Monday, January 21, 2019

Advice to an Alzheimer's Caregiver Partner Newbie

I am often asked, "What would you tell someone who just found out that their spouse or parent or friend was diagnosed with Dementia/Alzheimer's?"

My thoughts to myself, as I gather my about to be given "advice," is that there is a world of difference between a person's spouse and a person's parent. The relationships are different. The intimacies are different. The experiences shared are different. The way in which care will be delivered, both the caregiver's and the caregivee's needs are and will continue to be different.

With your parent, the relationship began when you were first born. It may have been an easy relationship or a difficult one. You had no choice as to who that parent would be and short of acting out and/or running away from home, you had no control over that relationship. Usually, the parent leads and the child follows. The parent has the power and the child has none.

It is said that the most important part of the parent/child experience is the child's slowly working to leave the parent and become independent. If you can do this successfully, the parent and child relationship can begin to move more towards one of friendship and mutual respect.

With your spouse, you elected to begin the relationship. There were the things you had in common, interests and experiences shared, and hopefully, the growth over time was two-sided. The passion and lust grew into love. The partnership was forged in a way that was negotiated, supported both your needs, your partner's needs, and the needs of your children if you chose to have them.

If you are lucky enough to have a successful union; you learn to live with the give and take, the shared responsibilities, the negotiations, and by taking the good with the difficult to provide a meaningful day-to-day way of spending your life.

I have discussed the two most important types of relationships one can have with another. But also one must look at friend and other family relationships as well. I'll not talk about this here but you can think through that on your own.

When Dementia / Alzheimer's come into the relationship with your parent, the responsibilities of "who is in charge" changes. With your spouse, the partnership slowly dissolves into a one-sided managed situation.

I have thought carefully about the differences if only because the day to day "advice" I would give for dealing with the situation, most likely would be defined or suggested by your relationship to the person who has received the diagnosis. I will not go into the types of thinking necessary for any of the different relationships but tailor my comments to anyone dealing with being part of the caregiving team created to support the diagnosis of Dementia/Alzheimer's.

But one more digression first. Most advice that I could give will seem trite. The person receiving the advice will most likely feel that I do not really understand their situation. For the information I might share to become real, the person must learn it, feel it, accept it themselves. One cannot tell another what to think let alone how to feel or what to do. One can only advise.

Hopefully, hearing some of this advice (and much of it is what I read about or have been told by others over time) will "light up" again once you have had time to process it, experience it, understand it, really need it. If you decide to own it as your own, then it will feel less banal and more applicable to you.

RESPECT the person. No matter what changes they go through. Find a way to help them continue to keep their "personhood" even as their abilities fail.

Be aware of the RIGHTS of the person diagnosed. As possible always respect their rights to be who they are, to make decisions for themselves or at least to participate in making those decisions, to live their lives in the ways they choose. Also be aware that sometimes and/or eventually, their rights must be disregarded but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.

BE PATIENT with the person. Their processing and understanding of the day to day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made and eventually no longer exist.

CONTROL ANGER, as best as you can. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned, and once again becoming more of a child. But what complicates the matter, is that they are becoming a child again but in an adult's body with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them. How you would treat a very young child as they grow with wonder at the world around them is similar to how you must treat the person who is slowly losing this wonder.

REALIZE IT IS THE DISEASE, not the person who you are continuing to love and trying help. If they get angry with you, it is the illness. If they strike out, it is the illness. If they need you to repeat something for the hundredth time, it is the illness, not the person!

BE FLEXIBLE. As the diagnosed person's needs change, so must their environment change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.

Be SELFISH. Most people will be taken back by this term but I maintain that if you do not take care of your SELF, you will not have the energy or health to give to another. Find ways to relax, to refresh yourself, to get away for a short period of time, to make sure you visit your own doctor as needed, to enjoy yourself as you can.

ASK FOR HELP. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone else had a life and most are oversubscribed. But there are ways that others can help to lighten your day-to-day.

YOU CAN DO THIS, what choice do you have, really. Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room ... you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself even though you are devastated will help.

YOU ARE NOT ALONE. So many others, in the U.S. over five and a half million are living with Dementia / Alzheimer's. Sixteen million people are in addition to their own self, providing care.

WAXING PHILOSOPHICAL: It will "GET BETTER" ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected to die. For others, it will be anticipated, slow,  and/or very painful to die.

Usually, the parent wins the race to death. With a spouse, one or the other will win the race. Interestingly, the person diagnosed with Dementia does not always win the race! For everyone, we will grieve the loss of someone we love. Talking about death helps, in the long run, to ease the mystery of death. Conversations with the person dying and being there for and with them helps.

The biggest mystery of life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. Hopefully, its mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others.

YOU CAN DO THIS!

Full Red Wolf Moon Eclipse and Ragdale

Great photos by my friend Jerome Boom. I knew I could rely on him to watch the eclipse for me. 








Turns out I was “serving time” for my residency at Ragdale Artists' Community located on the former country estate of architect Howard Van Doren Shaw in Lake Forest many years ago (2010) when the Full Red Wolf Moon occurred. 


I wrote a poem about it:


The Museum of Michael’s Mind
Poetry: Wolf Moon

As I lie in bed tossing and turning
The ideas of the day, 
The moon floods my pillow,
And sleep evades me.  

Largest of the year and full,
The cheese man smiles,
On his bronco, the cowboy bucks,
A young girl’s hair flows.

In my Ragdale bedroom,
A round window hole is punched through the wall.
Barnhouse red on the outside,
Playhouse blue inside.

The double circle of glass inserted
Is slightly cracked, although not broken,
And even with its center gently misted,
The window to my world is not clouded.

The walls and floors pulse with the creativity,
Of the artists who have worked here before,
And the Spirits and Family of the Past
Take delight in what we now do.

I process the day and its events unfolded,
Set goals and desires for tomorrow.
I wonder at the wonder of being here,
And turn over to avoid Moon Burn.


Ragdale Barn Play House Bedroom Window by day

The Barn at Ragdale








A Video About Truth

In her BLOG, my friend Kate says, "The short Vimeo I am posting below today was made by a friend and colleague in Scotland, which I found to be incredibly profound. For me, it spoke mostly about truth. But it also speaks about lies and deception, and arrogance and the lack of scrutiny. As I have become what others often tell me – a rebel, disruptor, or a whistleblower, or simply someone willing to lose ‘friends’ by talking about topics many others are too afraid to speak up about, this short movie really spoke to my heart."



I have copied the e-mail and BLOG dialogues below to show the process of my thinking and how greatly moved I was by the video as well as Kate's and Peter's (video's creator's) responses.

• • •

This was what I shared with Kate via e-mail: 

The video was hard for me to follow but periodically a message delivered rang true. I came away from it, however, feeling hopeless to do anything at all for those I love(d) with Dementia. “Good will can cause as much damage as ill will if it is not enlightened.” But isn’t that true for all things in life? I did the best I could for Gregory but it was not always the best and I was not always at my best. Is it possible that DOING NOTHING would have been better? I am so sad with tears holding open my eyelids.


• • •

Kate responded


I’m so sorry dear Michael… this is witness to how differently we all interpret things. Try not to cry. You did YOUR BEST for your beloved Gregory. In reality, we are ALL DOING OUR BEST, each and every day. Yes, even if it’s not good enough for others. Love you forever my dear friend 
• • •
Next, I sent this to Kate: 
Watched the video again. It feels so heavy with Truth and so dark with Life. I believe that most of the Truth was not uplifting but for one quote, “If organic theory overlooks human freedom, organic practice must suppress it!"


• • •

Kate's Response:

Wow! What a different response! We are such interesting and complex beings. Perhaps because I am quite a close friend of Peter, I understand or receive it differently?

He was a psychiatrist for 25 years and retired last year being too disturbed by his industry (and his Scottish government) and the way they ‘treat’ people with mental illness and dementia.

You’d actually love meeting him; he’s also a poet like us, and such a sweet gentle soul.


• • •

My response:

Thank you Dear Kate. I wish I could make it better for you, for me, for all of us who suffer. And it is not Dementia from which we suffer, it is Life!
Always, Michael


• • •

Peter, the video's creator, responded thusly: 

Dear Mr. Horvich, I am so sorry that this film left you tearful. I have no doubt that you, alongside the medical community did the best for Gregory. I see goodwill and kindness everywhere. This film was about wider, general principles sharing philosophical and artistic thoughts. 

Thank you, Kate, for writing about my film with such beautiful thoughts. You are a wonderful person Kate. My main reason for making this film is my worry that ethics may not always be at the beating heart of science.

aye Peter x, Scotland.

• • •

My comments which followed:

Thanks, Kate and Peter for the continued conversation. The video continues to “haunt” me as I continue trying to understand why it has affected me so deeply.

My further thoughts are that it so accurately portrays the state not only of the medical and psychology professions but also the belief/thought processing of all sentient beings.


For me, it shows reality in a real way, not an imagined one. It shows the difficult work we have, those who “see,” ahead of us to change the paradigms that control so much of our thinking and therefore our lives and our reactions to it.


I believe now that it saddened me in that it uncovered how much I too have been “convinced” inaccurately (inappropriately?) in my thinking. It frightens me in how vulnerable I am feeling right now about how to make changes in my thinking and actions (let alone, as you say, influencing the wider, general principles in medical, philosophical and artistic thoughts.


Finally, Peter, the way in which your video presented the issues and cut into my thinking was as amazingly sharp as a scalpel to the mind.

Saturday, January 19, 2019

Gregory & Michael


I created this two-minute slideshow, to help people get to know Gregory and me, in preparation for a February presentation to "Chicago Prime Timers" and as keynote speaker in March for the Minnesota / North Dakota Alzheimer's Association Conference in conjunction with the Mayo Clinic.



Thursday, January 10, 2019

Happy Anniversary Gregory and Michael, January 10, 1976, 43 years

JANUARY 10, 1976 was the day Gregory and I saw each other across a crowded room and fell in lust. We count that date as our "anniversary" and that was 43 years ago! One year later we consummated our relationship at a time when everyone (Gay or Straight) was hopping into bed for a one-night stand after meeting at the bar! Two years later, after a beautiful courtship during a time when everyone was desperate to declare a union after two or three weeks knowing each other, we moved in together.
We consider it the anniversary of our meeting and our commitment to each other as a couple, during a time when such relationships were not recognized by our government, by our churches, let alone by a large percentage of the general population. It was before various state civil unions, before legalized marriage for same-sex couples in the United States, and before legalized marriage in many countries around the world, and before "Love is love!"
We were both attending a meeting of the Monday Night Men's Gathering Awareness Group on that fated night. In those days men were just beginning to explore in earnest their feminine side and looking closely at what makes a man a man, what makes a woman a woman, how can the two work together in life in a respectful, loving way. Our group of a dozen or so men included straight, gay, bisexual, white, black, Hispanic, Asian, married, and single!
It was the time of a resurgence in the Equal Rights Amendment Era of the '60s and '70s. The ERA was a constitutional amendment which was originally introduced to Congress is 1921 in an attempt to end the legal distinctions between men and women in terms of divorce, property, employment, and other matters.
It was ratified by the House of Representatives and the Senate in the 1970s and sent to the states to be ratified as an Amendment to the Constitution with a deadline for voting to be 1979 and then extended to 1982. Through 1977, the amendment received 35 of the necessary 38 state ratifications. The deadline since has been extended and passed. Several states have revoked their vote to accept and a few have voted YES with some activity showing up during 2017-2019.
This is a battle we easily see continuing to take place not only in our government but on the streets with the marches of our discontent with the treatment of women! A battle of 98 years over an argument that should be taken for granted as the way to go and the right thing to do.
We also see semblances of this battle in racial tensions, immigration, continued LGBTQ issues and more. The LGBTQ Community has gotten to work for "Love is Love" and we now all need work towards "People are People."

Tuesday, January 8, 2019

I Lash Out, I Rage

Do you know about "Work Oppressive Dreams?" I continue to have them some twenty years after having retired from teaching. They are of the type where I show up at school having left the exams at home, or not being prepared for the day's lessons, or forgetting to have put on my pants.

This dream had to do with Gregory. I dream about him a lot. In the beginning, he was in his diminished state and he was just present in the dream. Slowly he regained his abilities, cognitive and physical, and his presence and interaction in the dreams were closer to "the old Gregory." 

In last night's dream, I pulled up in front of the condo and we were unloading the car. In the dream, Gregory had reverted to his previous lower functioning level. I got the cart from the lobby to unload the car and when I returned he was nowhere to be seen. I panicked. 

Turns out he had gone ahead up to the condo, without my seeing and without mentioning anything to me. When I got to the condo and discovered he was there I blew. My heart was beating a mile a minute (in the dream as well I am sure.)

I proceeded (I will admit this) to yell at him and to "beat him up." Slapping, hitting, shoving ... but not so hard that I would hurt him but rather hurt his ego. Perhaps I wanted him to know that what he did was not a good idea and perhaps my anger would help him know not to do that again. (Poor rationale!) 

It felt very much like watching a parent spank a child who ran into the street and was narrowly hit by a car. The kid almost dies so the parent hits him and punishes him?

I woke up heavy with the dream on my mind. I cried and felt so badly that three years and three months after Gregory's death, I still had so much anger and rage in me and that I acted in a mean, punishing, embarrassing, inappropriate, and uncalled for way.

Fairly quickly, I was able to dismiss the guilt. I understood that sometimes hidden emotions surface before they can be on their way. But I was heavy with the experience and often that is when my best poetryt "composes itself" for me. So at 4:30 AM, I got up and went to my computer to compose this poem:


Normalcy Violated

I work so hard to keep our life as normal as possible.

Then something happens to show me it is not normal.

To remind me that it is not normal. That Dementia rules.

And I react. I freak out. I act in ways for which I know better.


I love you so. And I mistreat you because I love you so.

And I lash out. I rage. I rage and lash out verbally. Physically. 

I hit you, slap you, punish you. Abusivey without thinking.

Because I want our life to be normal, And I am shown it is not.


I want you to be safe, I want our life to be normal.

I do not want you to be frightened or confused or frustrated.

So I lash out. I hit you. I slap you. I punish you.

And then I apologize. And I cry. And you cry. And I love you.


When normalcy disappears I freak out. I am surprised. I lash out.

And as much as I love you, it is not enough to just love you. 

It should be enough, but it is not enough and I lash out and I freak out 

And I apologize. And I am so sorry. And I cry. And you cry. And we love each other. 


That should be enough but sometimes it is not enough and I lash out.

When will I learn? Maybe next time. Maybe next time?

Sunday, January 6, 2019

Clutter

These first photos are not of my home but to me, they speak of "CLUTTER." Next are some collections which are in my home and which some might consider cluttered. Then an article follows which is about how clutter can cause emotional and stress problems. Finally, my retort is below the article.





 

(Cezanne's studio)

These are collections in my condo.













 

(opens in a new window)
https://www.nytimes.com/2019/01/03/well/mind/clutter-stress-procrastination-psychology.html?fbclid=IwAR1rLi6sI0LbDoRqXcN25uDNIDv4INJWO2F0AD6P6TLm9YeOwVCRLzzWl_4

How about "Organized Clutter?" I find mine comforting. My collections flourish in every room of the condo including bathrooms and closets. I still collect, although more thoughtfully as I get older.

Besides organized clutter around the house, there are one or two places that do get out of hand (both behind closed closet doors,) and which I eventually de-clutter, and then begin the process again. Also, if you follow this blog, you know that the area in front of my computer collects collections on its own, without help from me and often attributed to the "Computer Elves."

Marie Kondo says if something no longer brings you joy, get rid of it! The problem for me is that so many little things, with no place to display or "have out," so stored in plastic shoe boxes on the shelf in a closet, still do bring me joy.

I think that if someone were to give all those stored collections away, I might not notice. I am aware that while they exist, they take up memory storage in my brain which could be put to better use! But honestly, it is easier to just not think about them. Every now and then I take a box of stuff down from the closet shelf with which to "play" and periodically resurrect an item or two to keep out for display. 

I do not believe that I am attached to the "things" in an unhealthy way, often give them away when admired, and deaccession some collections every now and then. I have approached Chicago Children's Museum with a proposal to add more collections to Michael's Museum: A Curious Collection of Tiny Treasures, which has been a permanent exhibit there on Navy Pier since 2011. The proposal was accepted, budgeted by them for FY 2019, and work will soon begin on the details.

Meanwhile, I still enjoy my collections ... so I'm keepin' them ... for now!

Friday, January 4, 2019

Problems into Possibilities

Turning Problems into Possibilities

The moment you notice it, take hold of that mental affliction with your attention and purposefully turn it into an aspiration. It’s as though you see the mental affliction as raw material, the way a potter would view clay. You don’t see clay as a problem; you see it as an opportunity to create something.

—Lama Kathy Wesley, “Your Mistakes Are Progress

I would add "physical" affliction to "mental" affliction as raw material. To address both mental and physical, I have been actively making changes in my life. It feels good to actually be doing something about something I have been unhappy about! I am not taking the clay of my life and fashioning it into the opportunity to create a new sculpture of my life.

This approach to turning problems into possibilities also means turning around your thinking. If you wake up with a painful hip, notice it and turn it into I am working on treating my body in a way that makes my hip feel healthy and whole. It means being thankful for a positive outcome as though it has already manifested, and even better knowing that it has begun!

Previously, I believe, I wrote about some of the pangs of growing older, this post is a review for myself of the changes I have made to live the positive aspects of growing older.

My painful hips, knees, rotator cuffs, neck, lower back, etc. cause me to limit my activity. On waking, my hips and lower back are so painful as to make me feel "crippled." I sit in front of my computer for too long of a time and raise stiff and sometimes in pain. Stairs have become more difficult for me to climb: up and down!

Began with a Pulmonary Doctor who thought I had COPD (Chronic obstructive pulmonary disease, involving constriction of the airways and difficulty or discomfort in breathing) but all my tests came back "normal." Yet I seem more easily out of breath. Carrying groceries in from the car, to the condo, and putting them away has become a more difficult task.

My sleeping habits have become erratic again and I nap for up to an hour almost every day. My weight is stable at "TOO MUCH!" Yet I have not been enjoying my meals. Sweets, pastries, etc have always been a downfall and Christmas Treats were no different.

I will not even go into changes and minor difficulties with bathroom activities!

But enough for the NEGATIVE side of me. There is also a VERY POSITIVE aspect to my life on which I am actively working and maybe it is just in time for the New Year, 2019, although I do not believe in New Year Resolutions. Those usually fail by January 15th!

I decided that I will grow older gracefully in those areas over which I have no control but will take in hand those over which I do. So I have begun to work harder on physical limitations that do not need to be so limiting. It feels good not only to have made this decision but to have been working on it now for over one month!

1) I am now working with a personal trainer. Our sessions have been so helpful to my overall body awareness and I engage in the stretching and movement even on days when she is not here. Yesterday, we decided to have her come to the condo twice a week if only because we are making so much progress. Once we get a routine in place in the condo, she will come with me to LA Fitness (downstairs of the condo) to see what I might do there to continue the good work we do (upstairs in the condo.)

2) My Guru, Corrine, introduced me to the trainer and Corrine will be working with me to develop some Yoga and Buddhist Meditations and Practices to compliment the work of the trainer. 

Here is a "Heartfelt Desires" page I developed on Corrine's recommention:

Heartfelt Desires

PART ONE: December 15, 2018 (Gray Font)

Working with Jessica Dare (Physical Trainer) and Corinne Peterson (Yoga Teacher/Guru,) I am setting down preliminary Heartfelt Desires for my Body Awareness, Movement, and Care Practice.

These desires are made in positive statements, with gratitude and thankfulness for their already being a chosen focus of my daily life, already being part of my experience, and already seeing progress accomplished.

PART TWO: December 21, 2018 (Black Font)

The next part of the process is to take each one and imagine it were already true, right now, in this moment. How would each feel in the body of it were true?

• • • • •

I am comfortable in my body and as a 73 year old, I look and feel good in my clothing.

Feeling better about myself, enjoying shopping for exciting new clothing, am proud of how I look, look forward to “dressing up” in sport coat etc. Confident in my presence with others.

My breathing is full and deep.

Energetic, doing more, getting out on every day activities as well as special ones in nature. Fairing well in all I attempt Not avoiding activities due to fear.

My energy is high and easily available.

My health is strong and free from illness and injury.

Facing each day knowing I am OK. Not working unnecessarily about “old age.” Looking forward to spending each day productively and positively.

My body movement and stretching, walking and exercise add to my all around good health and happiness.

Exercising regularly and daily. Looking forward to the day’s movement activities. Knowing that what I do adds to my overall health and therefore the ability to do what I want and to enjoy myself and my life. Doing things now that I have not been able to do in the recent past.

My eating habits are thoughtful and I am aware of how my choices affect my Heartfelt Desires.

Feeling good about what I eat and the decisions I make. Not feeling guilty about the decisions I make and or over the ones I know I should make but do not. Feeling comfortable not bloated or stomach sick.

I allow my eating choices to be at the “comfort food” level now and then, but keep these choices as the exception and not the rule.

Giving myself permission to eat for pleasure, but now and then, not all the time. Feeling the power of being able to make good eating decisions for myself. Feeling powerful in being part of the “solution” for myself, not the problem.

My strength, cardio, and flexibility health continue to improve as I continue to pay attention to these Heartfelt Desires.

Besides living well day to day, I am making my future potential life better. I am giving my body the chance to take care of me and allowing me to live longer and better. I am more active day to day as well as over time. I am able to do things I have not been able to do. I look forward to travel: in the U.S., in Europe, and in more challenging places like Asia.

• • • • •

I get a massage every other week, again very beneficial to my overall good health feeling and am thinking of increasing it to every week. Sarah, my massage therapist of 5+ years uses Thai Massage rather than table massage.

Traditional Thai massage uses no oils or lotions. The recipient remains clothed during treatment. There is constant body contact between the giver and receiver, but rather than rubbing on muscles, the body is compressed, pulled, stretched and rocked.

The recipient wears loose, comfortable clothing and lies on a mat or firm mattress on the floor. The receiver will be positioned in a variety of yoga-like positions during the course of the massage, that is also combined with deep static and rhythmic pressures.

The massage generally follows designated lines in the body. The legs and feet of the giver can be used to position the body or limbs of the recipient. In other positions, hands fix the body, while the feet do the massaging. There is a standard procedure and rhythm to the massage, which the giver will adjust to fit the receiver.

3) I joined Weight Watchers and have begun to be more careful in what I choose to eat.

4) I will begin a series of acupuncture sessions, with Marc, to work on my lower back and hip problems. A number of years ago, Marc helped me work through some fairly severe Rotator Cuff problems.

5) I have been meditating every day, sometimes for a short period of time and sometimes for longer periods of time. I use my own techniques (learned from Corrine) and also use the online "headspace.com."

6) I also have been reading and continuing my studies in Buddhism. Next step will be to find someone or someplace where I can participate in discussions of what I read about and about newly learned ideas.

• • • • •

So all in all, I feel pretty good about who I am today and where I am going tomorrow. I didn't even talk about my continuing writing, working on my memoirs, continuing the push to create ALZHEIMER'S: The Musical, and making presentations to various groups on living well with Alzheimer's Dementia. I also didn't talk about how much I continue to love my condo, my kitties, my friends, and my family.

So all in all, it looks like the beginning of a beautiful 2 0 1 9 !
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