal of the mind with regard to “good” and “bad.” One must not, through mindless clinging to sense objects, stray into the five ordinary mental poisons. For when approached with skillful means, all are but the display of the great and perfect equality.

—Jigme Lingpa, from Treasury of Precious Qualities: Book TWO!

So does that mean that what I am experiencing is neither good nor bad? It only is? Is what I am going through bringing me closer to achieving great and perfect equality? And if all of this is true, how am I going to get through this journey to the end? Time will tell, but I will try.

Meanwhile, this is a list I have been keeping for a while.

GOING GOING GONE

Taking pills - comes and goes.
Putting a belt on - usually gone.
Using mouth wash - gone.
Word bathroom - gone.
Understanding most words - almost gone.
Using most words - almost gone.
Brushing teeth - comes and goes
Reading at bedtime - almost gone.
Going for a walk by himself - gone.
Picking out his own clothes - gone.
Getting ready for bed - comes and goes.
Shaving in the morning - comes and goes.
Getting dressed - comes and goes.
Toileting - comes and goes.
Communicating with words - gone.
Using a fork and knife - comes and goes.
Navigating the food on a dinner plate - comes and goes.
Fastening his seatbelt in the car - comes and goes.
Using a urinal when out - comes and goes.
Controlling flatulence - comes and goes.
Comprehension of TV - uncertain.
Helping make the bed - comes and goes.