Did You Hear The One About...

C

Good chatting with you this morning. Look forward to seeing you at C and J's party if not sooner.

I don't mean to be evasive when someone asks, "How are things going? How is Gregory doing?" 

I usually refer people to my blog because that is the way, if they choose, they can keep up with how we are doing. It is difficult to summarize each time someone asks, it is difficult to surround myself with those vibrations over and over ... so it is easier to say, "Hey check out the BLOG!" 

I know people are busy and do not want to be in front of their computer any more than necessary, also I understand that people have their own difficulties and don't necessarily want to live mine. But really, the best way to keep tabs on us is to now and then check into http://mhorvichcares.blogspot.com.

A recently revealing one is: http://mhorvichcares.blogspot.com/2013/08/overwhelmed-through-my-tears.html

Love ya,

M

P.S. You might even see a really good BLOG entry that features an e-mail that was originally written to you. Love you guys lots!

No Way Out

—Pema Chödrön, from The Places that Scare You http://bit.ly/10PLYos

WISDOM IS INHERENT IN EMOTIONS

One night years ago I came upon my boyfriend passionately embracing another woman. We were in the house of a friend who had a priceless collection of pottery. I was furious and looking for something to throw. Everything I picked up I had to put back down because it was worth at least ten thousand dollars.

I was completely enraged and I couldn’t find an outlet! There were no exits from experiencing my own energy. The absurdity of the situation totally cut through my rage. I went outside and looked at the sky and laughed until I cried. 

In vajrayana Buddhism it is said that wisdom is inherent in emotions. When we struggle against our energy we reject the source of wisdom. Anger without the fixation is none other than clear-seeing wisdom. Pride without fixation is experienced as equanimity. The energy of passion when it’s free of grasping is wisdom that sees all the angles. 

Drive All Suffering Into One’s Ego

Drive All Suffering Into One’s Ego
Original teaching by Pema Chödrön
February 2013 in honor of her 77^th birthday

Reinterpreted by Michael Horvich August 2013

It is hard to separate one’s ego from what one thinks of as one’s self. So this is not about blaming oneself for one’s suffering but rather one’s ego which controls self. One can do this by distinguishing between what is causing you to suffer and what is the trigger. What is the difference between the two? The cause and the catalyst.

We have preexisting propensities which are like seeds stored in the unconscientious. One acts in the same predictable way as though it is a rut one is stuck in. Someone says something that hurts your feelings for example, and it triggers a predetermined propensity to feel bad, even if what the person says is not true. Just seeing that person or remembering what they said can trigger the suffering. The person is NOT the cause, the person is the trigger.

If you want to wake up, be free of suffering, what must you learn then? You need to work with the propensity NOT the trigger. It is so easy for our attention to go to the thing which triggered the feeling not the cause of the feeling. Triggers activate preexisting propensities. One needs to look closely at the cause, at the preexisting propensity, NOT the trigger.

Often the trigger is no longer valid or in reality is not about the suffering anymore but it none-the-less triggers the preexisting propensity.

We cannot get rid of the triggers until we have studied the propensities. By allowing the triggers to “get you” you, you strengthen the propensity. Distinguish what triggers your suffering from your preexisting propensity and you weaken its power over you.

To work on this, don’t blame the propensity, recognize it and acknowledge it and be conscientious that the preexisting propensity continues to affect your suffering. It is a HUGE step when you can distinguish between the trigger and the propensity.

Let the story line go as you would do when meditating. In meditation you are focused on your breath, you have a thought, you note or recognize it, you go back to focusing on your breath. You do not have to act on your thought or give in to it. You do not have to fight it, repress it or ignore it. Just note it, recognize it, go back to your focus.

The same can be done when a someone or something triggers a pre-existing propensity. Label the feeling (propensity) when it occurs. Locate the pain that leads to the propensity. When you locate the pain, send your unconditional love. Do not blame the propensity, send love. Do not be harsh or repressive against the feeling or yourself. Use a hand gesture to the heart or the cheek as a way of sending it love. Most propensities are based on fear, fear of danger. The way to work with the fear is to help it relax by sending unconditional love.

By recognizing the propensities that are triggered and then sending unconditional love and comfort to the propensity you will help it to relax and loose its strength over you and eventually the suffering it causes.

The Long and Short of It

If he can no longer read at bedtime, he will not read at bedtime.
If he can no longer take his vitamins, he will not take vitamins.
If he can no longer floss or brush, he will not floss or brush.
If he can no longer fold the towels, he will not fold towels.

But if he can no longer eat, does that mean we can just starve?
If he can no longer toilet, does that mean we can just stop shitting?
If he can no longer shower, does that mean we can just have B.O.?
If he can no longer use words, does that mean can just live in silence?

He looks and walks and sits and yawns and sleeps like a real person
But he doesn't understand or communicate anymore like a real person.
He doesn't function or think or understand anymore like a real person
He is broken yet refuses to run down and stop trying to be a person.

If we can no longer live, does that mean we can just die?



I know that the recent BLOGs have been down and depressed. Gregory seems to be going through a lot of loss again recently. I hope he will level out soon and hold, so I can figure how to respectfully, lovingly, supportively be there for him. Right now I do not know how to work with these new losses. Give me a few more days or maybe a week, OK?

First Day, New Companion

On Aug 27, 2013, at 12:57 PM, A wrote:

Hi Michael,

Tomorrow is the first time when I will be spending time with Greg alone. I am super duper excited about it and also a little anxious. Last minute checklist, what all are things that I have to keep in mind. I have read the docs and some of the blogs, I just need some inputs from your experience and also a short list of things that you think would be nice to do.

Looking forward to your reply.

Thanks and Regards,      A

A,

The anxiety is expected. I am a little anxious as well. Gregory, with his Alzheimer's BUFFER, has no fears or doubts. 

First, when I send a calendar notice, please let me know as soon as possible that you received it and that the day and time are OK with you. Often we will book our times when you are here so we can look at the calendar together. I want to be sensitive to your schedule and needs as well as "locking in" my schedules.

Getting used to being with Gregory and what to do will take time and experience. As you get to know his abilities (or lack of them) you will be able to make your decisions more easily on how to spend your time with him. You will be able to guess at what he is trying to say. Give him time to formulate his needs. Try not to offer too many suggestions at a time. Sometimes understand that "trying to help" complicates things.

Also, whenever a question comes up you should feel free to text or call. Even little details like "Where is the milk?" After your time with Gregory, you and I will make some private time to debrief and address any questions/issues/concerns you may have.

PRIMARY: Gregory's safety, especially when outside. Never leave him alone. For example, you do not have to watch him pee but be in the same room at the restaurant. At home he can navigate the condo by himself but for example you wouldn't want to let him take out the garbage by himself.

On your first time together I would suggest you not venture too far from the condo. Take a walk to the lake. It is not too far, G loves the lake. There is a lot to see and watch there. People, the dog beach, etc. Sit in the shade and watch the world go by. KEEP AN EYE FOR FATIGUE REMEMBERING THAT HE HAS TO WALK THE SAME DISTANCE BACK HOME. MAKE SURE HE TAKES A WATER BOTTLE. It is supposed to be less hot tomorrow. 

Often G like to take a nap (either on the sofa or in the bedroom) when he gets back. 

You could also sit on the balcony, look through a book that Gregory grabs for you to share. Again, while all his memories and intelligence still exist, the Alzheimer's prevents it from being accessed. 

I'll show you how to use the HVAC (Heating Ventilation Air Conditioning,) if he or you are too cold or too hot. Also this time how to use the coffee machine and where the cookies are. Next time I'll show you how to run the music. On Saturday we will do a Swimming dry run. Next week we'll look at the TV and running DVD's.

Every now and then, (a couple hours) and especially before the walk, suggest that Gregory use the bathroom.

I usually post these kind of e-mails on my BLOG because it helps our family and friends and readers keep in touch with our "progress" and sometimes offers good suggestions for when they are with Gregory or other loved ones who are dealing with dementia. 

Looking forward as well,

m

Sit With Me A While

Hi. Wanted to share my book of poetry with you, many of the poems are informed by my same sex partner Gregory and my journey, voyage, roller coaster ride, life with Alzheimer's.

Click here to see more about or to order the book of poetry.

A Letter To A Friend

S,

I appreciate your comments. I have never entertained the possibility that we get fewer invites. We always enjoy seeing you and being with you (and your and M's making it easier to see B.) As we discussed gearing down G's yearly birthday July 4th party, I certainly understand "little time and less money and energy." 

Our life has become more narrow. We do enjoy our opera, legitimate theater, musicals, NETFLIX, and the movies. I enjoy cooking and experimenting in the kitchen. Having people in now and then is still fun but getting harder. Being with people becomes a little more difficult partly because of Gregory, partly because of the extra energy I have to spend to monitor and provide for G, tell my stories and his, etc.

I am definitely feeling a little older and a little more tired but not to the point that I am "in trouble." Also, when he has had a difficult day and/or I am feeling down it is hard to be with people and keep up the positive front and the running commentary. Being home and alone and quiet works well. We depend on listening to music a lot to disguise the fact that we no longer can have two sided conversations but also because we enjoy the music. It has a calming effect on both of us.

Current changes, for which I am still trying to figure out how to compensate, is his not knowing how a book works, so no bed time reading; increased difficulty dealing with too many items on his dinner plate; perseveration in some minor annoying behaviors; continued loss of even more common word associations;  needing more of my attention as his "Bowel Coach." I'll not go into detail about the later.

Yesterday I fixed G his five o'clock coffee and cookies, placing both on the counter and showing him. He took the cookies to his desk, ate them. Later when I was preparing dinner I saw that he left the coffee behind on the counter, not even realizing there was no coffee with his coffee and cookies. 

Your offer to "be there" and in effect your "being there" is generous and gracious and in itself makes my life nicer/easier. Right now that is about all you can do and should consider it well received. 

I do like the idea of Gregory and I picking you up and driving downtown to a hot dog and movie show with B. The new companion should make it easier so I can get away and have some time to myself and allow me to run errands without having to bring Gregory along all the time. 

Soon. Love to M.

m

It Was Perseveration I Know (Sung to the tune of ...)

Gregory woke at 9:00 and did his morning bath rooming. After "wiping" he pulled up his sleep shorts, stood at the sink, took a "wet wipe" out of the box and didn't know what to do with it. I was still in bed and watched from across the bedroom. First I wanted to see what would happen. Second I knew I couldn't explain the situation to him and probably would have difficulty showing him. Third I didn't want to interfere and as long as he wasn't upset I waited.

For approximately 30 minutes he studied the wet wipe in his hand, studied the box, moved over to the toilet, moved back to the sink. Again and again and again. Finally he threw the unused wet wipe into the garbage can and began setting up his electric shaver, at which he was successful. It is the 30 minutes that amazed me.

Appropriate

This day's words from "Abraham" are very appropriate. I would add Alzheimer's as one of the "other creative ways you have found to make your exit into the Non-Physical."

Renew

With  the  dawn  comes  a  new  day.

Overwhelmed Through My Tears

Gregory was quite distraught twice today, "Something is not right." He looked sick but it turned it  he had to go to the bathroom and didn't realize it until I suggested he do so.

Recently he has had trouble navigating his dinner plate when there are too many types of food on it so I have to figure out how to serve dinner differently.

He no longer knows how a book works regarding where one begins, ends and/or how to turn pages when ready so he can no longer read before bedtime. He cannot tell me or even show me even with my help and suggestions in starting his reading and monitoring where he ends. 

I cannot remember when the last time we had a conversation or when he was able to tell me what he needed to tell me short of, "I ....." without my having to guess or give up guessing.

Sometimes I do not know how I can go on like this. I will but I am grieving the current losses. I'll regroup, figure out how to cope, and move on.

Let me say that even with all of our friends, family and the love that surrounds us ... I feel so lonely. So overwhelmed. So frightened. So lonely.

Sorry to unload.

Two poems from a book our friend Roger gave me called "Poems That come to Mind:for those who love someone with dementia" in the haiku or tanka sytle, by Linda E. Austin. 

I reach my hand

into the day

searching its pockets

for a penny

to buy a new beginning

• • •

in the deep, dark well

when the light at the top fades

it is only you

and the god you believe in

and sometimes that's not enough

The following is an e-mail to Gregory's new companion. We are excited about his joining us and are hopeful that it will work well. In the beginning, the key to success is lots of communication between me (the employer) and the companion about what to expect as well as how things go when with Gregory (the client.)

A

Enjoyed dinner with you last night. 

In the beginning you and I will be communicating a lot about how to work with Gregory. As I mentioned it is important not to talk or whisper behind his back. I mentioned that in the beginning after each time you are with Gregory, I'll walk you to the elevator "to get the mail" and we can check in about how the day went. You should feel free to ask questions and I will fee free to inform and comment. Also feel free to e-mail me afterwards. 

You can text me when with Gregory and if I do not respond within a reasonable amount of time please follow up with a call. Sometimes I do not hear the text "ding." 

Not knowing how to handle a situation isn't as important as discussing how it might have gone. 

Primary is Gregory's safety followed closely at hand by his happiness/contentedness and all done with respect. I know you understand that but want to mention it again.

Things you can do include:

going for a walk in the neighborhood, on campus, to the lake. You need to keep an eye on how he is holding up, especially in hot weather, as he is not able to monitor that for himself. There are small metal water containers in the refrigeragtor with a belt hook. Please make sure he takes one when you go for a walk (and also that he doesn't put it down accidentally on a bench and leave it behind. Those buggers are expensive.

browsing Barnes and Nobel.

5:00 coffee and cookies are a must. (I'll show you how to use the coffee machine.)

going to Starbucks for his 5:00 coffee.

swimming downstair as LA fitness. (I'll walk you through this.)

working together on a LEGO building or on a jig saw puzzle.

looking through books/magazines (by himself or sharing them with you.)

listening to music. (I'll teach you i-tunes)

sitting on the balcony or going down to the roof top garden.

whatever he wants to do by himself. 

take a nap (you can also!)

watch TV or a DVD

any other ideas you may have (be spontaneous or check with me.)

NOT OUT OF THE NEIGHBORHOOD

You do not have to occupy his every moment and should feel free to work on your own stuff now and then. I'll give you the wifi password so you can get online. Just quiet time together can be wonderful.

Ask now and then "Do you have to use the bathroom?" especially when you are about to go out for a walk.

When you look through books or discuss buildings you probably know by now that he is not too good with language. The ideas and knowledge are all there in his head but he cannot get the words and/or associations out for proper communication. 

One idea is that you can comment on what you see and he can confirm. Be careful asking too many questions because he cannot process or communicate and that may lead to frustration. I find that our best days are ones that are somewhat zen, just being one with our environment and place. I'll comment and tell my stories AS WELL AS his.

I'll let you know when we are ready for a cooking adventure with you and G shopping and preparing dinner. First I'll "walk you around" the kitchen and show you where things are.

Not sure if you'll encounter this but if he becomes concerned about something you might say something like, "We'll talk to Michael about this later." or "I'll check with Michael." or "I am sure it will all work out." I have found that white lies, distraction, and redirection also help.

I am sure there will be more later 😄

m

An Important Lesson Revisited

I have learned this lesson before and forgotten it before. This piece in Tricycle: The Buddhist Review Fall 2013 Page 14 reminded me that emotions are the thermometer of how you are feeling. They are a measure of one moment in time. They can help enlighten you and show you what you like about yourself and your life and what you want to try to change. Emotions can also be just a picture of what is or a reminder of what to be grateful for. I used to think that emotions were a sign of weakness or something that had to be "dealt with" or buried or ignored. So now I "go with" my emotions and say, "Bless you," and ask, "What do you want me to know? What do you want me to understand?"

Get Intimate with Your Emotions

By: Robert Augustus Masters

If you want more joy, get as intimate as possible with all of your emotions, illuminating and honoring the basic energy of each one. There is a kind of joy that sooner or later emerges from such exploration, the joy of simply being present at the heart of whatever we are feeling. Such joy weeps as easily as it celebrates; its loss of face only deepens its presence.

A New Day

How do you continue each day when you walk into the bathroom to find your love sitting on the toilet, seeing if he has to go to the bathroom before you go shopping, with his shorts and underpants still up around his waist? How do you continue each day when he doesn't even realize what is wrong and isn't able to respond to your, "Honey, you might want to lower your pants."

According to our niece, you are not supposed to yell at him. She is definitely right. But how do I continue each day? I am kind, I am supportive, and sometimes I yell.

Next major hurdle. Gregory has lost the process involved in reading at bedtime. I've wondered about the comprehension possibilities but now he doesn't know how a book works. He started just closing the book without placing his book mark when he was finished reading  and couldn't show me where he left off. I started prompting him each night before we started reading and he said he understood. Not successful.

So I started marking his place with a post it and a pencil notation so I could help monitor. I would try to see where he was, take the book before he could close it and mark the place. Every night before we began I would remind him, "Don't just close the book, show me where you stop." After he stopped he could not respond to showing me where.

Most recently, he has been on the same few pages for about a week. Out of the corner of my eye, while I was reading, I saw he had progressed two pages and then turned to the next page, turned back, turned ahead again, then turned back. I do not think he knew what to do next or understand the flow of a book. Last night he read about two paragraphs to my ten pages. He announced he was finished but couldn't point to where he left off. I cried myself to sleep.

Right this minute, after a second, this time successful attempt to go to the bathroom with his pants correctly around his ankles, he struggled for quite a while to fasten his belt. Finally accomplishing that I said in a complimentary tone, "I see you got your belt on OK."

He pointed to his Medic Alert bracelet, "This?"

Just Reporting In

Today will probably be a 

Cry For More Than Fifteen Minutes
Day

Memory Care Facilities

So it turns out that my instincts were correct in what to look for when I visited Alden Gardens and Sun Rise. This came across my e-mail today:

Tips to Choosing a Strong Memory Care Community (From https://www.emeritus.com)

Memory care for residents with Alzheimer’s or dementia conditions is usually provided in a dedicated community, or a special care section in an assisted-living or skilled-nursing community.

Because of the nature of Alzheimer’s disease and dementia, it is crucial to find a community where the staff is highly skilled and experienced in caring for this fragile population and significant safety precautions are in place.

Once you know the particular special care needs of your loved one, here are some of the things you need to look for when visiting a care community:

The Environment

• Do the residents have adequate privacy for bathing, toileting and hygiene?
• What safety measures are in place for residents with Alzheimer's and dementia?
• Are there door and window locks, motion detectors, monitoring systems, adequate lighting and no-slip flooring?
• Is there an outdoor patio or walking area that is easily accessible to residents yet enclosed to prevent wandering away from the community?

The Staff and Care Team

• How much time does the staff take to gather information about a resident in order to provide the best care for them?
• How does the staff handle challenging resident behavior?
• Do the caregivers have specialized training in effectively communicating with and caring for residents who suffer from Alzheimer’s or dementia?
• Do the caregivers interact with residents in a comforting and professional manner, maintaining their dignity and respect?
• How do the caregivers deal with the progression of the disease?

The Residents

• Are residents actively engaged in activities that are appropriate and interesting to them?
• How is their hygiene? Do they have brushed hair, are clean-shaven, are wearing matching, clean clothing, and free of incontinence odors?
• Do the residents appear to have a level of dementia that is consistent with your loved one’s current needs and behaviors? In many cases, communities specialize in a certain care level that may not be appropriate for your loved one.

For individuals living in a special Alzheimer’s or Dementia care unit in an assisted-living community, there may come a time when they need more advanced medical care, which would be skilled nursing care.

The Rainbow Connection

Why are there so many

Songs about rainbows
And what's on the other side
Rainbow's are visions
They're only illusions
And rainbows have nothing to hide
So we've been told and some chose to believe it
But I know they're wrong wait and see

Someday we'll find it
The Rainbow Connection
The lovers, the dreamers and me

Who said that every wish
Would be heard and answered
When wished on the morning star
Somebody thought of that
And someone believed it
And look what it's done so far
What's so amazing
That keeps us star gazing
What do we think we might see

Someday we'll find it
That Rainbow Connection
The lovers the dreamers and me

Have you been half asleep
And have you heard voices
I've heard them calling my name
Are these the sweet sounds that called
The young sailors
I think they're one and the same
I've heard it too many times to ignore it
There's something that I'm supposed to be

Someday we'll find it
The Rainbow Connection
The lovers, the dreamers and me

la dada de dada dum
la da de dada do

Read more at http://www.songlyrics.com/kermit-the-frog/the-rainbow-connection-lyrics/#HVjjhDBqXdWJOvgR.99 

Parenthesis

parenthesis |pəˈrenTHəsis|noun ( pl. parentheses |-ˌsēz| ) a word, clause, or sentence inserted as an explanation or afterthought into a passage that is grammatically complete without it, in writing usually marked off by curved brackets, dashes, or commas. 

Gregory has become a parenthesis.

Several years ago, when Aaron (a doctoral candidate to whom we were introduced by our massage therapist Sarah, and whose research we became part of) got to know us, he commented that he was impressed that we still functioned as a "couple." That we were in a relationship that still functioned even though Gregory's Alzheimer's was slowly changing the face of that relationship. 

More accurately, I guess that I would say we functioned with RESPECT for each other. Even though I was "in charge," handled all of our finances, made all of our decisions, took care of all the details, etc; I tried to make sure that Gregory was part of and informed of all the things I was doing. Gregory in turn deferred to me and accepted, with faith in me, my new role.

Slowly, however, he needs to be less part of the decision making process. For example in the beginning he would decide what to order from the menu when we ate out. When he couldn't decide what to order, I began to offer suggestions off the menu. Eventually I narrowed it down to: "Do you want beef or chicken?" Now I just order for him. He is always pleased with my selections and often will reply with, "Oh goodie. This looks really good."

At this point in our relationship, I make all of the decisions in our life. I let Gregory know about activities the day before and again on the day of, but usually do not go into much detail or give too much advance notice because he only forgets or gets agitated about not being able to remember what I told him. This leads to a usually failed guessing game on my part.

I often do not ask his advice because even if he has some, he is unable to communicate it. Now-a-days it sounds more like this. Instead of "What color do you think we should paint the hall?" it is "I was thinking of paining the hall the same shade of white." He will agree. Instead of "When do you want to go visit your family?" it comes out "I think we will go to Michigan to visit your family soon." He will agree. Instead of "Do you want to go to the movies?" it is "We are going to see Batman." 

I still work hard at treating Gregory with respect but the face of it has changed. Here is something I just recently noticed. In the past, I would sign a letter, or birthday card, or e-mail: Love, Gregory and Michael. Based on social convention, the person doing the writing always puts their name last.

Then I began to sign them: Michael and Gregory. Now I have begun to sign some of them: Michael (and Gregory.) I guess I have moved to this format to show that it is a communication from me, not necessary discussed with or part of a decision with Gregory. If I know that Gregory would also send love or a greeting if he could, I leave out the parenthesis: Michael and Gregory.

Interesting. It seems that Gregory has become a parenthesis, inserted as an explanation or afterthought into a passage that is grammatically complete without it. A somewhat fitting description of what our relationship has become.

The Journey Downward

From: Pema Chödrön at Shambhala
http://www.shambhala.com/contact-us

• Spiritual awakening is frequently described as a journey to the top of a mountain. In the process of discovering bodhichitta [the awakened heart], the journey goes down, not up. It’s as if the mountain pointed toward the center of the earth instead of reaching into the sky. Instead of transcending the suffering of all creatures, we move toward the turbulence and doubt. We explore the reality and unpredictability of insecurity and pain, and we try not to push it away. If it takes years, if it takes lifetimes, we let it be as it is. At our own pace, without speed or aggression, we move down and down and down. With us move millions of others, our companions in awakening from fear. At the bottom we discover water, the healing water of bodhichitta. Right down there in the thick of things, we discover the love that will not die. 

Looking for Home II

This weekend, while in Battle Creek Michigan visiting Gregory's family, niece Colleen and I checked out two more Memory Care Facilities. Same experiences more or less: Clean. Friendly. Safe. Expensive. Average age 80+. Reinforces the need to keep Gregory healthy and happy and at home for as long as possible.

Received this e-mail from Michelle who took us on a tour of "The Reflections."

Michael,

Thank you for your email. I scoped out your collection of tiny treasures and your blog. I could not stop reading it. It is very honest, raw, and full of emotion. You are doing a great job. Would you mind if I passed your blog link onto my co-workers? Please let me know if there is anything else I can help with.

 

Blessings,

Michelle Huffman

Retro Normalcy

Besides keeping Gregory safe and happy, I feel my most important role as life partner and caregiver partner is to maintain, for both Gregory and myself, as much of a sense of normalcy as possible. That means daily routines, life skills, meals, entertainment, interactions, social relationships, sense of home, etc.

But I have come to realize that the "normalcy factor" shifts as quickly and as erratically as Gregory's Alzheimer's shifts. What was normal last week, yesterday, earlier today is not necessarily normal this week, today, now.

This realization adds a new understanding of my role and while it doesn't make it any easier, it does create a validity to the roller coaster of my emotions, difficulties of day to day interactions, and sometimes impossibility of providing for Gregory.

P.S. I have recently become Gregory's Bowel Movement Coach. I'll let you decide what that involves but lets just say that I hope it is only the very, very beginning of Gregory's incontinence. Coaching is much easier than changing the whole ball game of bath rooming.

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?

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.

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.

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?

Knock/Knock."

"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:

"Knock/Knock."

"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.

Faith

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.