Another Mother (Project)

I've learned there is another The Mother Project. Tierney Gearon took a series of photos of her mother, who lives alone and suffers mental illness.

JRSB/DWN

In response to public demand.....

Here is the story of "when Jenna first met Dennis" which Jenna told at Dennis' birthday dinner last night.

Jenna met Dennis when she was working behind the counter at Posteritati, Sam Sarowitz' movie poster store in Nolita  (North Little Italy). Dennis came in and inquired about a certain movie poster. Then he looked around at things in the store and left.

When she next met him, it was five years later. I was introducing her to him in my kitchen in Portland.

Marcie Sims Appreciation Days

The larger experiment being attempted by the Fremont Street Center for Healthy Aging addresses the issue of aging in place. Can the care for a late stage Alzheimers patient be provided within the everyday routine of a normal family household? Paper diapers, superb health insurance coverage, and professional caregivers during the day are all part of what has made the experiment at Fremont Street work thus far. 

The mini-experiment we are conducting within that larger one is - can we live without Marcie? 

The first day of Marcie's vacation, Jenna arrived and cared for Mother in the AM. Charlie spelled her in the PM. Both grandchildren (Charlie is a grandchild-in-law, I guess) know Mother very well. She got lots of attention.

As I reported, the next day Mother woke up with one thought on her mind - where is Marcie? We had arranged that Margaret come in that afternoon, 1:00 - 5:00, so that day didn't feel different from the ordinary.

Yesterday, Wednesday, is the day I am most busy with my job. Dennis took responsibility for caring for Mother the full day, and it went off without a hitch. But examining the exact contents of the day may be revealing, when it comes to understanding what makes a day with Mother- and no caregivers - work.

The biggest pressure on caregivers, both professionals and family members, is the stress and tedium of constant exposure to the workings of a disabled mind. The non-Alzheimers brain, the one you and I possess, reacts with alarm to the cognitive misperceptions and communication roadblocks which are part of everyday life with someone with Alzheimers. It makes perfect sense to avoid this stress, and most people do.

The consequence of this social avoidance is that the person suffering Alzheimers, who is already socially disabled and severely limited in their ability to make contact, is given even fewer opportunities to connect with the larger family of human beings. Someone who needs more gets less. 

Our theory, here at the Fremont Street Center for Healthy Aging, is that placing a person with Alzheimers in the middle of a functioning family is one way to effortlessly ( or relatively effortlessly) increase the number of hours they receive social contact.

On days when Dennis and I are away at work, and when Jenna and the kids do not visit, the house is pretty still, so Marcie and Margaret take Mother on outings so she can have the contact with other people.

Yesterday the day went really well for us, without a professional caregiver here to provide respite, but let's look at just what happened during that day.

While I was gone in the morning, the Kaiser nurse arrived to do a blood draw. This week the City of Portland is tearing up Fremont Street right outside the house, so there has been activity and crews bustling about right outside the window. Damage to the cable lines meant a Comcast technician spent the morning going in and out of the house checking to see if he had re-installed the cable line correctly. Plus Dyana was here doing her monthly cleaning. So Mother had three visitors, and the house was full of activity.

When I got back in the afternoon, Dennis, Mother and I went over to Perry's, across the street, to celebrate Dennis' 55th birthday. We were the only people there. Mother had a root beer float and some Thai chicken. It was Happy Hour, and we were very happy. 

Mother raised her glass to Dennis.

We returned home in time for dinner. Jenna brought her kids over and we sat around the dinner table eating hamburger casserole, and vegetables from the garden. Dennis and Jenna swapped stories about walking to school, and Jenna told the story of when she first met Dennis.

Sam, Joy, & Bart practiced climbing the rope which hangs in Mother's bedroom doorway. Joy helped me water the garden. Dennis explained baseball scoring to Sam while they watched TV. Bart divested himself of his pants, proving his genetic connection to Tom Richardson, who did the same thing at his age.

Mother went to bed at 8:00 on the dot. I don't think she had a boring/bored minute throughout the whole day.

Now the point of this story is this: that much hustle and bustle is what is takes to replace Marcie in our lives.

Mother has a great day with she gets visits from:

1. A Kaiser nurse

2. A Comcast technician

3. Dyana, our home environment specialist

4. City of Portland road crews outside the house

5. a root beer float at Perry's 

6. One grand-daughter and three great grandchildren

On a day when Mother has this much flotsam and jetsam of human existence flowing in and out of her life,  she doesn't need the attention of a highly skilled caregiver. But notice the convergence of unusual factors. Because we can't expect the road to be torn up everyday, or the birthday of a family member (a blood draw, a downed TV cable) to happen everyday, we have Marcie and Margaret to help Mother make it through the barren desert that is her social life.

Because Margaret and Marcie do such a great job at keeping Mother supplied with opportunities to be social, Mother was not frightened by the pounding of the road crews, perturbed by the technician rooting around her living room, uncomfortable sitting in a booth at Perry's or unnerved by the presence of three young children, all talking at once, at her dinner table.

Because it is Marcie's vacation,  we are renaming this part of the summer Marcie Sims Appreciation Days. (When Margaret's vacation arrives in late August we will do the same for her.)

This post is a tribute to Marcie, who is on vacation, taking time off from a job well done!

Mother Has Her Children On Her Mind

Dennis was helping Mother dress for bed. This can be a very slow process. He asked her to sit down so he could take her shoes off. She said "I can do that." Dennis said "But isn't it nice to have people do things for you?" She said  "I have children. I hope they know that."

Mother has been talking more than she did, but saying "I have children" twice in a week - after never mentioning us at all - this is new.

Mother Remembers The Important Things

As Marcie was preparing to go on vacation, I said to her, only half joking "Don't worry about us, we'll be OK." She laughed but said she actually had been a little concerned how Mother would cope.

Yesterday was our first Monday without Marcie since February 11, the day she arrived. This morning Mother woke up and came out and asked Dennis "Where's Marcie?"

Mother does not call me by name, or Dennis. The only person she calls by name is Jenna. And now Marcie.

More research results

Here's an article in USA Today which addresses some of the issues which lie at the heart of the research conducted here at the Fremont Street Center for Healthy Aging.

Great Minds, Thinking Alike

A study in Kansas bears out what we have found to be true here at the Fremont Street Center for Healthy Aging.

" They discovered that when nursing aides communicated in a kind of baby talk for seniors - using a high pitched sing song tone, comments like "good girl", diminutives like "honey" and language that assumed a state of dependence "are we ready for our bath?') - Alzheimer's patients were twice as likely to resist their efforts to help.

Patients would turn  or look away, grimace, clench their teeth, groan, grab onto something, cry or say "no" - behaviors that can be read as indications of distress at being patronized or infantilized, said lead researcher Kristine Wiliams, an associate professor at the University of Kansas School of Nursing.

"Communication can really impact care." she said."

The patients actions described above  - turning away, grimacing, groaning, saying "no" - is normal behavior about non-Alzheimers patients ( most of the world) when confronted with rude or unwanted behavior on the part of others. In other words, this is normal behavior, not caused by Alzheimers, but caused by inattentive care.