When Reality Isn't Real and the Imagined Is

I do my best thinking when I am in bed at night, lights out, heading towards sleep. For me, it is that floating level which quiets the noise, quiets the voices, and allows the inner messages to arrive.

I work at remembering my thoughts which come mainly in fully formed images packed with much information and easily forgotten, by adding text to the mind pictures to help me remember them so I can write about them the next day, as I am doing now.

• • •

Last night I finished reading Aliceheimer's: Alzheimer's Through the Looking Glass by Dana Walrath, a series of short readings about Alice, her mom, on Alice's journey with Alzheimer's. Some of the readings were sad, some uplifting, some insightful, some just were.

Obviously reading the book made me think about Gregory and the many adventures on our 12-year journey with Alzheimer's. The memories are stronger and the grief returns for a holiday visit and at other special times: Christmas, Valentine's Day, Birthdays, etc.

Some of the readings had to do with how Dana handled Alice's hallucination, being lost in time, not remembering losses, verbal repetition, losing parts of identity, etc.

Dana has very good insight into why these lapses occur, what they might mean, and how to handle them during interactions with her mom. I wish I had read her work while Gregory was still here, it would have helped.

I got to thinking that to the person living with Dementia, what they are experiencing is REAL. To us, often, what they are experiencing is the results of the progression of the disease, the breakdown of the brain, the loss of cognitive ability. We forget the person!

To us, they are living in the past, hallucinating, processing differently, etc. We know that what they are experiencing is not REAL but only perceived, we try to keep them safe, to assuage, to convince, to explain, to help them understand, to correct. We forget the person!

To us, their experiences are obviously a bit of "crazy," (sorry for the pejorative but sometimes that is how the behaviors present themselves especially towards the end stages of the disease.)

But back to the person with the diagnosis, WHAT THEY ARE EXPERIENCING IS REAL and no matter what we think, to them it is REAL! How difficult must that be for them? We often do not stop to think about the person diagnosed and what they are going through, we only think about our own attempt at maintaining the situation and "caring" for them.

What triggers a behavior might not be real anymore, but the behavior and the experience are real. When thought of in that way, it feels so painful to me that often there is little we can do except distract, hold a hand, assure, and possibly for a moment or two alleviate the confusion, frustration, fear, pain, etc.

But there is more that can be done. Be creative. One can attempt to understand the NEW trigger and if possible acknowledge it. If she sees dad (long dead,) treat that as though it is real. Ask, "How is he?"

If she sees monsters outside the window when it gets dark out, lower the shades before it gets dark and if you forget, pretend to "disappear" the monsters with a "magic stick" or "monster eradicator" poised as a pencil eraser and certainly "protect her" rather than trying to change her perception. "I am here to save you, Mom," will get you further than "Mom, there is no one out there!"

If she asks the same question over and over again, answer it over and over again. It is the least you can do. XXX wrote down the answer and handed it to her mom. Next time mom asked the same question, XXX referred to the written answer. Repetition of asking slowed down because mom was able to hold the answer in her hand. Be creative!

Be her mother is she thinks you are, let it be right after World War Two if she thinks it is, congratulate her on winning the beauty contest if she thinks she did. Telling a lie is OK sometimes!

Observe her behaviors and see if they might be pointing to other needs like thirst, hunger, needing to go to the bathroom which, for example, might be expressed by talking a lot about ocean voyages or how hot she feels, farms and animals, and stinky situations.

Above all, don't fight it, if it doesn't matter! Pretend that the REAL is real and chances are both you and the person you love will be better able to cope with whatever comes up.

If all you can do is to alleviate the confusion, frustration, fear, pain, etc. for a few moments, at least those few moments were free of confusion, frustration, fear, pain, etc.

So be it!

Different Realities

My friend Kate recently posted, in her blog, a piece on "realities." It really moved me and gave me some new information about my journey with Gregory and Dementia/ Alzheimer's. Yes even though Gregory will be gone two years come October, I am still processing and learning and sharing my understandings.  https://kateswaffer.com/2017/07/23/sharing-our-own-reality (opens in a new window) So here is my reply to Kate:

Kate,

This particular post really spoke to me (brought tears) and brought back many difficult memories as you (and Paul) so accurately described regarding living in one or the other's reality and needing time to oneself, for the players on both sides of Dementia!

Gregory and I always enjoyed being with each other but also loved our private times and solitude, vacations together and vacations apart, together friends and personal friends, together activities and personal activities, likes and dislikes.

We learned how to be in the same room working alone or in different rooms working together. Dementia/Alzheimer's changed all that, and not for the better. But I must say, that love conquers all so we learned to be flexible (mostly me but Gregory as well) and we changed to accommodate his changes and our needs.

While alone time took new forms, we both were able to secure periods of time to ourselves by enlisting the help of friends and hiring "companions" for Gregory. He got to be "rid" of me for an hour here and there and I was able to get "rid" of him :-) We both benefited!

In addition, not only do the realities (abilities) change in a moment but they can also get weaker slowly, change back to where they started, or become some totally new and strange reality!

This makes for a difficult time in not making assumptions about the person with Dementia's abilities and treating them at all times with respect while at the same time not going too far to allow them great frustration and confusion! 

Also, I am not sure that anyone out there (other than extremely close friends who are truly altruistic and enlightened in themselves and life, having been in a similar situation) could really understand my reality.

I was lucky to have half a dozen people who truly could identify with what I was going through and the others, even though well meaning, proved to be hurtful in their comments and awarenesses and dealings.

A new understanding for me with your post is that I just assumed that Gregory's life reality was the same as mine and what was changing was the reality of his cognitive skills and abilities.  I just assumed both were the same. 

By life reality, I mean that we thought the same, believed the same, experienced the same vs cognitive reality based on what he could do and his failing abilities. I understand now that his cognitive ability reality was changing but failed to realize that the mental, philosophical, belief, assumed, memory etc realities were changing as well.

I could have done a much better job in my caregiver partner role if I had thought of that! Not chastising myself but perhaps sharing that understanding of reality with others so they can be better at what they do.

Meanwhile, friend, I wish I could make it all better for you, and besides my positive thoughts sent your way, I send platitudes like KEEP ON KEEPING ON and HANG IN THERE and KEEP UP THE GOOD WORKS, and I LOVE YOU SO MUCH. So many depend on your words and your wisdom!

The Worst Part of Alzheimer's

Last night as I was drifting off to sleep, I was thinking about the worst part of being on the Alzheimer's Journey with Gregory. At first so many visions assaulted my mind that the answer to my own question was one of numbness. The losses? The frustration/confusion? The sorrow/loneliness? The joys/sorrows? The inability to understand, and at times even to know how to understand the trajectory of the disease?

Then, like a flash, the answer/insight came to me: Life. Living. Being alive ... that was and is the worst part of the Alzheimer's Journey. 

"To be alive is to suffer" according to Buddhist understanding. In part we long for something, feel pain and loss in our lives, look for stability and predictability. We want things to always be the same, the good life; but in fact things change and what is ... is ... and it is not always good. 

Our lives are defined by dissatisfaction. We want better and we want good. Those are not bad expectations but it is not possible to hold on to them forever either. So dissatisfaction is how we deal with the reality of being alive. Things change, things are not always good, everything dies. Everyone changes, everyone dies. Dissatisfaction arises out of our own ignorance of our reality, wanting it to be something other than what it is. Our longing, craving, thirsting is what dissatisfies us as does the changing of our reality.

The study of Buddhism tells us that if we are able to sit with our dissatisfaction, look closely at the reality of life, live in the here and now; we can learn to accept this human dilemma and live wholeheartedly in the here and now, in the face of impermanence, knowing that some day we are all going to die, and that is part of life. We can increase our tolerance of instability and change and learn to appreciate today!

We are different people than we were when we went to sleep last night. We will be different people when we go to bed tonight than we were when we woke up this morning. These differences, at the basic level, are due to sloughing off cells and growing new ones. These differences are also based on our experiences as individuals: what was done today, what was seen today, what was heard today, what was said today.

These differences are what make life and love interesting and vital and in turn make relationships interesting and vital. There are failures and there will be successes. There are illnesses and there will be wellnesses. There are problems and there will be solutions. There are arguments and there will be "making ups." There are tears and there will be laughter. There are sorrows and there will be joys.

Even armed with this knowledge, I so still lament not being able to hold on to the physical interactions which Gregory and I used to have. This part of Gregory's death has been the most difficult part for me to let go. I want to kiss his lips, look into his eyes, smell him, tell him in person that I love him. I want to hold his hand, talk with him, share, hear his voice, walk along the beach together. I want to buy things for him, cook dinner for him, get him flowers and dark chocolates.

But those things can only exist now in memories and when I visit those memories, at times, I panic at the finality of these physical interaction losses. I want to hold on to them and not let them go but that is not within my control. Death arrived, in Gregory's case bringing completion and peace for him as well as for me. In my case it also brought deep grief for the change of a deep love, and is a constant reminder that nothing is permanent. Everything changes! The love has not been lost, but is has changed.

I have learned to "be with" Gregory physically in new ways: I talk with him at bedtime. I still bring him flowers and chocolates (which I eventually eat.) I acknowledge him as I pass his photograph which sits with his shrine in the bedroom. I sound a Tibetan Prayer Bowl to say hello. And periodically I dream about him. 

In my heart I celebrate holidays with him. I buy myself little gifts from him (which I used to do with his permission while he was alive.) I tell his stories and I tell our stories. His name lives on with family and friends, at Chicago Children's Museum, in my blogging, in the More Than Ever Education Fund, in the documentary Alzheimer's: A Love Story which has been accepted to over 75 film festivals worldwide and has won over 35 awards including two from the most prestigious American Pavilion of the Cannes Film Festival. 

So to be alive, to live, is to encounter changes including the ones death brings, including the ones Alzheimer's brings. We will all die. That is not a profound statement. We will also live and hopefully learn to accept that everything changes, that the reality is that we cannot hold on to things permanently, hold close for ever anything, except in our memory while we still live, and that is profound.

Living with Alzheimer's teaches that lesson so well and if you do a good job of giving and receiving unqualified love during the journey you will survive. You will suffer but you will survive, until it is your time to move on. 

In some ways the most important part of the story of Gregory's and my life together is what happens between the lines of: Gregory was born. Gregory lived. Michael was born. Michael lived. Gregory and Michael met each other. Gregory and Michael loved each other.  Gregory lived with Alzheimer's. Michael chose to walk the Alzheimer's Path with him. Gregory and Michael continued to live and to love and received many gifts of understanding from each other. Gregory died. Michael grieves but continues to live. Michael will die. 

That is the reality, so why waste time being dissatisfied? You are doing everything correctly. Be forgiving if you back-step knowing you will again move forward. Observe, acknowledge, accept your reality, and get on with the miracle and joy of being alive, no matter what it may bring!