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.

Friday, July 26, 2013

Looking for Home

What makes a home? I have been thinking about this recently especially in relation to my "research" on future possibilities for Gregory. I have visited several Memory Care Facilities so I can get an idea of what is out there. I think that Gregory is far from needing to be placed in one but it is always good to be prepared.

As long as I can physically take care of him, he will stay at home with me. As far as the emotional ride and how it affects me, that is up to me to keep in check. Also there are many options available to us before placement like home health care, a live in companion, visiting nurses, etc.

After visiting Arden Manor in Northbrook and Sunrise Manor in Wilmette it has taken a while for me to be able to put to words the image in my mind which I took away from the visits. I am sure this time lag is due to the emotional content of my processing.

Both places were clean and orderly. Neither smelled like "old people" or urine as my boyhood memory served from when I used to visit my Grandma Lindenbaum at her "old people's home." I remember my mother feeling guilty at putting Grandma in the home but mom could no longer provide for her mother's needs and it was probably a good decision. While my decision will be a hard one if I have to make it, I will not feel guilty.

In some ways, as I walked the halls of the memory care facilities, I was shocked that I was thinking in terms of Gregory. In terms of my parents, OK, makes sense. But in terms of my boyfriend, my lover, my life companion, my most important other person in the world, my peer ... FREAKY!

Luckily mom and dad were able to "find their way out" without having to go to a "home." Gregory's dad avoided the "home" and Helen did need an assisted living environment but she was alert and active and involved enough in life that the facility she was at was really more like a smaller apartment with a restaurant down the hall and help available as needed.

Both Arden and Sunrise were nicely furnished with little private areas and nooks, protected gardens and walking paths, TV's, restaurant type dining rooms, porches, sun rooms, activity rooms, and even barber shops.

Arden was set up like four neighborhoods surrounding the public spaces with each one decorated in a different theme and different color for easy recognition by the residents.

Sunrise was more "institutional" with the more alert, active people having their rooms and public spaces on the first floor and the more disabled people living on the second floor. Why in facilities of this type do the more disabled people end up being higher in the building?

Arden and Sunrise are specifically for memory care (nicely euphemistic) so some of the props placed around are stuffed animals, play areas, cribs & baby dolls, children's toys and puzzles. While seeing these things was mildly disconcerting. 

These types of items do go along with the research into what people with dementia need as they regress to child like behaviors or earlier parenting skills for their own children or realistic delusions.

Sunrise has a resident cat which is a nice touch. 

In both places, all exit doors are secured and need a code to be opened. In the event of emergency, the panic bar sounds an alarm and opens after 15 seconds, the idea being that staff can attend to the emergency (if there is one) but people could escape in case of fire within 15 seconds which wouldn't be too long a wait. 

Arden has extensive gardens all around the building and Sunrise has fewer. But all of the gardens are open to residents, secure areas, monitored every 30 minutes, and locked at night or in bad weather.

Meals are served with a choice from two or three entrees, help with eating is provided as necessary, snacks are always available including freshly baked cookies (I had one,) fruit, juices, coffee, etc. Often specific items can be requested like a peanut butter and jelly sandwich or butterscotch pudding.

Resident schedules are respected so the can get up early or sleep in. They can get dressed when ready and their breakfast is held until then. Lunch and dinner is served at the same time but if the resident isn't hungry it can be covered and refrigerated.

All resident rooms in both places are checked and each resident spotted where ever they are every hour during the day. At night rooms are checked every two hours. If necessary they are reminded every hour, "Do you need to use the bathroom?" 

Both places have daily activities which consist of exercise, arts & crafts, discussion groups (should be interesting to witness,) movies, TV, music hours, guest performances, and field trips.

A relaxed attitude towards the usual outward demonstration of dementias was comforting. When asked if people steal from each other the response was, "Oh yes, sometimes. But we know who does the stealing and we periodically check their room and return the stolen items." 

What if a meal left for someone in the refrigerator is eaten by another resident? "Oh we will just make a new one. Apparently the interloper was hungry." 

What if a person gets hostile or violent? "We try to find out what is troubling the person. Their acting out is usually part of a lack of communication or understanding and we can handle that. In extreme cases we ask the doctor what he might suggest, but that rarely happens."

Chatting with the intake person, it seems that dealing with dementia patients is so easy. Maybe it is for them because the interactions are not loaded as they are with loved ones who are witnessing the decline. Also it is what they are paid to do and they get to go home at the end of shift. For us caregivers it is a 24/7 ordeal.

The same care givers work with the same residents all of the time. Each resident has a few workers if only to cover the daily shifts and the workers days off etc but the caregivers and the residents get to know each other really well and the specific needs and schedules etc work well.

Both facilities work with their residents through death including hospice help when that time comes. If a person is in great need of medical attention then the person has to go to a different kind of care center, which makes sense. But most of their residents who die of the normal process of dementia die out of the home. Sad but also reassuring.

Arden has a fixed fee that only goes up based on cost of living, not a resident's decline. 

Sunrise has a room fee which includes cleaning, meals, and general care but as the needs increase each one has a fee attached. For example if a person needs periodic reminding about bath rooming there is a fee which further increases if the person needs "Pampers," or to be cleaned and changed, etc. Twice a week showers are included but if a person needs to shower more often there is a fee. Medication administration has a fee. 

Both places would be acceptable to me from my surface investigation. Arden seems to be the better, more active, more opportunities of the two. But Arden is a 80 minute drive round trip. Sunrise is just in the suburb next to Evanston, 30 minutes round trip. To be able to visit with Gregory often, especially as I get older, the long drive would be prohibitive.

One deal breaker is the other residents themselves. They are old. Median age is 80 and up. Gregory is 65. Of those residents who are still alert, their alertness is an old age alertness, somewhat cloudy and slow. Gregory is young and vibrant by comparison. 

The final deal breaker is the cost. All memory care facilities of this type are private pay. Medicare and Medicaid do not pay anything towards this type of care. They kick in only when the person is in such medical need that they are in a nursing type center. Would you believe approximately $6,000/month. Ouch!

I think what I was feeling most, however, in seeing these places as future homes for Gregory is that based on both quotes below, for the Alzheimer's resident they are only houses, not homes. It takes a mind and a memory and an active interaction with one's life and with other people to make it a home. 

That is what I was feeling strongly and it made me very sad. Both were lovely houses but home was nowhere in sight. Life was not being lived, only supported and made safe which may be all you can do for someone with advanced Alzheimer's. While it is said that interactions with others is important, I did not see any residents talking to or visiting with another. Hopefully the residents have loving family that visit often.

For Gregory our home is vibrant and his limited abilities do not get too much in the way of his feelings of having a good quality of life.  His life is safe and predictable. His routines are meaningful and his days full. We interact with each other often, enjoy our friends, go out to eat, and attend plays, musicals, operas, and other events. We even (although I do all of the work) entertain some 50+ people at July 4th birthday parties, Christmas parties,  BBQs, etc.

Many other options, cheaper ones, would be to continue having companions spend some time with Gregory and giving me time for errands and personal space. When the time comes; home health care, live in help, and/or visiting nurses should provide the needed services. As long as Gregory continues to be aware of himself and his environment, home matters and I will continue to provide that for him. Why? Because I love him.

•  •  •

A house is not a home unless it contains food and fire for the mind as well as the body. Benjamin Franklin

Never make your home in a place. Make a home for yourself inside your own head. You'll find what you need to furnish it - memory, friends you can trust, love of learning and other such things. That way it will go with you where ever you journey. Tad Williams.

Death by Cake Server

Maybe my problems will be over sooner than I thought. This morning Gregory attempted to get his toast out of the toaster using the metal cake server that was on the counter next to the blueberry pie. Am I being mean?

Thursday, July 25, 2013

Yoga Nidra

You have read previously about my experiences with mindful meditation and Yoga Nidra with Corinne Peterson. Today Gregory and I had another joint session with the focus on Gregory. I was just along for the ride. If the experience could provide Gregory a time and space away from his Alzheimer's, without having to think about it or cope or fight to bring a word or idea up to the surface for air, then the experience was worth while in my opinion. And both Corinne and I feel we were successful.

She led the meditation with great skill, understanding, and compassion. We started with some aroma therapy using a scent called "Joy." She gave Gregory ample time to process the simply stated suggestions like breathing in time to the going up and coming down of a ferris wheel (one of Gregory's favorite rides,) or taking a walk through a forest with the sun shining through the trees and periodic sightings of animals or hearing birds chirp. We looked at feelings of joy and sadness and back to joy so we could experience the full spectrum of emotions but leave on a positive note. She planted suggestions by which she could measure Gregory's involvement in the process and being able to connect language to action, for example: moving ones fingers and toes, opening and closing one's mouth, stretching, smiling. The session ended with gentle music and her gently ringing a bell five times.

Even though the meditation was not as deep or productive as I am usually able to achieve, for me just 30 minutes time out from life was worth participating in the experience. When Corinne was gently bringing us back to the meditation space and calling us back to awareness, I arrived earlier on purpose so I could see how Gregory was doing. The peaceful expression on his eyes-closed face, the relaxation in his body, brought tears to my eyes. Feeling that I had been able to help create and provide that experience for Gregory and the ease and joy with which he experienced the session made me want to weep but I held it to quiet tears.

When Corinne asked us how the session went, Gregory replied "Wonderful!" We will do this again sometime in August.

Wednesday, July 24, 2013

Changing Changes

The "Pocket Drawer" which was a wonderful invention on my part when we moved into the condo has seen its sunset. The concept no longer works. That makes me sad and I have fought its demise for a month or more but yesterday, finally, I let the Pocket Drawer Credenza take its last breath.

The credenza, which sits by the front door of our condo, is a beautiful piece made of black bamboo. has a long shelf just below the top of the piece and below, three drawers.

The top is for a fast, temporary drop off of cell phone and/or keys, and for holding incoming and outgoing mail. In the center there is our Buddhist Shrine with three singing bowls, Angel cards with motivating words, pewter coins with more words on which to meditate; plates with incense, water, earth, fire (candle,) and food. There are also two gray/green miniature pottery pieces made by our God Son Isaac while he was in Japan. Finally there a Japanese bell that has a sweet ring that sounds for quite a while during which time we pause to meditate on the words selected for the day. Every time we enter or leave the condo we pause at the shrine.

The shelf holds books that have overflowed our other bookshelves and also books that need to be returned to friends. You don't want to see the accumulation of dust on the shelf and books but since it is a narrow shelf, you cannot experience the build up unless you are kneeling on the floor.

The left drawer is Gregory's, the right drawer is mine, and the middle drawer holds our emergency information, a crank-up weather alert radio, several flash lights, and a power bar which receives the plugs of the charging cords that begin in Gregory and my drawers.

In our personal drawers we keep what I call our "Pockets" for overnight storage and charging. They hold our wallet, keys, cell phone, loose change, Chapstick, cough drops, medical alert necklaces, etc. Ironically (or not) my drawer reflects my personality and is chock filled with STUFF. Gregory's is spare and only contains the essentials.

The demise of the "Pocket Table" is taking place in the drawer area. As his Alzheimer's progresses he continues to loose word associations. So when I would say before getting ready to leave the condo, "Fill your pockets" or when getting ready for bed I would say, "Empty your pockets" he used to be able to follow through. No more.

Slowly he lost the "Pockets" associations. He would start, get distracted, and leave most of the items behind. At times he didn't know what I meant by "Pockets." Sometimes I would ask him to put something on the "Pocket Table" and the odds became better that he would not be able to follow through.

I began keeping an eye on his "Filling" and his "Emptying" and would point out when he overlooked a part. Then I started checking and finishing the process for him with or without pointing out the overlooked items. Sometimes when in a hurry, I would just fill or empty his pockets for him.

Recently he has been putting his wallet in the center drawer or in my drawer. He puts the cell phone on the top next to the singing bowls. After realizing that every morning and every evening was a battle, we discussed ways to make it easier. Since he no longer really needs to carry keys because I always have mine, we discontinued that.

Instead of his asking for me to show him how to put on and take off his "Medical Alert Necklace" we resorted to a bracelet (although less stylish) that he keeps on all the time. His comment (while I expected a fight) was, "Oh that will make it easier." He no longer carries loose change.

He still carries his wallet for ID purposes and his cell phone because he can still answer it if he is with his companion and I call him. He can no longer use the phone to call me. When we leave I hand him his phone and wallet and when we come home I take them and put them into the drawer for him. Automatic on my part not depending of the maybe of his.

While I feel bad that I seem to be taking away what little of his independence is left and while I end up having to spend more energy checking on him and waiting until I see that the action is accomplished, it feels good not to have to spend the energy being angry or frustrated and not needing to yet again explain what he needs to do. I just do it for him. I don't mind and apparently he trusts me enough to not mind either.

Tuesday, July 23, 2013

Cats and Knock Knock Jokes and Farts

This morning while sitting at my computer, Gregory stood there quietly waiting after he was finished shaving. I realized that I had forgotten to put his underwear out on the bedroom bench. 

I got up to get them, kiddingly saying , "Oops I failed you by not living up to my responsibilities." 

Going into the closet and continuing my monologue, "I will leave the closet door open so the cat can  try to sneak in again." (Which she does every single time the door is open even though she knows the closet is off limits. With a gentle "No" she always turns around and leaves.

Then I mused, "I guess the cat is a lot like you, Gregory, she always forgets the same thing, over and over."

We both laughed.

• • •

We watched the movie South Pacific last night. An old "Knock/ Knock" joke came to mind and I tried to tell it to Gregory. 

The problem was he did not remember how to do a "Knock/Knock" joke, so I tried to teach him. I say, "Knock/Knock." You say, "Who's there?" Then I say the punch line.

I said, "Knock/Knock." He replied, "Yes?" We laughed.

I repeated, "You are supposed to say, "Who's there?


"What is it?" he asked. 

We laughed some more. 

This went on for several iterations. The laughter turned into giggles then we couldn't stop as we both were tickled with the progress of our conversation.

Finally I just gave it to him:


"Who is there?"

"Sam and Janet."

"Sam and Janet who?"

I sang: "Sam and Janet evening. You will see a stranger. You will see a stranger across the crowded room." etc.

"Not a very good joke," Gregory replied.

• • •

This mooring while Gregory was shaving I was sitting on the pot. (Spoiler: FARTs ahead.) I gave a deep fart and Gregory mimicked the sound with his mouth. We both were quite tickled. I gave a long, sweet, high fart and Gregory imitated it again. We laughed and laughed. He was very proud of himself for having made a joke. Laughing is fun. Almost as fun as farting.

Monday, July 22, 2013


Some might call it confidence, some might name it faith but if it makes us brave a label doesn't matter for it is the thing that allows us to embrace life itself.

"The Midwifes." PBS Season 2   Episode 2

Two Second Forgetting

Every evening I pile Gregory's slippers,
Sweats, and underwear on the bench,
So he can get himself going in the morning,
Hopefully without my help, my assistance.

Every morning he asks anyway, "Are these mine."
Two second forgetting isn't his fault.

For a while I resented having to reply, "Yes!"
After having gone to the extra trouble,
Having laid out his stuff ahead of time.
Now I just say, with understanding, "Yes."

That makes it easier, without resentment.
Two second forgetting isn't his fault.

Sometimes he takes part of the pile
into the bathroom and for some reason
gets distracted and leaves it there.
"Something is wrong." he will say.

"Yes," I will say. "Look in the bathroom. 
Two second forgetting isn't his fault.

After thinking a few seconds or minutes
He returns to see what he left behind.
Sometimes he finds what he is missing
Sometimes he cannot see in front of his eyes.

With understanding I will get up to help.
Two second forgetting isn't his fault.

Sometimes the undershirt is on backwards,
Sometimes the sweat pants are inside out.
Sometimes things are in the wrong order,
And sometimes in the wrong place!

So I smile. I didn't always used to smile.
Good for me. Understanding is easier.

Two second forgetting isn't his fault.
Two second forgetting isn't his fault.

How Does It Feel

Like a switch being turned off
Like a fog rolling in
A numbness overtakes me
I stare into the distance.

An emptiness that feels like sorrow
A pain that feels like an ache
A sadness overtakes me
I stare into the abyss.

Without an understanding
Of what really happened
Or a way of explaining
What actually went wrong.

And then the clouds disappear
and life reenters the picture
with dishes to be done
and laundry to be folded.


Gregory is my hero and I guess I am his.

Friday, July 19, 2013

This is the Face of Alzheimer's ...

... and I am grateful for what we still have!

Andalucia, Spain


Camp Madron
Buchanan, MI


60th Birthday
Evanston, IL

Puerto Vallarta, MX

Puerto Villarta, MX

Puerto Villarta, MX

Puerto Villarta, MX

Petrified Woods
Racine, WI

Evanston, Il





Lacrin Valley, Spain

Evanston, IL

Puerto Villarta, MX

Puerto Villarta, MX

Louve Museum

Eiffel Tower

German Embassy

Veaux le Vicount

Evanston, Il

Outside Rome, Italy

Praire Joe's
Evanston, Il

Racine, WI

Lyric Opera

Cirque du Soleil

Saugatuck, MI

Evanston, Il

Evanston, Il

Tuscany, Italy

Puerto Villarta

Northbrook, IL

Battle Creek MI

RIVA on Navy Pier

Bernice P's Balcony

Piano Cafe at the Art Institute
Looking out over Millennium Park

Papa Gullio Restaurant

Lyric Opera Tech Rehearsal

Super Dawg Restaurant
Northbook, IL

Steak 'n Shake
Evanston, Il

Lyric Opera Dress Rehearsal

Kris Kringle Christmas Market

Piano Concert
Skokie, IL

Evanston, Il

Goodman Theater Intermission

G's 60th Birthday Party
Evanston, IL

Ryerson Woods Forest Preserve
River Woods, IL

Louisville, KY

Kalamazoo Zoo
Kalamazoo, MI