Advice to a Dementia/Alzheimer's Carevier Newbie

My latest freelance article featured in Teepa Snow's

"Positive Approach to Care" free online journal.

Advice to a Dementia/Alzheimer’s Caregiver Newbie
by Michael A. Horvich: Author, Educator, Care Partner

I am often asked, "What would you tell someone who just found out that their spouse or parent or sibling or friend was diagnosed with Dementia/Alzheimer's?" This is what I learned over the forty-one years my life partner Gregory and I were together in a committed relationship and over the twelve years that I walked the Dementia/Alzheimer’s Path with him.

I will not go into the different kinds of thinking necessary for different kinds of advice to give in different kinds of relationships, but rather tailor my comments to anyone being part of the caregiving team. I will also say, that just as there is not one way in which Dementia expresses itself, there is not one way in which to offer care!

Be gentle with yourself. Forgive yourself. To be a successful caregiver partner, you must know that you will not always be successful. First, you are the one who can, must, and will change and adapt; they cannot. Sometimes you will fall short of being your best possible self! Every morning (or as often as you need to) in front of a mirror, repeat toyourself, “I am not perfect but at least I try!” Or the often-touted mantra, “Each day ineach way, I am getting better and better!” If you don’t want to face the mirror, write itdown in a place you can see it at the start of each day.

Try, try again. Next, you are the one who must be “above it all,” knowing it is all aboutthe disease and the person you love; but sometimes you will let frustration, anger, fear, exhaustion, etc. get the best of you. Remind yourself that you are only human.

Know that each day will be a new one. Each day you will get a new chance to “make it right.” Try not to feel guilty or carry yesterday’s difficulties into today. Chances are your loved one will more easily be able to be forgiving and to start each day anew. Take advantage of beginning fresh each day.

Interpreting behavior can be difficult. Know that sometimes you will not know how to interpret the behavior you are witnessing let alone how to deal with it or support the person you love. Try to put yourself in their place and think about how you would feel. Ask them for clarification or at least let them know you care and wish you could help.

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. Help them to find alternative abilities to replace those slowly leaving.

Respect the decisions of the person diagnosed. As much as possible, respect their right 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.

Be aware that decisions are not always able to be made by the person living with Dementia/Alzheimer’s. Sometimes and/or eventually, these decisions must be made on their behalf but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.

Validate and Seek. If your spouse expresses worries about financial matters, repeat theirwords to validate their concerns, and then tell them what your plan is. “Oh, so you’re worried about finances? I am pretty sure we are okay, but I’ll check in with ouraccountant to make sure.” If your mom is upset, but she is unable to use language toexplain what is upsetting her, validate her frustration. “Mom, I can see that this is hard for you, and I’m sorry.” This can also be where you need to put on your detective hat and get curious about what is upsetting her. Using visual cues and “Is it this or something else” questions, you may be able to figure out what her unmet need is.

Try to maintain a team approach. In your relationship with the PLWA, make sure to include them in most decisions which affect them. If their ability to participate in the decision-making process is diminished or does not exist, offer the alternatives in bite size pieces which continue to respect that they are or once were part of the team! If you are purchasing a new item, show them two similar items and ask which they prefer.Load the questions a little by offering, “I really like this one best, what do you think?”

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. Abilities may come and go, may return in reduced form, and eventually no longer exist. When asking a question, give the person a chance to process what you said. Asking another question or clarifying too quickly only serves to create more confusion.

Control your anger, as best as you can. Sometimes your frustration can cause anger.Sometimes the PLWA’s behavior can cause anger. Conversations gone awry can cause anger, especially when you have been used to successful conversations for such a long time. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned. Count to ten, leave the room (don’t just walk out, say “I’ll be right back.,”and breathing deeply all can help.

Remember, they are NOT children. What complicates the matter is that mentally, it appears they are becoming a child again, but the fact is, they are NOT children. They are adults, 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.

Accept repetition in conversations just as you would gently do for a very young child as he grows with wonder at the world around him, often with his asking the same question repeatedly with a string of Why? Why? Why’s? How you deal with your loved one should be similarly loving but with respect for the adult which they are even though they may slowly be losing their abilities and possibly their ability to wonder.

Realize it is the disease, not the person who you are continuing to love and trying to 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!

Try to see beyond the behavior. Perhaps the person no longer can express themselves using language, perhaps they are no longer aware of what is troubling them. Maybe they are in pain but do not recognize it, let alone have the ability to let you know about the discomfort. At times thirst and hunger are no longer recognized let alone how to satisfy those basic needs.

Things are not always what they seem. At times a dark, reflective window can be a vast empty frightening place that is home to demons and a dark area rug in front of a door can be a deep hole in which to fall! If the memory fails, a loved one can erroneously become a stranger and a trusted friend can become a dangerous enemy. Close the shades at sunset, remove rugs, arrange furniture so it is not in the way of the route to the bathroom or bedroom.

Put yourself in the person’s place. Work hard at imagining what might be troubling them. Then see what you can do creatively to correct, distract, and/or remove them from the situation.

Create music and art activities. They can provide a person living withDementia/Alzheimer’s with hours of productive fun as well as provide a sense of accomplishment and an opportunity for socialization with loved ones. Use headphones to listen to music from the PLwA’s era or that they used to be able to play. If artistic, but no longer able to practice their art, try to find a replacement. Reintroduce (careful if maybe insulting) coloring, crayons, pencil sketching, finger painting.

Activities must be meaningful and foster success. Try to make the activity one where they can experience success and also one which will be meaningful to them. For example: household chores, help with meal preparation, cleaning up and setting the table, folding laundry, reading, watching TV, playing a DVD or video.

Toys can help entertain. Many toys can provide sophisticated ways of spending time. Others, like dolls or Teddy Bears, can provide something to do with the hands as well as emotional support and harken back to earlier memories. Crossword puzzles and jigsaw puzzles come with various levels of difficulty.

Tailor the environment. As a person’s needs change, so must the environment inwhich they live. Be careful about rugs that may cause a fall or furniture that may not support their weight. Keep sharp and dangerous items out of sight or under lock and key. Make it easier for them to find what they might need and try to keep everything in its place.

Meals can become complicated. When eating at a restaurant, help guide the PLwAthrough the choices depending on their cognitive abilities which can range from “What do you feel like eating today?” to “Do you want chicken or fish?” to “Oh, this chicken dish looks good, shall we try it?” Meals at home, if causing difficulties, can be served one course at a time, be easy to pick up with fingers, be easy to chew and swallow. Sometimes the color of the table, table cloth, and/or dishes can soften dinner time difficulties.

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

Be aware of medical changes. Some of the changes may not be apparent so if you see a change in behavior that is not explained by anything obvious to you, and that seems to last for an inappropriate period of time, maybe it is time for a visit to the doctor for some tests. Infections, digestive problems, or physical injuries are just a few that might be happening but not visible to you.

Be selfish. Most people will be taken back by this term, but I maintain that if you do not take care of yourself, 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, and to enjoy yourself when and 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 has a life of their own and most are oversubscribed. But there are ways that others can help to lighten your day-to-day.

Look to your community for help. If not family or friends, check out the possibility of getting respite help from local high school or university students, from your church, from a neighbor, from your housekeeper, from your city’s Senior Citizen Center, from your local Alzheimer’s Association. Even an hour by yourself can help you keep your sanity.

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! In the United States over five and a half million people are living with Dementia/Alzheimer's and this number is growing. 16 million people are helping to providing unpaid care for them. This includes over 18 billion hours of care at a value of over $232 billion dollars!

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. For others, dying will be anticipated, slow, and/or very painful. Doing our best to help others reach their end as comfortably as possible is the best we can do and to hope in turn that it will be offered to us! It is a blessing to be able to do this for one another.

Usually, a parent wins the race to death. While one might say “they lived a long healthy life” or “they had a blessed wonderful life,” often that does NOT lessen the grief and feelings of loss for the children; even if the parent is “in a better place” or “no longer in pain.” Sometimes these platitudes help, other times they do not!

With a spouse, either you or your partner will “win the race.” Interestingly, the person diagnosed with Dementia does not always win the race! Often the caregiver partner is the first to cross the finish line and to leave this life.

With a sibling or friend, the contest may have either one of you be the winner.

Having conversations about death with the person dying, while they are still able to express themselves, helps them to die with dignity and helps you to serve them in a way that follows their wishes as closely as possible.

Remember, one size does not fit all. Again, there is no one way for these types of conversations to take place. They may take place easily or they may be a very difficult topic to broach, for some or everyone involved. You must determine whether to continue these conversations depending on how your loved one reacts or if they let you know they do not wish to have these discussions! You might drop the subject and try to bring it up again at a later date.

Grief always takes its toll. when someone we love dies. Talking about the death helps, in the long run, to ease the mystery of life and the mystery of death. Telling our stories to each other and listening to the stories of others, gives us a common ground which allows for grief to express itself.

There is no one right way to grieve, no time period in which it should take place, and no right or wrong way to do so. In some ways, one never gets through or gets over grieving, it just becomes a little easier to carry the grief. The problem as well as the joy is that with great love, there is great grief!

The greatest mystery in life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. We hold on to it our entire adult life and it can color how we face living each day. Hopefully, death’s mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others and for ourselves during the time we have available.

You are not alone! You can do this! Believe in yourself! It will not be easy but it can be done well! A diagnosis of Dementia/Alzheimer’s does not have to be a deathsentence but rather can be an invitation, not necessarily an anticipated one, to live life to its fullest!

© 2019 Positive Approach, LLC Online Dementia Journal – June 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!

On the Occassion of Isaac and Jessie's, My God Children's Wedding

LOVE and MARRIAGE

Wishes to Isaac Bloom and Jessie Liang,  Jessie Liang and Isaac Bloom,

On the occasion of their wedding, Friday, October 5, 2018.

By Michael Horvich

From my heart, some thoughts as you are about to agree to marry … 

You will continue to be separate individuals but will be living in a world of togetherness. You must continue to grow as individuals but now you will also have the opportunity to grow as a couple. 

Some growth will be person specific, sometimes one of you a little ahead of the other and sometimes a little behind but never too far from each other. Different friends, different likes and dislikes, different activities, apart time. The growth will take you in separate directions and this is good. 

Some growth will be couple specific, continuing on a parallel track and in the same direction, hand in hand, and this too is good. Friends, likes, dislikes, activities, together time; things that you both enjoy.

For a union to be successful, I strongly believe that both types of growth must take place.

Here is a little more advice which I believe will help you as you both grow on both paths.

“Self” is made up of everything you have ever thought, been told, said, seen. It is made up of everything you have ever witnessed, experienced, & more. Therefore, “Self” does not have an individual identity. Your “Self” is not just your personal beliefs. It is the total of and a reflection of every person and experience you know and have known. This has been true from the day you were born and will go on until the day you die. This began when you were a babe in arms, continued as a child, and a teen, and a young adult. This took place before you even realized that you had the power to accept or reject what people what you saw or what you heard.

To become a fully actualized person, you must now realize and accept that you do have the power to change your “Self.” To do so, one must “triage" their belief system. Mindfully rethink your beliefs as they come up, keep the ones with which you agree. Toss the ones with which you disagree. Rethink those of which you are not sure.

Now that you are agreeing to marry, not only the “Self” but also “Love” is moderated, by those very same things and conditions. Sometimes those moderations are helpful. Sometimes they are not. To have a fully actualized marriage, you must now realize and accept that you have the power to make changes in your beliefs. As a couple, you will need to jointly “triage” your “what is a “Marriage Belief Systems” as well. In this way, they will be more closely in synchronization. 

This is sometimes an easy process and sometimes a painful one. Saying goodbye to old beliefs is always a little difficult. Saying hello to new beliefs always a little frightening. But more frightening and risk-taking is NOT making changes.

In addition, to be successful, Gregory and I learned that COMMUNICATION and RESPECT are the key factors in our relationship. The willingness to not only LISTEN but also to HEAR each other figures in as well. We were able to NEGOTIATE and RENEGOTIATE our relationship, our RESPONSIBILITIES to each other, and our day to day housekeeping DUTIES as we grew and changed and our needs and lives changed. Sometimes Gregory needed to lead and other times it was my job to lead. Sometimes “roles were subject to change on a moment’s notice!” Also, we NEVER went to bed angry and NEVER walked out on each other until an argument/disagreement was settled or at least we mutually agreed to put the argument on hold. 

I believe that you two will have a wonderful (although sometimes it will be rocky) future ahead of you. You have already experienced some of that rockiness so it will not come as a surprise. If anything because of it, you will be able to approach new difficulties with greater strength, greater resolve, and therefore greater LOVE.

Congratulations on choosing change!

Fondly, Michael (and Gregory)

Good Advice

How's this for good advice:

Letter to a Young Gay Man

(Written in 2007)

Joseph,

Hi. Your mom and I met four or five years ago when we were both in "Attila" at the Lyric Opera. I remember meeting you briefly as well. Time flies and according to your mom, you have grown into a fine young man (do I remember 17 years old?) She also shared with me your "coming out" as a gay man.

I probably have been gay all my life, but didn't really understand it until I was in my late teens or early 20's. Times were different for my coming out. Gay was not talked about, people didn't admit it freely, people acted on it secretly and with fear and guilt, double lives were lived, both men and women got married to an opposite sex member (who may or may not have understood the situation,) and had children. 

I taught for 30 years and for most of that time had to remain "in the closet" or face loosing my job. When we went to a gay bar to dance, even though of age, we faced getting raided, so the unspoken word was that if police raided the bar and you were on the dance floor, you would grab the nearest "dyke" and vice versa. Often gays, if too obvious, were beaten up on the street (still happens I guess but maybe not as frequently)

My mom had a terrible time dealing with my being gay. She discovered this about me when she uncovered a "love letter" that was tucked into one of my old college books that was sitting on the shelf at home. She called me at college on the phone and told me to come home soon because she wanted to talk to me. I knew what she wanted but didn't want to face her. I finally did go home and we "had it out." Many tears. If she hadn't discovered the letter, I do not know when I would have had the courage to come out to her.

She talked to the family doctor and he recommended that she take me to a psychiatrist to get me "cured." I refused. We argued a lot. She still loved me but couldn't deal with my being gay and I was already on my own and at college. She went to a psychiatrist herself and the message (which was probably unusual for that time and place) was to leave me alone if I was happy with my choice (in those days it was felt to be a choice rather than something you were born with. Who knows?)

Joseph, you are lucky to have such an understanding mom, who loves you, and who accepts you for who you are. You are still young enough that she will have the "final say" in many situations and you should respect that. To this day many families kick their gay son or daughter out of the house and disown them. 

My dad didn't know about me until much later but interestingly enough, he just loved me, no matter what. My mom on the other hand had to "deal with it" and was quite upset and miserable for a year or two. Don't know if my dad just didn't think about it, or accepted it.

Now both my family and Gregory's love and adore us both. He is an integral part of all family celebrations and I think we might be the favorite "daughter-in-law" or "sister-in-law" of both families :-)

I use these expressions figuratively as G and I do not take on gender roles. In the relationship, he does what he is good at and I do what I am good at and those things neither of us like to do we share. In the "olden days" people used to wonder while role you took. Are you the wife? Are you the woman? Are you the bitch? Top? Bottom? Maybe some people still think (and maybe some gays still behave) that way but Gregory and I do not feel the need to identify in that way.

My first relationship with a man lasted 13 years before we grew apart and finally separated on a friendly basis (after much arguing and anger.) My current life partner and soul mate, Gregory, and I met 30 years ago and are still going strong. (I am 62 he is 58.) We were participated in a "Civil Union" ceremony in Vermont recently and took part in a "unity" ceremony during the March on Washington many years ago. While the issue of Gay Marriage is a controversial one, we believe that making a commitment to each other (of whatever type) is what matters, and making that commitment in the presence of others is important. 

Before deciding that I was gay, I had had many girlfriends and even loved one or two to the point that I thought I would get married. Final analysis, men were more important to me in a relation (and in lust :-) 

I mention this about women only because you are still young yet. Gay could be it for you or it could be a "phase." I do not mean this lightly and am not disrespecting you and your decision, I am only saying that as we "grow up" (and I am still growing up :-) we explore and experiment with who we are and who we want to be. These decisions change and take unexpected turns. I am only advising that you keep an open mind and be prepared to explore, experience, learn, and grow. I am sure you will do a fine job of defining who you are!

Check out my web site if you get a chance. When I came out there were no older role models for me to follow. Most older gays were either in the closet still or behind closed doors in their social groups. Now that "gay" is so much more accepted (in most places but certainly not all) role models are visible on TV, in the movies, and on stage. Even an opera or two has homosexual overtones, like Billy Bud.

Back to the web site, you might find it interesting to see how Gregory and I spend our lives and what is important to us. There are pictures of our 30th anniversary and an overview (with pictures) of our 30 years together as a couple.

If you have any questions you would like to ask I will probably answer them but may refer you back to your mom, another source, or politely decline answering on the grounds that it is too personal or that I don't know a good answer. Ask anyway.

I have enjoyed thinking about these issues and writing to you about them. I in no way mean to imply anything about you or your life and do not assume that you are anything but a thinking, feeling, intelligent young man, but wanted to share some of my thoughts about ME! 

Take care, say hi to your mom, drop me a line if you get a chance, and do check out www.michaelandgregory.com

Fondly,

Michael

Some Advice and a Quote

Great advice from E. B. White to a student. From a book by Michael Sims, The Story of Charolotte's Web: E.B. White's Eccentric Life in Nature and the Birth of An American Classic. 2011. P4.

"Remember that writing is translation and the opus to be translated is yourself."

A great line from a poem by E.B. White, writer of Charlotte's Web in the same book, P168.

"In the poem he admitted that he saw himself as the spider, groping his way on a tenuous thread of his own creation, hoping eventually that ― by trusting the vary act of making the web ― he would wind his way home to where he started."

Growing Up Milestones

Being a Gay Man of 70 years, I have not been able to measure my life in milestones as do non-gay men who grew up when I did. In the traditional situation, a man measures his life by his accomplishments and successes but also by family events.

As far as accomplishments, I was able to celebrate completing my BA, MA, and Advanced Certificate. I also earned the ubiquitous ABD (All But Dissertation.) I was able to celebrate the self-publication of two volumes of poetry and the opening of Michael's Museum: A Curious Collection of Tiny Treasures as a permanent exhibit at Chicago Children's Museum on Navy Pier.

On the family front, I celebrated my Bar-Mitzvah but it stopped there. I was not allowed to celebrate my wedding. I was not allowed to have/adopt children. I did not watch my child begin kindergarten or graduate elementary or high school. I did not see my son off to college nor hope that he would join the fraternity I did.  I did not walk down the aisle with the bride, my daughter, on my arm nor wonder when she would make me a grandfather.

Nowadays, Gay men and women can choose to include these milestones in their life. Too late for me but grow up I did anyway and many unique milestones did exist none-the-less. It was just that they were not traditional.

My first milestone was owning my own refrigerator. I.E. not my mother's. I could fill it with the food items I wanted and arrange it in a way that made sense to me. As a child my parents would tell me "Don't "sit" in the refrigerator!" as I stood with the door open contemplating what I wanted to eat. As an adult, just to show them, I opened the door to both the freezer and refrigerator and literally sat on the shelf created between the two.

Another milestone was the purchase of my first car. I was working at University Ford at the time in Champaign / Urbana, Illinois and going to school at the U of I. The sales manager took me under his wing and helped me through the details of purchasing a car. The car was a gold Mustang with an opera roof (they called it in those days: the roof covered in beige vinyl.)

Getting my BA degree. My first job when I began teaching in 1972. Completing my Masters of Education in 1980 and my Advanced Certificate in Administration and Supervision in 1982. These were milestones too.

A big milestone, which is shared with the general population, was my retirement from teaching in 1999.

I share all of this in getting to the point of this blog: Ben, Ken, Alaksh, and Isaac.

Gregory, my life partner was diagnosed with Alzheimer's Disease in 2004. He did well, with my help, for approximately 8 years but then his decline necessitated additional support and care.

The first round of care giving "companions" included Ken and Ben. Ben made the transition to needing a companion for Gregory easy if only because of my having known him since he was a little boy, nephew of dear friends. He was responsible, loving, and very good with Gregory. Their mutual love of music helped them pass the time and Ben's knowledge of psychology helped him deal effectively with Gregory's needs.

While both were great and very helpful to Gregory, Ken was more of an actual milestone for me. Besides being Gregory's companion, he ended up living with us for a couple of months. His lease was up and instead of finding a new place, I suggested he take over our guest room for the few months he had left to his studies.

Being newly from Japan, Ken and I had many discussions about differences in culture. We learned from each other. He offered young, new, culturally different ideas and I offered older, wiser ideas. We often had dinner together and visited various Chicago sites. Ken quickly became more "family" than "companion."

He caused me to think deeply about my culture and discuss/explain it in ways that were as honest as possible and not too stereotypical. We talked about cultural differences including racial, sexual preference (read GAY!,) male vs female, lifestyle, rich vs poor, and many more.

When he was looking forward to applying for his MA, after completing foreign student core courses in Psychology at Northwestern University, he sought my advice. I helped with the application essays. I helped think through the opportunities of the various universities he was thinking of attending.

With his acceptance in Nashville, his assistantship came with a job in which he needed a car. While he had been driving for a long time in Japan, he needed to learn the Rules of the Road American Style including driving on the right/wrong side of the street (in Japan like England driving is on the left side of the road, not the right like in the U.S.)

So I offered to give him driver's lessons and let him use my car to practice and take the test. This opportunity gave me what must have felt like the first father/son relationship I had ever experienced.

He was careful, responsible, and respectful. I was calm, patient, and helpful. So in some ways this was not like the "typical" father/son relationship.

At one point while about to pull away from the condo, we had an argument about how to set the side view mirrors. He tried. I corrected. He disagreed. I disagreed. He said he had "googled" it.

I backed off and said, "Lets look at it together when we get home." I let him practice that day using his mirror adjustment technique which took a certain amount of bravery on my part. We laughed and I asked him if he realized that we had our first father/son argument. I am not sure either of us had thought of it in that way until that moment.

Turns out the "google" had presented a "traditional" and a "current" way of thinking in side view mirror adjustment. Mine was the traditional, he preferred the current. We agreed to compromise using the best of both techniques. So again not like most "typical" father/son encounters.

When Gregory and I took him for the final drivers test, we sat nervously in the waiting room. He returned from the test with a smile on his face. He had passed the test. I actually cried fatherly tears of pride. In him and in the role I had played.

The relationship Gregory and I had with Ken definitely became one of family.

After seeing Ken off to Nashville, Alaksh next came into our life as Gregory's companion. Alaksh was completing his MA in Biology at Northwestern and was Indian.

Similar conversations regarding cultural differences took place. In addition, Alaksh loved to cook and one day a week, he and Gregory would plan dinner, shop, and cook. I would come home from my errands to a wonderful dinner. Most times he cooked "Indian," but also did a mean "Chinese" and "American."

To celebrate the Indian holiday Divali, Alaksh took us to a University Indian Student Association party. We watched various groups entertain and afterwards partook of dinner. One time Alaksh cooked for Gregory and me at his apartment and we got to meet his roommates.

He often offered medicinal and health cures as passed down from his Grandmother. Often he decided that I was like his Grandmother when if fact Alaksh took care of Gregory and me like he was our Grandmother.

Alaksh was accepted for his PhD in Boulder, Colorado. Again I helped with application essays and decision making. Father and Son relationship or at least Grandmother Grandson. Periodically Alaksh calls just to chat and sometimes still to ask my advice.

We miss him dearly and Alaksh too became part of Gregory and my extended family.

Recently, Isaac who is Gregory and my God Son and son of friends Jan and Jake, moved in with me. He was going through a break up with a girlfriend, their apartment lease was up, he was looking forward to quitting his job and earning money as a waiter for a while, and then leaving for Japan to teach and follow his passion for all things Japanese.

Again the father/son but not typical took place. Advice asked, advice given. Wisdom shared, young blood new views offered. Social media and computer expertise shared. Living together expectations most often met. Sometimes, but rarely, heads banged. Meals eaten and cooked together. Part of the difference in this experience is that since January, Gregory has been living at The Lieberman Center Memory Care Unit so Isaac also brought company and companionship to me.

I shared all of this, Ken, Alaksh, and Isaac, as the point of this blog because these three young men have given me a new milestone to celebrate. That of being a mentor to someone younger, much like the relationship a parent has with a child but not fraught with the emotions that usually come with that relationship.

It felt good to have opinions to give, well thought out ideas to share, experiential comments to make. All without total personal investment and being responsible for having raised a child. It felt good to be valued, respected, queried. I love these three boys like sons, but better!