Gratitude

Love Lifts Us Up

This beautiful story of love between Edie and Anne in many ways parallels Gregory and my story of the experiences, and growth, and love based on our 12 year journey with Dementia/ Alzheimer's. It is so moving for me to hear the story from Edie's point of view as Gregory was never able to share what it was like for him. It is good to have both of them as Facebook and BLOG friends from across the miles in Australia. Knowing them helps me to feel less alone.

Young Onset Dementia Support Group LOVE LIFTS US UP... This is about our experience in dealing with a diagnosis of dementia and the impact this dreadful disease has had on our relationship. I, Edie, was aged 59 when diagnosed with Younger Onset Dementia, Alzheimer's Disease five years ago this month. My partner, Anne, noticed worrying signs and changes in me from 2005. I rely on her memory to be able to give you an accurate picture of the last 10 years. She says I started withdrawing to the study after dinner and spent hours at the computer playing computer games. Initially she thought I was doing paperwork for my business as a Driving Instructor but she eventually worked out I was playing Hearts. I stopped sitting and relaxing with Anne in the evenings as we'd always done and would only watch sports programs on TV. Previously we'd watch several programs together on Aunty or SBS. I was becoming more and more negative. I didn't particularly want to socialise, especially when there were more than a few people. I told Anne some time later that I couldn't follow group conversations and didn't want to repeat myself. Anne says I used to get defensive or angry if she tried to talk to me about changes she observed. If she came into the study I used to shut down the computer so she wouldn't see what I was doing. We had developed strong and healthy communication over our years together. We were both committed to resolving misunderstandings and differences and working through issues which arise in relationships. We had no secrets. We had no need for them. But now I was no longer able to put into words what was going on for me; I didn't want to think about what was going on in my head let alone my life. I didn't tell Anne that I was forgetting where to pick up clients from for their driving lesson and that I was going to the wrong house. My memory had been one of my strongest assets. My attention to detail and ability to remember dates, addresses etc was well known. We were stopped by a police officer for a licence check one night and I didn't have my driver's licence with me. But when I told the officer my driving licence number, he shook his head and waved us on. I was progressively cutting off from myself, my thoughts, my feelings and Anne. In addition to increasingly disengaging, I was becoming more forgetful, easily frustrated, lethargic, defensive and negative, particularly at night. I'd get angry with Anne sometimes and stomp out of our bed into another room. I'd accuse her of saying and doing things I'd thought she'd said or done. Of course I'd forget about moving beds and getting angry and would make excuses about not wanting to spoil her nights sleep. I was in a bad place. Fortunately I don't have any memory of this time, because if I did I'm certain it would have been the most depressing, frightening and isolated time of my life. Apparently we'd arrange to meet for lunch and I wouldn't turn up and I'd forget about arrangements which had been made to catch up with friends. Remembering events and dates and organising myself was becoming more and more difficult. I was increasingly leaving more to Anne to arrange holidays, shop, cook, and clean. We went on safari to the Kruger National Park in 2007, and to Vienna, Prague, Croatia and Norway in 2008. Unlike all previous travel, I didn't get involved in any of the organising, despite Anne's attempts to engage me in the process. I was very keen to travel of course, as we had travelled far and wide over the years. Twice at airports during this period when Anne went to the toilet, I went off looking for her and she found me wandering in a distressed state. I stopped contacting friends and initiating outings. I was leaving for work earlier and earlier.  Neither of us handled this period of our lives before diagnosis very well. I was blocking out everything and everyone, refusing to admit there was a problem and unwilling to share my fears, vulnerability and grief. Anne was getting increasingly concerned, frustrated and impatient with me. We were in unchartered waters withdrawing from each other as a way of trying to manage the situation. It was the worst time of our lives. When I was having a knee replacement in 2008, our bank rang and told Anne we were two months behind in credit card payments and that a third payment was almost due. I had always been an exemplary bookkeeper and financial manager and Anne had left all financial matters in my capable hands. But when she found a mountain of unattended bills and a very late BAS statement she reluctantly inherited my role. I used to sit at the desk with those stupid, unpaid bills every weeknight and yet still managed to ignore them. When I think about that now, that was quite an achievement! I had many serious falls from 2006-2009. The last one was when we away with family and I tripped, fell and shattered my patella. Fortunately the knee replacement I'd had four months earlier wasn't damaged. After it was wired we went on a planned holiday to North Queensland with friends. Although all this unfathomable stuff was going on and I was in a full leg brace and totally dependent for six weeks, we never at any point actually gave up on life or stopped wanting to be together. Although we were both depressed at the time, we are so grateful that in our darkest times, and there were many, our love for each other, though truly tested, remained steadfast and enabled each of us to go on. Anne persisted in trying to get me to see our GP for two years. I finally agreed early in 2009. When I came home Anne asked me what the doctor said and I told her she said there was nothing wrong. I don't even know whether I actually went to see the GP, or if I did whether I'd forgotten to tell her why I was there. Anne insisted we'd go back together. My memory problems were finally getting addressed and I could start to believe that maybe we could get through this terrible time. I underwent a comprehensive neuropsychological assessment over several weeks followed by appointments with other specialists. We now attended all appointments together and I was no longer feeling frightened or isolated. Our open and honest communication returned. Anne had already decided in 2009 that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ½ years in an environment which worked really well for everyone. I now knew that I still had something to offer and I wanted to take some pressure off Anne. I was no longer disengaged. After the neuropsychological review in mid 2010 the neuropsychologist wanted to come to our home to give us the feedback. He said that significant deterioration had occurred in the 12 months, particularly in new learning and memory and indicated the likelihood of Alzheimer's. We sat silently in the lounge room for a long time after he left, feeling appreciative for the thoughtful, caring way we were informed but numbed by the news as well. Eventually we stood up and cried in each other's arms for a long time. The silent presence in the room was the previous experience we had with Alzheimer's; Anne's mother had died in 2005 after living with Alzheimer's for more than 20 years. We had moved from Melbourne 23 years earlier to assist her father in her care and Anne became her primary carer after her father died in 2002. We knew a great deal about dementia. The thought of Anne having to face this dreaded disease again had paralysed me and it was the main reason I shut down for so long and had so much difficulty in facing the situation and talking to Anne about it. My motto must have been “If a thought is unbearable, it's best not to think it and it'll go away”. It didn't work, because my denial and avoidance made our lives much more difficult than they needed to be. Anne says having a partner with dementia is a very different experience to having a parent with dementia. I must have felt guilty that I was going to be a burden for Anne, I didn't understand at the time that there was nothing for me to feel guilty about, and Anne had to overcome her reluctance to take command of the situation and not rely on me to make good decisions. A specialist neuropsychiatrist in Younger Onset Dementia confirmed Alzheimer's in September, 2010 after a PET scan and a review of the earlier MRI. We now knew what we were dealing with; there was relief in that and a growing belief that we could launch ourselves to a better place, in time. It had been more than five years since Anne had first expressed her concerns to me. The first two years were a maelstrom. I had to retire from the work I loved; we had to sell my car and try to sell the business. There was a succession of new people entering our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. The required form filling was unbelievable but thankfully Younger Onset Key Workers assist newly diagnosed families through the process now. We became actively involved in the Younger Onset Dementia world by participating in the three day Alzheimer's Australia “Living with Memory Loss” program. It was a great experience for us and helped establish a small, local community of care and support with people in a similar position. I joined Alzheimer's Australia Victoria Reference Group and Alzheimer's Australia National Advisory Committee. I'd been on committees throughout my work life. A whole new world was opening up for me again and I was now beginning to feel more positive. We also commenced major renovations to our home which were completed within two years of my diagnosis. It was stressful and inconvenient, especially when we didn't have a kitchen, and then a bathroom, but it was worth it as it has made our lives simpler, easier and more comfortable. We also have a beautiful garden and a gorgeous 14 year old dog called Shinji. We have lived where we live for 16 years and we both love our home and its location, and we plan on staying there for as long as possible. We'd be the first to acknowledge there are no short-cuts to truly accepting such significant change to our life circumstances, and that we didn't handle things as well in the first couple of years as we do now. Anne told me, I once said to her “I may as well be dead”. I can't imagine ever thinking or saying that now. Good communication between us is the key to where we are today as well as the support of significant others. We gradually learned to accept then embrace our new reality and the changes that happen along the way. We both had to learn to manage our feelings in these new circumstances. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We both had to face the awful grief, terrible sense of loss and fear of the unknown that comes with truly facing a new reality. We had to accept that the future we'd planned, of travel and retirement and long, lazy lunches with friends were not to be. But in facing the truth together it became possible to accept it and this brought with it a serenity and even deeper love and respect. We gradually became more relaxed, contented and good humoured. For five years now, since diagnosis, we have seen each other grow to a place of acceptance, contentment and peace. It's not devoid of frustration and stress for Anne, I know, but negative feelings soon subside because that's not what we want our lives to be. I used to be so hard on myself, but I'm not now. We choose to be on the side of life and we are grateful for what we have, and that helps us deal with our reality. There is no doubt that dementia is disabling, challenging and life changing, but there is much more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I've lost. I have this moment in time and that's enough. And for us, dementia has actually strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn't have had. Love is at the centre of my life now. Peace and calm descended on our household towards the end of 2012 and it continues. Anne retired in June last year and that has made life even better for both of us. We enjoy spending time together, but we also have our structure and routines that give us time apart. I so look forward to the end of the day when we're together again. We have been fortunate to travel to China, Botswana and Vietnam since my diagnosis. We may not travel overseas again, but that really doesn't matter. Dementia forces the end of some things, not all things, but it also opens us up to new things as well. We acknowledge the importance of others in our dementia journey, people we've met through Alzheimer's Australia, Younger Onset Dementia community, couples and individuals who are in the same position as ourselves, and staff who support people with dementia; special family members and friends who stay connected as well as professionals who assist us along the way. We appreciate you and thank you for your help and encouragement. My relationship with Anne is a very loving, positive and enjoyable partnership. We have known each other for most of our adult lives and been in a relationship for just over 31 years. We've had the most amazing life together. We all know there is so much more to sexuality than sex. We're more playful and appreciative of each other. We embrace, cuddle and hold hands more, although we've always been very tactile. There is more tenderness, thoughtfulness, care and respect. We know we both want to be the best we can for each other. I am always telling Anne, “I love you with all my heart.” I write it on her back in bed at night and on any part I can find during the day. I have never loved her more, nor have I ever felt as loved by her. I don't remember a lot, but I know that the most important thing to me is our deep love for each other. What else could I possibly need? I can honestly say I have never felt more contented in my life. I don't feel pressure, anger, frustration, fear or regret at all. I don't have bad memories. We are here for each other. We feel blessed. I often find myself looking at Anne and I'm overwhelmed and bursting with feelings of love and gratitude. And I just have to tell her, again and again, how much I love her. I believe our intimacy has enabled both of us to experience deep personal and spiritual growth and healing. Together we are more than two. I describe us as “Team formidable”. Recently Anne and I were having a conversation about the many good things which have happened to us and the many amazing people we have met since dementia has entered our lives. Actually Anne was doing all the talking, about dementia being transformational and giving us opportunities to grow and so on and so forth. I said, “Our hearts are bigger”. After a couple of minutes, Anne closed her mouth, shook her head, and said “Edie, you've just said in four words what I was trying to say in 100. That is the most profound and beautiful thing you have ever said”. Our wish is, whatever your connection to dementia, we hope it makes your heart bigger too.

Happy Anniversary

On today, which the one month anniversary of Gregory's passing, I am doing really well and honestly believe that I am allowing my emotions to visit as they need. Every now and then I am overwhelmed (expected) with missing him. Every now and then I will have a memory that triggers my tears. Once and a while I will miss not being able to experience an adventure with him.

But for the most part I feel good and joy is the pervasive emotion. I find myself talking to him, feeling his presence, and sometimes (if only in my mind?) he responds or takes my hand or we laugh together.

In some ways, thinking about and understanding Death makes no sense so why think about it or try to understand it? Death is mysterious, it is magical, it is scary. But Life does make sense and at least one can try to understand it. Life too is mysterious, it too is magical, it too is scary ... but at least one can live it and experience it. Death not so much!

When I am down, I think about Gregory no longer having to deal with Alzheimer's and my being free to pursue the next chapter in my life. The realization that all of his dementia difficulties and limitations went "poof" when he left his corporal body was amazing to me and gives me peace of mind.

By the last few years of Gregory's and my life, Dementia/ Alzheimer's was the dominant partner in our relationship. All decisions, activities, and time spent together was interpreted through it. We both made the best of the situation, developed new ways of interacting, and were able to spent time IN THE MOMENT with great love and joy.

My life is almost fully functioning once again. I know that I still have a way to go to fully open outward. As Gregory's life became more insulated and safe and narrow, so did mine. Growth continued for both of us. His was more towards patience and receiving, mine was more towards patience and giving.

We both learned more about being in the moment. In many ways my world became about him. Now I can begin to look at my world in relation to the world. It is a little scary but I am ready.

A lot of this sounds "trite" but is true. Short of poetry, when discussing death and life and love, all the possible word combinations have been written and rarely do you read anything totally original. So let these words try to comfort you anyway (and me.)

To celebrate the one month anniversary of Gregory's death, I lit a yahrzeit candle, will visit the residents I've come to love at Lieberman Center, and will go out to dinner with Isaac, God Son.

Growth

Panchamaya Model

The Panchamaya Model is an ancient model of Yoga and Mindful Meditation that is the focus of a six week session that I am taking. The instructor, teacher, guide, guru, new friend is Corinne Peterson. 

http://www.corinnepeterson.com

You may remember a number of postings in the past when I was taking her Yoga Nidra classes. Yoga Nidra has helped so much, especially is dealing with Gregory and my journey with Alzheimer's, and I am grateful to Corinne for the great gift she has given to me.

Now that Gregory is lovingly ensconced and embraced by The Lieberman Center, it is time for me to focus on me. Slowly I have been regaining my sense of independence, relationships, emotions, life activities, and life purpose. What I know, however, is that I have let my physical body go to wreck due to lack of sleep, emotional disturbances, stress, lack of exercise, and comfort eating.

While most has calmed down since Gregory moved into Lieberman in January, the "body" is still out of control. Overweight. Huge belly (comparatively.) Achy joints especially knees and hips. Back pain. Little exercise. Little stamina. Loss of muscular strength. Shortness of breath. (How is that for being honest as I wash my laundry in front of the world?) 

I decided that it was time to take these "warning signals" to heart (literally) and do something about it. This is where I have started: 1) Focus on weight loss with my therapist, 2) Renewed LA Fitness gym membership, 3) Committed to a year with a personal trainer, 4) Am taking Corinne's Yoga session, 5) Have begun eating better.

My guess is that you will begin to see these themes show up in my writing. P.S. I have also decided to try to revitalize my writer's BLOG so I will be posting this type of personal grown at michael a horvich writes. I will repost this there and then continue it only on that site. So if you are interested in following:

http://mhorvich.blogspot.com

• • • • •

The following provides a brief overview of the Yoga model which I will be working with over the next six weeks. Tomorrow I will write about my experiences with the first session.

Pancha Maya Kosha Model: Yoga Therapy and the Five Koshas
(http://yogauonline.com)

Yoga offers such a broad range of healing benefits, because it works holistically on the level of our whole being, not just the physical body. According to yoga philosophy, we are not just our physical body or mind, we are holistic, multi-dimensional beings made up by many different, interactive levels.

In the yoga framework, these levels are referred to as the five sheaths of our being, or the Five Koshas. To understand the Five Koshas and the role they play in yoga therapy, it's easiest to think of the Koshas as a series of Russian dolls, each embedded within the others. Starting from the outermost layer and moving towards the core, the Five Koshas proceed from outer to inner in greater and greater levels of subtlety:

Annamayakosha-The Physical body. This sheath represents the physical body, the 'regular' gross expression of our body that we can see, touch and feel. The Sanskrit word Anna means food, and the word mayameans appearance. This is the sheath of food, nourished by and created by our daily intake of food. TheAnnamayakosha is our physical body, the most familiar aspect of our being. As we practice yoga asanas, the physical body is the starting point of our experience.

Pranamayakosha-The Energy body. According to yoga therapy traditions, this is the second layer of our being.Prana means energy, but not energy in the usual Western meaning of the word. Rather, prana is the life-force, the vital energy which flows through and enlivens all our physical systems. The breath is the most physical expression of prana, and prana is closely related to the breath. Breath awareness and breathing practices, calledpranayama, increase and facilitate the flow of prana in the body and balance the flow of the life force to all the physical systems.

Manamayakosha-The Mental-Emotional body. Manasmeans mind, and the Manamayakosha is the layer of our being expressed as mind, emotions, and feelings. These are the mental faculties with which we absorb, process, and interpret input from our life (presented through the senses of the physical body). It is like a supervisor in a factory, which unfortunately often mistakenly takes on the role as manager.

Vijnanamayakosha-The Wisdom body. The fourth Kosha is considered part of the subtle body. Vijnana means knowing, and this sheath represents the higher mind, the faculty of wisdom, which lies underneath the processing, thinking, reactive mind. This is the level of our being, that has the higher wisdom to guide us through life and lead us to higher and higher levels of truth and integration. It represents the reflective aspects of our consciousness, which allow us to experience a deeper insight into ourselves and the world around us.

Anandamayakosha-The Bliss body. This is the fifth and final sheath of our being. Ananda means bliss, not bliss in the sense of emotions, such as happiness or pleasure, but an expanded, unbounded experience of reality. The ancients viewed the experience of the Bliss body as an experience of the deepest level of our being, an unbounded, blissful state of peace, joy, and love.

The Koshas are viewed as different, beautiful manifestations of our essential universal nature. According to yoga philosophy, this is known as Atman-the unbounded, universal Oneness of all that exists.

In practice, how do the different levels of our being interact? Take the example of depression. When we are depressed, we cannot help but slouch, rounding our shoulders and dropping our head forward Our breath becomes shallow and more restrained. In this way, our psychological mood, associated with our mental-emotional body (manamayakosha), affects our physical body (annamayakosha), as well as our breath and energy body (pranamayakosha).

In a yoga therapy practice, we begin to bring greater integration to the physical body with yoga asanas and to the breath body with yogic breathing or pranayama. As the flow of vital energy is freed up in the physical body and breath body, this in turn creates greater vitality and integration in our mental-emotional body. This is why many people find that practicing yoga for depression often improves their mood and well-being considerably over time.

Of course, such deep-level changes don't happen overnight. Over the long term, however, yoga therapy can create permanent healing, because it helps bring greater integration to the deeper levels of our being, leading to increased balance, wisdom, and spiritual enrichment in all areas of life.

Comment on "A Play"

This in response by my friend Pat to a previous post "A Play in a Series of Poems."

 heaviness, sadness, frustration,

confusion, depression, tears and at times desperation,

even if laced with love, compassion, insight, and humor

I think this describes life, and most plays too. Remember “The Outgoing Tide?” It’s all in how you tell your story. To have people pay, they want to have some empathy with or at least recognize the characters or their situations, see some change and growth, some crisis points, resolution (or not, sometimes) and in many cases, laughs are needed to relieve the deeper parts. And that’s entertainment!

(Click here to go to previous post.)

Last Night After Today

Gregory and I discussed the difficult day we/he had. He was calm again and I was able to say, "Well, tomorrow we'll begin again." I found myself thinking not the sad or difficult or hopeless thoughts that often follow bad days but rather ... "I'll try to do better again tomorrow." This was a sign of growth in my thinking. Then today this came across from Abraham: 

Daily Word

About Daily Word | Pray | Affirmations | Articles | Search Archives | Subscribe | Shop | Donate Tuesday, January 10, 2012 TRANSITION I move forward through change. While change is inevitable, my response or reaction to change is up to me. How can I best prepare myself for change, and how can I make the most of it? Change is a transition from one thing, one place, one state of mind to another. I am evolving from what was to what is. I am becoming more than I was before. Just as my view changed as I transitioned from childhood to adulthood, I now see that I am gaining a new perspective during this transition. I may be stepping into unfamiliar territory, but this step is an opportunity to grow in spiritual awareness. With each shift or change in my life, I am moving forward. When I was a child, I spoke like a child, I thought like a child ...; when I became an adult, I put an end to childish ways.--1 Corinthians 13:11