Memory Care Facility Information

Every now and then I get an e-mail from Memory Care Support Facilities asking me to share their information with my BLOG readers. Usually I have avoided doing this as they are commercial ventures and I am not. But I have decided to include this type of information in a post when I receive it as it may be beneficial to you. I am not supporting or vouching for this establishment but their information looks good as does their web site. If you are in California check them out!

http://activcareliving.com

Happy Holidays

Time To Review

Each night, when Gregory and I are tucked into bed and the lights are turned out, we hold hands.

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:-)

Milestones

Often times milestones mark achievements and celebration. I am sad to report that the milestone Gregory and I reached tonight is not cause for celebration.

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?

Forest Gump

"Sometimes there don't seem to be enough rocks to throw!"

A New Language

As you know, Gregory has difficulties with language retrieval as well as generation not to mention connections between words and their meanings and/or associations. When he is focused on an item, no words or pointing can distract him from that focus. So if you say "Give me the fork," often he can. But if he is looking at or thinking about a glass, you can "fork" until you are blue in the face and you'll only get "glassed!" Got it?

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.

Painting

Gregory continues to paint almost every Tuesday with Nancy Rosen at her studio in Chicago. He has completed close to 150 paintings (of various sizes) in a little under two years.

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.

Associations

Yesterday, since I cannot leave Gregory "home alone," he went to therapy with me. He sits in the lobby reading while I am in therapy for one hour.

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.

Interesting

The other night, as I was drifting off to sleep, I realized that my life has no major concerns! "What do you mean by that?" you may ask. Isn't Gregory's Alzheimer's a major concern? Doesn't it cause me grief, sadness, depression, anxiety, frustration, not to speak of hard work 24/7/365?

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.

Compassion II

Shambhala Publications

GREAT COMPASSION IS PAINFULLY REASONABLE

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

E-Mail Communications

In response to the last post our niece asked:
 http://mhorvichcares.blogspot.com/2013/11/e-mail-to-friend.html 

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

I replied:

C

Yes, a definite breaking point will probably arrive. Do not know for sure when that will be. If I were to become ill or incapacitated myself would be one. G's not being aware would be another. G's incontinence will probably figure in there somewhere. My physical inability to lift and care for him would be another, whether his physical needs increase or I get too old to push and pull. 

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.

You know how you didn't want to mention TP so as not to add to my burden (and I chastised you and said I'll let you know when it is too much:-), sometimes I feel like I add to your burden by sending my depressing (and sometimes but seemingly less often uplifting and loving) missives your way so often. You do not always have to read them all and/or comment. I know that both of you are there for us.

That's why You Love Us More,

m

On Nov 13, 2013, at 12:28 PM, Colleen Maire wrote:

E-Mail to a Friend

N

Gregory had a great day painting after two weeks of not being there. I didn't mean to be mysterious when we arrived but I didn't know how to respond to "How are you?" Simple question but no good answers. Lately I have been very sad, more lonely, and even with all my creative endeavors ... bored with life. Day by day G has more difficulties with more things. I am not sure that there is anything he can do consistently on his own anymore.

Maybe it will make me feel better if I "unload" a little but also wanted to bring to up to date on who Gregory is now a days besides the handsome, loving, kind, good, person he has always been.

He can barely get himself dressed and undressed and soon I will probably have to take that over totally for him. About 50% of the time he needs a reminder about how to brush his teeth. Showering works if only because he does so when he goes swimming with the companion so I don't have to deal with that.

Bath-rooming gets more and more confusing for him. At least he recognizes the urge but sometimes it takes a "Do you need to go to the bathroom?" from me when he is pacing around the bedroom while I am working at my computer. He needs coaching with cleaning up after a bowel movement. (Sorry for the bluntness.)

Reading at night is almost out of the question. If he does't loose his place in the book he seems to get hung up on one page not realizing that he needs to turn to the next page to continue reading. He "pours" over his newspaper each morning but I am not sure if or what he gets out of it comprehension wise.

Theater, opera, events etc are getting more difficult for me to navigate for him. Eating out is difficult. Bath-rooming at events is difficult. Timing is difficult. Falling asleep during the performance is somewhat problematic. Not sure if he is able to follow the story, also not too problematic but it means we cannot discuss the event afterwards.

Watching him eat is painful so dinnertime is not a fun-time. He is confused by what is on his plate, how to eat it, how to cut it. He uses his fingers mostly (OK by me) but I may have to begin cutting his food. He cannot help with prep or cleanup so I do it all.

He is not at all available to me emotionally, intellectually, sexually. He cannot communicate except by showing up where I am and looking confused and stumbling over words. Sometimes he will beckon and say, "I can show you." But then he cannot explain when I go with him. I do all the talking all of the time. I do not think he has spoken a logical, comprehendible, complete sentence is months (maybe years?)

When I am with friends I have to remind myself not to talk all the time to fill space, not be in charge all the time, not make all the decisions, not monitor everyone's behavior!

I continue to give up more of who I am and what I do so I can be available to help and entertain and feed and dress and maintain him 24/7/365. Sleeping is relatively OK but he is up and down during the night so I sleep lightly to be there for him. (And now and then the cats get crazy and keep me up a good part of the night.) Luckily he is sleeping longer and more and I can take naps. I have an alarm on the bedroom door so he does't wander during the night if I do sleep deeply, there is one on the closet in case he looks for the bathroom in the wrong place, there is one of the front door in case I want to nap during the day.

For now he knows that he doesn't cook, make his own coffee,  do the laundry, take out the garbage, drive, use the garbage disposal, help himself to snacks, prepare meals, clean up after meals, put dishes in the dish washer or put them away when clean. This makes it a little easier for me but that means I DO IT ALL. If he did try to do these kind of things he would most likely mess them up and cause me more problems. Or he would break things. Or he would loose things. Or he would hurt himself. 

With the door alarms, and the fact that I can "lock" most of the kitchen appliances my life is a little easier but sometimes I worry that he will FORGET that he doesn't REMEMBER. Any day he might think he can still cook. Or drive. Of course that wouldn't happen because he couldn't find the car or the keys but I still wonder when that day will come.

I will close with my stock description of our life right now: Gregory is happy, content, enjoys his life, is and feels safe with me. And I cope (although sometimes this takes more energy than I have.) And it only will get worse. I probably haven't seen anything! And I die.

P.S. You are one bright spot in his, my, our life!

Love ya,

Michael

What Friends Are For

Communications with a friend.

Here are a few photos of the home of my favorite gardening blogger, Margaret Roach.  Reminds me a bit of your various homes & projects unique blend of magic, authenticity and spiritual grounded-ness.  J 

http://www.apartmenttherapy.com/margaret-roachs-upstate-garden-123211

I looked at the photos of Margaret Roach's home. WONDERFUL! I so miss having my own garden (although at this point probably could not manage one) and while I love our condo, I really miss living in a "used" antique space. Also I really want a room of my own. Well when our ship comes in...
m

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?    
J 

Lol about the miniature lawnmower and clippers! The idea of a studio is in the picture. Thanks for your wonderful analysis of our home, it is always interesting to hear how it is perceived by another (especially when the perception is complimentary:-) Interesting that you talk about Gregory's aesthetics when in fact he has none left. All of it is me. So I guess I have been creating for him. His influence on my desire for and understanding of calm and solitude and minimalism (or relative minimalism) continues. 

m

Theater Follow Up

RZ, in response to yesterdays post, wrote:

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

My Reply via e-mail:

Or maybe you were reading my mind:-) I think the unusualness of the swimming pool etc and maybe a "bad" day is what we were experiencing. Besides the "focus" I have never seen Gregory that tired at a performance. In traditional settings he still seems to do well enough but the Pool was definitely too much ... for him and for me to monitor. 

When we go to the Lyric or Goodman it still seems to be OK and I always make sure we sit on the aisle. That seems to help. Also when it is just the two of us and I can give all my attention to him instead of visiting with friends, it also seems to go better for him. 

I have been aware for a while that this "skill" is now in the "comes and goes" phase. What happens is that there is a period of time when he still does well enough that change is not necessary, then I begin to be more supportive, then the skill returns, then it leaves, and finally I decide that it is time to discontinue that particular activity. 

One of my gauges for future theater decisions is also "does it disturb those around us." At the pool I think it did but at other venues on other occasions it doesn't seem to. So at this point I will probably not take Gregory to theater with friends but he and I will continue to go when it is just the two of us. He enjoys the experience and the music so much that it is worth my continued efforts (again as long as it does not disturb those around us.) We are, however, certainly on the path to theatrical extinction. 

Thanks for your feedback, your support, your love. And yes ... IT IS JUST SHIT!

Since you mentioned MS, I copied him so he could be part of the conversation. Thanks to both of you.

Love ya,

m

P.S. While I was at the computer writing this, Gregory finished shaving and was getting dressed. I glanced over and saw that his underpants, undershirt, and sweatshirt were on so far ... and all three were backwards. Now I wish I hadn't intervened and waited instead to see if he would have gotten his sweatpants on backwards also. But that would have been mean :-) In the past, I have told him, "Since you get your clothes on backwards so often, why don't you just do it wrong. Then they'll be on right." He laughs. I smile (and die.)

Theater and The Full Disclosure

Yesterday I posted a fantasy about Gregory and me. I thought it would cheer me up to not tell the same old sad story. It did cheer me up for a while thinking about fond memories but the problem with fantasy is that it is NOT reality. And in Alzheimer's case even reality is often NOT real.

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 :-?

Stories I Have Seen

This morning I was gently awoken by Gregory, "Michael honey, breakfast is almost ready. I decided I would make Oatmeal for us today."

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.

Just Let Them Sit

This one strikes me as a little complicated to read but none-the-less with an important message.

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. 

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.

It's All In How You Look At It

Technically the glass is always full! Wonderful way to look at life when you wake up every day with someone who has Alzheimer's Disease.

New Hope - But 10-15 Years Away

---

Largest Alzheimer’s study ever doubles the number of genes associated with the disease

By Tara Bahrampour,

In the largest-ever genetic analysis conducted on Alzheimer’s disease, an international group of researchers has identified 11 new genes associated with the disorder, doubling the number of known gene variants linked to it.

The International Genomic Alzheimer’s Project, a collaboration of two groups in the United States and two in Europe, scanned the DNA of 74,076 older volunteers from 15 countries — including people with and without the disease — to look for subtle gene variants involved in late-onset Alzheimer’s, the most common form.

The study, which appeared Sunday in Nature Genetics, provides additional evidence of the involvement of certain genes in Alzheimer’s, such as one connected to the abnormal accumulation of amyloid protein in the brain, which has been associated with the disease. It also finds new gene-related risk factors that may influence cell functions.

The 11 new genes join a growing list of known gene variants associated with late-onset Alzheimer’s. Until 2009, only one had been identified; with the new findings, the list reached 22.

The identification of so many new genes offers promising new avenues to finding drug therapies, said Gerard Schellenberg, a professor of pa­thol­ogy at the University of Pennsylvania and the head of the Alzheimer’s Disease Genetics Consortium, one of the participating U.S. groups.

“Not all are good drug targets, but the longer the list of genes that you know are implicated in a disease, the more likely you are to find one that might be a good candidate for a drug,” he said, adding that it could take 10 to 15 years to develop drug therapies based on the new findings.

The study, which was supported in part by the National Institute on Aging and other components of the National Institutes of Health, also identified 13 additional gene variants that it said merit further investigation.

Marilyn Miller, program director for the Genetics of Alzheimer’s Disease in the Division of Neuroscience at NIA, said the large scope of the study, with so many participants from so many countries, was key to its success in identifying so many new genes.

“Alzheimer’s is obviously a complex disease,” she said, “and because it is so complex, it is only because of this broad-based collaborative effort that we’ve been able to begin to find potential solutions to tackle the disease.”

© The Washington Post Company

A Visit With Family

As usual we had a wonderful time during your visit. For Gregory, he loves you lots and enjoys your being here. For me, it is nice to have people around the house with whom I can interact. For some strange reason, it also helps when others can see how Gregory is. 

When I am here by myself, on duty 24/7, I feel unappreciated by life. Not that I need people to "fawn" over me, but having others "experience" it with me, helps! Makes me feel less alone. Makes me feel less "crazy" myself.

So thanks for hanging in there. You both did a great job of "pretending" to understand and agree with his "nonsense" conversations. With open face and interested looks.

As we were falling asleep last night, Gregory was already sawing zzzzzzz's. I lie on my side and watched him thinking how he is so far from the man I used to know and love. Sometimes I lie there and relive various parts of our wonderful life together: milestones, business ventures, travel, family, friends, theater, entertaining, Gregory's architecture, Michael's Museum. 

But at the same time, I am alright with the fact that it is what it is and I love him at each new level. Sometimes it is frustrating, sometimes it is incomprehensible, sometimes it is down right shitty (in all implications of the word :-) But again, IT IS WHAT IT IS, and for the most part, I cope. He seems happy and content. What more could I ask?

Love you more, etc.

P.S. While this was written for you two, I will share it on the BLOG because it is part of the continuing story. 

Milestone

Pleased to announce that this BLOG has just gone over 20,000 hits since its inception in June 2010. Thanks for helping.

Form Follows Funcion

Memory doesn't inform.

Telling doesn't inform.
Pointing doesn't inform.
Touching doesn't inform.
Showing doesn't inform.

Only doing for has for m.

So True

To Love

To truly love someone takes a great act of courage. It is the only event besides life itself which has a built in end and therefore brings fear and sadness as well as peace and joy. Either the love dies or the person you love dies and in some ways that knowledge lingers just a few steps behind all through your life.

This thought, as expressed by me, was part of the theme of last night's play at the Goodman.

“October 5 - November 3, 2013 In the Owen
Extraordinary performances”

• — CHICAGO TRIBUNE

This lyrical new work from “formidably talented” (The New Yorker) playwright Noah Haidle explores the passage of time and the fleeting pleasures of life through three generations of a Midwestern family. 

Change is in the air as Violet prepares to bring twin boys into the world. Inside her womb, her unborn sons contemplate their future, while outside her body her world is in transformation: her husband is secretly planning to leave her, her father is slipping into senility and her daughter has taken a vow of silence.Smokefall spans the lives of this family in an expansive poetic treatise on the fragility of life and the power of love.

A Double Header Day

Post 2 of 2 (At least so far today.)

After a lovely early morning at the Botanic Garden with our friend Jake; we dropped Jake at home, did a few errands, and finally arrived home ourselves. I was tired and possibly Gregory was over tired.

I got out of the parked car and went to the trunk to collect our belongings. I walked away from the car, as I sometimes do, as Gregory was taking a little longer than usual to get himself out of the car.

I looked back and realized he had forgotten to unfasten his seat belt and was trying (his not comprehending why the difficulty) to get out of the car.

I decided that this was an occasion for me to wait and to give him the time and space to figure out how to get himself unbelted. Things quickly got more complicated. He slipped his arm from under the belt without unfastening it and tried again to get out of the car. Next he took his gloves out of his pocket and tried again. Next his ear muffs and finally his scarf before he successfully got himself partially out of his coat while still restrained.

By now he had twisted himself so badly that I am not sure he would ever have gotten out by himself but I decided I needed to wait until he realized the trouble he was in and asked for my help. I stood by patiently with a gentle look on my face but he didn't notice, or look at me or even realize even, I believe, that I was standing there ready to help.

He didn't panic or get overly frustrated so I held my ground, waiting. Finally he looked up and registered that I was there. "I'm working on it." he said.

"I will be happy to help" I replied, "just ask ... 'Michael I need some help.'"

"I need some help," came the echo. So I put the parcels I was holding on the hood and proceeded to help him. He was so badly wrapped up in belt, scarf, coat, etc that it took me a while to get him unwrapped. And I had to force his body uncomfortably through this line and over that line and around the other. He was a little panicked by now and fought me a little. I had to calm him down and proceed.

By the time we were done, it felt like I almost had to tip him on his head while he was hanging out the car door but finally WE were free from restraint.

"You forgot to unfasten the belt before you got out," I by force of habit said. And due to his disability, I am sure my comment made no difference to him. We proceeded up the stairs to the condo. He had a drink of water and took a nap as did I.

Another lovely day on a lovely outing.

S-POPS

This has been going on for a while but seems here to stay so I thought I would post about it. Gregory has developed the Sandwich Perception and Orientation Problems Syndrome. If I were a doctor I could coin the name S-POPS and become famous. The symptoms present themselves in Gregory's being unable to orient a sandwich correctly to efficiently get it into his mouth for a bite.

Imagine eating a hot dog. One tips one's head left or right while holding the hot dog parallel to the plate and bites from one end towards the other end. Thus the mustard and especially the onions and pickle relish stay on the dog during the biting process.

Next picture a cheese berger. The round bun, containing the beef and condiments, can be held at 90 degrees to the plate as the bites take place and chances are the bun will hold the contents in place.

Both above scenarios present only minor problems if one is seated at a table and can hold the said sandwich over a plate. If items fall off onto the plate, they can be picked up with your fingers (even though the fork is sitting at the right of the plate) and consumed without much problem.

More perplexing is when the long, cylindrical hot dog type sandwich or the round burger type sandwich (or for that matter the square Wonder Bread type sandwich) are aimed toward the mouth at an impossible angle for not only 1) condiment maintenance but also for 2) basic biting.

The biggest problem by far comes when trying to eat a sandwich in the car. Sometimes the wrapper snuggled around the bottom of the burger like a diaper on a baby's bottom will help, but not always especially if the angle of sandwich presentation is plus/minus the required parallel or 90 degree angle.

Possible solutions: Do not eat in the car. Wear a bib. Don't notice the difficulty and drive bravely forward.

To Read or Not to Read

I am still trying to figure out how I can help Gregory continue to read at bedtime. Perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.

He often closes the book and cannot explain where he left off. When asked "Where did you stop? or finish? or end? (various words tried on various nights) he is unable to tell me. Often he points to where he began!

I think that he still comprehends although may not remember. So each period of time spent with reading is probably an isolated event, without his being able to paint the entire picture of the story, but he still enjoys his reading.

I am afraid that another problem is that Gregory might not any longer understand the mechanics of reading. Top to bottom. Left to right. Front to back. Turn page, begin again.

I show him where to begin reading, I keep an eye on the page he is on, I note where his eyes seem to be, and I mark the place he ended reading. But you can imaging what this means then when "HE" is reading and "I" am in charge!

Last night I dozed off while he was reading, when I woke and began to mark where he had left off, I saw that he was on the same page again. After success for the last week or so, I commented, "I cannot fucking believe that you are still on the same page! Did you loose your place? Do you remember where you ended? How are we going to do this?" Nicely done, don't you think! NOT.

What happens is that with these intermittant behaviors, with the ones that come and go, the ones which are here and unexpectedly evaporate ... I react according my expectations for what is a "normal" behavior not Gregory's ever changing "normal" and I freak. I speak out of anger, out of fear, out of worry for the future, out of defeat of all the work I did to try to help him hang on to the skill a little longer.

I do not respond this way to those skills and behaviors that no longer exist or more consistently come and go or are for the most part on their way out. I have developed lowered expectations for these type of interactions and deal with them as I support him. It is the "slaps in the face" or unexpected disappearances that freak me out.

I am working on it and have gotten better but I still am BELOW satisfactory on dealing with these kinds of occurrences. Most often my reaction is seated in the deep loss and sadness and grief and devastation that I feel for what he must be going through and then I end up treating him poorly.

So perhaps I should rehearse what I should have said instead of what I did say when he handed me his book on the same page it was on when I gave it to him an hour earlier.

Say nothing and have him begin in the same place the next night. Most likely I am the only one who will remember and I'll just have to swallow my despair which will be better than treating Gregory poorly and making him feel badly.

Bring on the next defeat...

Providing Some Hope for the Future

One Sign of Alzheimer's

Applying honey carefully to an empty plate while the toast is still in the toaster.

Simmering

Shambhala Publications

HOW TO SIMMER

Not acting on our habitual patterns is only the first step toward not harming others or ourselves. The transformative process begins at a deeper level when we contact the rawness we’re left with whenever we refrain. As a way of working with our aggressive tendencies, Dzigar Kongtrül teaches the nonviolent practice of simmering. He says that rather than “boil in our aggression like a piece of meat cooking in a soup,” we simmer in it. We allow ourselves to wait, to sit patiently with the urge to act or speak in our usual ways and feel the full force of that urge without turning away or giving in. Neither repressing nor rejecting, we stay in the middle between the two extremes, in the middle between yes and no, right and wrong, true and false. This is the journey of developing a kindhearted and courageous tolerance for our pain.

—Now in paperback! Living Beautifully with Uncertainty and Change by Pema Chödrönhttp://www.shambhala.com/living-beautifully-2.html

Meanwhile, I Die

Most nights I don't just go to sleep. I die.

There are so many things that can go wrong at bedtime and being tired myself I don't always handle them as well as I should. Although I am getting better.

The hallway from the front door to the living room runs parallel to our master bathroom. So it is sometimes difficult for Gregory to know where he needs to go to brush his teeth. This evening he was hanging out in the hallway and I asked, "What are you doing?"

As usual he couldn't really explain so I followed up with, "There isn't anything out there that you need to worry about now."

He disagreed.

I suggested, "Do you want to brush your teeth?" as he reentered the bedroom.

"Yes. That is what I was going to do."

So I pointed to the bathroom and said, "That is where you brush your teeth."

He proceeded to go into the bathroom and brush his teeth.

Meanwhile, I died.

This is a new behavior that I have just identified at bedtime, although at other times, when I tell him to go into the bathroom, or the guest bathroom, or the TV room, or the bedroom; he is not sure where I want him to go.

Brushing his teeth is also confusing. He can find the toothbrush and toothpaste (although never puts them back where they came from, I do that for him.)

Figuring out how to take off the cap on the toothpaste, squeeze a nurdle of paste onto the brush, wet the brush, and then brush and rinse works most of the time.

But every third, or seventh, or nineteenth time he get frozen at one or another of the steps so I have to unravel the mystery for him. The hard part for me is the coming and going of his intermittant ability and that clouds how I react.

Sometimes I can "swallow" my reaction, other times I comment on the absurdity of his behavior if only because after the fourteenth or fifteenth time I forget that he gets confused while brushing his teeth. I treat him like his "normal" was my "normal" and then apologize.

What I cannot do for sure is explain to him where he went wrong or why, for example, explaining to him that filling the cap with paste after taking it off the tube of tooth paste is not part of the process.

Meanwhile, I die.

Taking his daytime clothes off and putting them on the bench for me to put them in the closet doesn't always work. He stops short of his underpants and undershirt and if I say something like, "Take off the rest." That makes no sense to him. If I point, it doesn't always help. If I yank on the articles of clothing in question, that doesn't always work either.

Sometimes before I can get to him, he puts his sleep bottoms over his underwear, or puts tops or bottoms on backwards, or inside out. Sometimes he will recognize the problem but not know how to fix it. When he doesn't realize the problem, maybe I should just keep my mouth shut and accept his "normal" and not care how many layers he is wearing or in what direction they are facing. I am working at getting better at this but instead I try to help.

Meanwhile, I die.

In the next BLOG I will talk about reading at bedtime. This hasn't been working well for a while, I have tried many different approaches, sometimes they work, other times they do not. What I do know is that with all I have to do to get the house and Gregory put to bed, I no longer have time to read. I miss it ... and I die.

Caregiving E-Mails

A series of e-mails based on a wedding reception Gregory and I attended.

C
Thanks for taking such good care of Gregory. He appreciated you to me on our way home in the car. We BOTH did a good job taking care of him and not crashing into each other too much. I know you can understand that some times I "crash" into other helpers since I am on 24/7/365 and I am mostly on "auto pilot," not that I do not think you can do a good job because I KNOW YOU CAN! It's just difficult for me to go off-line!
m

• • • • •

Mikey,
I feel some uncertainty assisting Greg as I am unsure how much is too much or too little. I also have issues nuturing. I'm not very good at it.  Greg's comprehension has greatly deteriorated since last I saw him. I worry about you and the enormous task you tackle 24/7. I admire you enormously and love Greg dearly. I feel surprised yet happy to have been acknowledged by him.
Love you lots,
C

• • • • •

C,
You are good at nurturing even though you may feel you are not! You are always very good to Gregory and to me. When it comes to assisting him, there are no clear answers. That is what makes it difficult ... for me as well.  One does what needs to be done! He might be able to guide you a little, but otherwise you just have to make educated guess decisions. It is what I do even with our 37 years of togetherness.

From what I can tell you did wonderfully well this afternoon in keeping an eye on him, getting him some food and drink, etc. Luckily you do not have to do this too often, but at parties etc it is good to know that someone is keeping him safe and happy. That is all we really can do.

Your help allowed me to photograph for C and J's party and not worry that Gregory would get lonely, or fearful, or go hungry, or wander off. You did good!
Love you lots also!
m

Precious Gifts

If you regularly follow this BLOG, you will have seen a few entries from The Daily Word that I have shared (with some minor adjustments so they fit into my belief system.)

Sunday, October 13, 2013

LIFE

I am life. I am a precious gift, and I am worthy.

Life is a precious gift to cherish, to live, and to explore. Along with the gift of living, we are given have tools to grow and succeed.

Among these gifts, we are given have strength to keep going when times get tough. We find a storehouse of energy within us. Our hearts are infused with courage and steadfastness to keep our commitment strong.

We are given have wisdom and understanding to make right choices. God’s The Universe's light illuminates our path, leading us around, over, and through any stumbling blocks to fulfillment.

And we are given love by others. We have love to share as we cultivate the many blessings of life. We are life. We are precious. We are ourselves gifts to the world! WE ARE GOD.

Let anyone who wishes take the water of life as a gift.—Revelation 22:17

Computer Passwords and Dementia or Death

SECURITY

• passwords

Actually, you do need to share your passwords

Lincoln Spector@lincolnspector

• Oct 7, 2013 7:50 AM
• print

No one stays healthy forever. At some point, your loved ones will need access to all of your accounts. You can make that job easier for them.

No reader questions today. Instead, I'm answering a question that someone should ask: In our password-protected digital world, how do you prepare for that inevitable day when you die or otherwise become incapacitated?

This is no small problem. When you're gone, or have otherwise lost the ability to remember or communicate, loved ones will need access to your email, contacts, bank accounts, and more. Without your pre-planned help, this can be quite a challenge.

[Email your tech questions to answer@pcworld.com.]

If you don't believe me, check out Google's page for Accessing a deceased person's mail. You have to gather up and snail-mail several items, including the death certificate (each official copy of which comes with a price). Part 2 of the process "will require you to get additional legal documents, including an order from a U.S. court and/or additional materials."

It would be a lot easier if someone you trust had your Google password--and other important passwords, as well.

One solution is to print out a hard copy of your passwords and store it in a safe deposit box. But you'd have to repeat the process every time you change a password. Not so good.

Here's a better one:

Pick someone who you really trust. Your spouse is an obvious choice. Or a very close friend or relative. It could even be your lawyer or accountant. For brevity's sake, I'll refer to this person as your executor.

You'll need a password manager--a program on your PC that allows you to store your passwords in an encrypted database. You should have a password manager anyway, as I explained in Manage passwords, and not just on the Web; I also recommend a couple of them in that article.

Your executor will need a password manager, as well, although it doesn't have to be the same one.

Give your executor a few key passwords--those for your Windows and mobile logons, your email account, and, of course, your password manager. Make sure they store these passwords safely in their own encrypted password manager.

If your relationship with the executor is personal rather than professional, add their key passwords to your manager, as well.

I've done that with my wife. Her Password Safe database contains a section called Lincoln. Mine contains one named Madeline.

And, of course, when you change these few key passwords, make sure to put the new ones in the other person's password manager.

ONE Diagnosis every 68 Seconds

Believe: Part Three of a Trilogy

Children sleeping, snow is softly falling
Dreams are calling like bells in the distance
We were dreamers not so long ago
But one by one we all had to grow up
When it seems the magic's slipped away
We find it all again on Christmas day

This makes me cry three.

Believe in what your heart is saying
Hear the melody that's playing
There's no time to waste
There's so much to celebrate
Believe in what you feel inside 
And give your dreams the wings to fly
You have everything you need
If you just believe

Trains move quickly to their journey's end
Destinations are where we begin again
Ships go sailing far across the sea
Trusting starlight to get where they need to be
When it seems that we have lost our way
We find ourselves again on Christmas day

Believe in what your heart is saying
Hear the melody that's playing
There's no time to waste
There's so much to celebrate
Believe in what you feel inside 
And give your dreams the wings to fly
You have everything you need
If you just believe

Just believe