A Recent Memory E-Mail

Dear Michael,

I'm not sure you will remember me, BUT... Gary and I were your guests for dinner one wonderful evening years ago. We were Greg's clients.  Strange, but I have been thinking about both of you lately.  So much so that I just searched Greg on my computer. 

Imagine my surprise and sadness when I read that he passed away only weeks ago.  I am so so sorry for your loss. He was such a gentleman, incredibly talented and delightful.  

May all of your beautiful memories be a source of comfort. Please know that we share your grief. We will certainly make a donation on Greg's behalf.

Take care,
Meryl

• • •

Meryl,

Of course I remember you and Gary. Interesting that he was on your mind. We closed the business in 2005, a year or two after he was diagnosed with Young Onset Alzheimer’s Disease. 

We closed the firm so we could travel the world, enjoy our life, and live to the fullest with the diagnosis. We decided we could lie down and die or hunker down and keep going. 

We lived well for ten years even though the disease created for both of us, new challenges and ways for living. In January of 2013, his condition got to the point that I could no longer provide for his needs at home.

He moved into the Liberman Center in Skokie where he received great care. Even though greatly diminished, Gregory continued to enjoy life, be grateful for what he had; was patient, kind, considerate, and compassionate.

I continued to visit him every day and found that as I was able to step into his world, I loved him just as much, if not more, than the first day I met him 40+ years ago. 

Thank you for your kind words and the contribution is appreciated.

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.

Widow, The Term "Dead," and The Grief of Others

It seems the "Gay" thing to be a "Widow" instead of a "Widower." But that is just me:-) This realization shocked me. I knew (and hoped) that Gregory would die before I did, if only because of the odds set up by his Dementia/ Alzheimer's. But never thought that would mean that I would get a new title. "Widow."

In some ways I do not need or want to hold on to that label. I am just me. Michael. Whose life long partner, Gregory, person I loved more than life and still do, has died. And now I go on to decide who I am without a partner to accompany me through life. Title, label not necessary.

I am pretty well "defined" if only because Gregory and I lived, grew, and loved on parallel tracks that converged more often than not. We had our own unique interests, our own unique activities, and our own unique friends and those interests, activities, and friends crossed over often and we enjoyed learning from each other and experiencing life through each other's eyes. But none-the-less, I am still needing to redefine myself, yet again, now that Gregory has died.

I wrote a "kitty story" about one of our pets who died many years ago. It ends with and the title is: "My Kitty is a Memory Now." It is still painful as I continue to get used to saying and realizing that Gregory is dead. I prefer that to "passed," or "left us," or "gone," or "is an angel now." While those comments might make Gregory's death easier to talk about, the use of the word death, died, dead ... helps make the reality of the situation easier for me to learn to live with.

Based on a post from my friend Pat, who was one of Gregory's champions and who visited him very often, always to Gregory's delight, I realized that I am not the only one who is grieving his death. Click here to see "Pat Remembers Part 1" and Pat Remembers Part 2 (Both open in a new window.)

The following can be said by many people about Gregory's death:
     "I have a good friend who recently died."
     "I have a loving uncle who recently died."
     "I have a dear great uncle who recently died."
     "I have a brother who recently died."
     "I have a brother-in-law who recently died."
     "I have a colleague who recently died."
     "I have a good neighbor who recently died."
     "I have a wonderful college chum who recently died."

I was so wrapped up in my own grief, in planning for Gregory's cremation and his memorial at the condo and the one at the Lieberman Center, that I didn't stop to think how many other people would people would be grieving Gregory's death. He was loved by so many people. When a person dies, you get to hear about how they touched so many people's lives and so it is with Gregory. He will live on for a long, long time in the minds, and hearts, and memories of many.

Pat Remembers

This was taken from Pat's Facebook page.

I never knew Gregory “before.” When I met him, his Alzheimer’s had progressed significantly, but was often not evident to a casual observer. We’d go for long walks, and visit the bird shelter to hug a big parrot. He had an art show. When we ate at restaurants, he needed help ordering.

As time passed, he needed help zippering his jacket, putting on his gloves, and pouring his Perrier into his glass. When I offered to do these things, he was always grateful. Through all this, he was patient with himself, and handled his confusion with grace and dignity, at least in front of me. 

Moreover, he never lost his manners, like standing aside for me to go through doorways first (although I felt he should go first, so I could watch over him.) Alzheimer’s stole a lot from him but he remained responsive and gentle and agreeable with me. 

While I do not begrudge him the relief of his death, I regret that I no longer have him as a model. We must remember these things in our hearts and continue to be the better person our friends inspire us to be.

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Michael Horvich That's why I love you. You and Gregory instantly bonded and you were always gracious but not condescending to him. He loved you so and I swear, when you visited him at Lieberman, he was usually happier to see you than me smile emoticon I am not jealous but it made me love you all the more.

Gregory II

It is so heard to believe it all. You know it is coming but then your are surprised. The pneumonia seems to be winning and Gregory has slept all day yesterday and today. Therefore he is unable to eat or drink. His fever was high but came down as the day passed. His pulse is fast, his blood pressure low, his breathing shallow, his oxygen level (even with using oxygen) is low. His cough has calmed with the help of morphine drops under his tongue. His breathing, while labored, is even and he is not at all distressed. I wish you could see his face which is calm and at peace as an angel's. Peaceful the bear is snuggly nestled in Gregory's arms.

I called many family and friends in the area to give them a heads up and to let them know that if they wanted to say goodbye, now was the time. Not only were they devastated but so were the Lieberman administration, nurses, staff. The kitchen manager brought up a basket of fruit, water, and juices. The ladies who do laundry said their goodbyes. The managers of many departments came to give their sorrows and regards.

All the CNAs were truly sad, said their goodbyes to Gregory and gave me heartfelt hugs. Family members of other residents who heard dropped by. One resident family member brought me hot chicken soup, a sandwich, and a bottle of soda. Over the morning and afternoon hours, at least 10 friends sat with us.

The hospice rabbi, who was off today, came in anyway to sit with us. The hospice nurse as well as the Lieberman nurses were in and out of the room checking on Gregory to make sure he was comfortable. The hospice social worker went out of her way to make sure I was OK.

Manny was there as was Halina, Gregory's private care workers. The Director of Nursing called me to offer her support. I was overwhelmed by the support showered on Gregory and me at this difficult time. Together, Gregory and I took Lieberman by storm and left a great impression on all who came in contact with us. They are all grieving with me, sad for us, happy for Gregory.

I left around five and Manny left around six. Gregory was resting comfortably and the nurses would check him every half hour. If he seemed in distress they would increase his morphine. My gut told me that after a long day of people sharing their love and grief, Gregory would enjoy the peace and quiet.

I also felt that by my being there he would sense my emotions and sorrow and be hesitant to leave us. I said my goodbyes, gave Gregory permission (if he needed it) to move on to his next adventure without having to worry about me. Sure I would miss him like crazy but I didn't want him to stay on just for me. He could go when he was ready.

As soon as I know more, I will write the next post.

Tear Time

It's tear time again. Will they ever stop?

Just found out that a dear friend has been diagnosed with Dementia/ Alzheimer's. She is much older than Gregory when we received his diagnosis, and I am sorry she has to deal with this and wish her the best that can be until she decides to "go home," but it causes me to relive my sorrows of the last twelve years with Gregory and the possibilities that she and her family are just beginning to travel. So the tears.

I am honored that the family trusted me with this information and that they have enlisted my advice which I will give lovingly and freely. But I know it will bring my sorrows to the surface again as I share what I have experienced and what I believe to be true in helping my friend live as productive a life as possible. Remember, "Lie Down and Die or Hunker Down and Live!"

Utmost in my mind is the advice from my blogger friend Kate www.kateswaffer.com that one needs to continue to live as big and as loud as one can; work around the changes and not to let the diagnosis bring you down.

Happy Birthday Gerry

Gerry lives on Gregory's floor at Lieberman and is a table mate as well. She and her son Howard and his partner Robert have become part of our Lieberman Family. Gerry celebrated her 97th birthday yesterday in the park which is part of the facility.

Gregory, Manny, and I gave Gerry a very large birthday card...

... and a soft birthday bear.

The Velveteen Bear

Originally posted on my writer's blog.

The Velveteen Bear

She says that the bear doesn't hold much memory for her. It was never given a name. She was about to give up ownership, maybe take a few photos in situ, and leave it behind at the park. "Maybe someone will take it but probably, considering its condition," she said, "the park maintenance people will just toss it."

For some reason, I could not let this happen, so overwhelmed with tears I offered the bear a new home. Perhaps it is because she is such a good friend and I value this ratty bear that has been with her since her childhood, as a stand in for how much I value her. Or perhaps it is because I am generally sad that she is moving and I will miss our frequent, spontaneous get togethers.

Or perhaps I know something she does not know, especially right now as she is moving and packing and getting rid of things she doesn't want to take to the new place but I know for sure that she really values and loves this bear, whom I have named Bear.

It is so velveteenized that it would put the Rabbit to shame, even with its world renowned story. Bear has so few patches of soft fur left, when compared to its available rough meshy base, that it does take an extra something to want to hug it.

Another hint at the love that this bear holds are the numerous areas that have been over time, by a young girl and or her mother, Frankenstein stitched back together to keep it in one piece.

Further evidence of "Love of Bear," is that when she carried it into Chipotle to take a few photos over lunch, she carried it by its ear. Then she hugged it, child like, while she ordered lunch. Now if that isn't love, what is?

After lunch we went to visit Gregory at Lieberman. He took to Bear very easily. We are sure that Peaceful the Bear, Gregory's personal bear, did not take offense but rather was supportive and caring of Bear. Bears tend to be that way towards fellow bears. No questions asked and no value judgement made, appearances not important.

Maybe Bear will spend some time with me at the condo and also spend time with Gregory at Lieberman. Nice idea, huh? Then when my friend is in town, which will be fairly often since her husband teaches at Northwestern and they have a new apartment here for him, Bear can visit with his original owner when she comes to visit Gregory. She is probably one a few most loyal friends that Gregory has and now we will have Bear.

This Bear must be at least 50 years old. Most likely you have rough patches and mends too from being as old as you are, Dear Reader, and I still love you! That is why I'll bet she still loves Bear very much!

Lieberman Center Spring Carnival 2015

Michael and Gregory sponsored the carnival in honor of Michael's 70th birthday. Approximately 250 Lieberman residents, family, friends, and guests attended this gala event. Twenty five of Gregory and Michael's family and friends volunteered to run the games and refreshment counter and a dozen Lieberman and CJA volunteers helped residents move around the room.

Carousel music was playing in the background, the smell of freshly popped pop corn was in the air, over 100 colorful helium balloons decorated the community room, table top game tables were covered in gayly colored table cloths, kosher cotton candy and orange sherbet push ups were available as well as fruit punch.

Every player was a winner and could select two presents on the way out including Beanie Babies, key chains, bracelets, pens/pencils, boxes of Kleenex, bags of M&Ms, and more. A good time was had by all!

The Carnival Mascot: Peaceful Too

Sponsors Gregory and Michael

Gregory playing the "Beach Ball" game with Manny & Caroline.

Gregory playing the "Beach Ball" game.

Gregory having a great time at the Carnival.

Emily showing Gregory his photo.

Helpers Alma (5th Floor Activity Director) and Hanna (5th Floor Social Worker.)

Michael and Hannah.

Gregory and Manny (Private Care Aide, Friend, and Lifesaver!)

Larry sitting up the "Ring Toss" game.

Sharon and Michael at the "Jug Tumble" and "Duck Pond" game.

Sheryl and Sarah at the "Kissing Booth" and "Soccer Slam" games.

 Naomi at the "Luck Dice" game.

Robert at the "Clown Tumble" game.

Caroline at the "Beach Ball" game.

Cheryl at the "Ice Cream Scoop" game.

Howard at the "Fruit Match" game.

Before and After

When dealing with Alzheimer's Disease, there are many before and afters. Over the last 11+ years, I know that Gregory and I have experienced many: some good, some difficult, some ugly.

The secret to success, happiness, peace of mind, etc ... I believe ... in dealing with the disease, is being able to be in the present, seeing the person with the disease as a person NOT only as the disease.

It is not easy to do, but I find that if I tuck away the sad feelings until a later date, I can enjoy the joy of the moment and express as well as feel the love that still exists so strongly between Gregory and me.

If I spend too much time thinking about the before's or after's, I loose the precious now's.

Emotions are not bad. Emotions do not have to be "out of control!" My emotions surface as a barometer of where I am currently in my life and of how I am dealing with being alive.

So I feel that emotions are not bad, they can be helpful friends if you allow them to be. I welcome them when they surface, I thank them for the messages they bring, and I sit with them awhile even though they may make me sad and cause me to cry. Better said: As I allow them to make me sad and allow them to make me cry, and that is OK.

But then I thank them again and send them on their way so I can get back to living the joys and blessings of my life, of which there are many.

Another thing I do, if I do not have time to "sit with them awhile" is thank them, send them my love, and tell them "Not now! Please leave! Come back later when I have time to sit with you!"

It usually works for me.

This post of before and after was prompted by two photographs my friend Jan Yourist texted to me as she was helping Gregory with lunch today. Manny, Gregory's helper is on a religious retreat so I asked Jan to cover for today's lunch and I will be with him later in the afternoon, for dinner. and after to watch TV.

The before and after pictured below demonstrate how joy can be found in the present.

Jan's caption for the first photograph was: "I am hungry." Gregory looks good, is finally over his cough and cold, is able to keep his neck strongly straight, is focused, and posed for Jan's iPhone. He may not look happy but Jan interpreted it as, "I am hungry." And that is a fair interpretation.

This "after" photograph shows Gregory happy, smiling, probably chatty, stomach pleasantly full with Lieberman's delicious Kosher cooking (and it is good, I taste it often!) I do not need to add a caption as the photograph speaks for itself!

In closing, I could allow myself to be sad. I could dwell on who Gregory was in the past and who he is now. I could dwell on all he has lost and all I have lost. I could think about his being at Lieberman in his new narrow environment and me being at home in my environment which continues to grow. I could think of what lies ahead for Gregory and what lies ahead for me. While who knows what really will take place and when, most likely my outlook is better than his.

But why do that when I can choose to be happy. Happy to see this lovely photograph, glad he is well taken care of, glad he beat the recent cold, happy that we have such good friends like Jan who will take an afternoon to help out, happy. I just feel happy. The sad is still there but I thank it and tell it that right now I would rather be happy and maybe some other time I will allow myself to sit a while with sad!

This post is dedicated to Jan Yourist (click here to visit her blog) for her support as well as Corinne Peterson (click to see her site), (who hates to be called my Guru but she is) who has helped me to find peace of mind during Gregory and my journey!

Maybe Not A Saint

This was written by a dear friend and I wanted to share it with you. With the documentary crew asking probing questions during our interviews, I have had to revisit many emotions of the past. Many of which I have come to grips, others reopening new sorrows and joys. 

This note meant and still means very much to me. I do not do what I do for Gregory so I will be acknowledged or rewarded, but it does get lonely and kudos now and then do help. It was written right after Gregory went to live at the Lieberman Memory Care Facility.

Thanks PA. You know who you are!

Michael

Dear Michael,

It’s about time I tell you what I think of you. I’ve been talking about you with others, and it’s past time to say it to your face.

This is not about your sense of humor, your collections, or your creativity. It’s about your brave conduct as your partner of 35 years declined, from your soul mate to a manageable concern to a 24-hour caretaking job. This is about how your expectation of retirement companionship deteriorated to silent meals and bathroom supervision.

What I want to speak of is your unwavering love and devotion. Your resilience. Your composure, most of the time. Your acceptance, without hope. Your management of your own frustration and disappointment.

When Gregory became confused about dressing, you labeled, and later, laid out his clothes. When he couldn’t figure out how to plug in his shaver, you put arrows on the cord and the outlet. You engaged all your intelligence and creativity to help him. In private, you mourned each lost ability, a raw comparison to parents celebrating a child’s milestones.

When those accommodations failed one-by-one, (or sometimes faster,) you supervised. When supervision didn’t work, you did it. You demonstrated tremendous resilience as you devised ways to preserve whatever dignity and independence Gregory still had. You were, and are, his touchstone. You are the one he looks to for comfort, stability, and anchor.

You’ve always been open about your feelings, and never critical of my questions. Once I asked you, how long could you do this? Your response struck me and stuck with me. You said, I have the time. I don’t need to go anywhere and I can take Gregory with me if I need to run an errand. You were saying, why not care for Gregory at home indefinitely; I have the capability. I don’t think I could ever be that generous.

But one day, that wasn’t enough. One day, Gregory was not calm and compliant anymore, but agitated, unspeakably sad, and lashing out. Thanks to your preparedness, you did not panic. You found him a place to be where he is comfortable. He is calm and happy again. Nothing about you changed. Gregory changed.

         Through all of this, you also cared for your extended family and friends, by keeping us apprised, at least in broad strokes, of what to expect. You communicated your strong sense of what you need—support, acknowledgement, privacy, no need for suggestions. You never acted the martyr; just laid out the facts. You cried in your pillow at night.

I am honored that you include me in your circle, and I don’t know what I do to deserve it. I do know I need to reflect on how I can be more like you. I’ve told my children, a good friend should be someone who makes you want to be a better person.

I can only aspire to be in a relationship like the one you had with Gregory all those years. What I can do is to try to be more patient, more thoughtful, more devoted, as you have with Gregory. Because of your example, I am making an effort to make more time, take more time to think about how I can help them. Your influence improves the world.

You may not be a saint—but you may be a minor angel.

Love,

PA