FOR GREGORY. He was not a VICTIM of ALZHEIMER'S DISEASE, he was a HERO!

PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Showing posts with label Parents. Show all posts
Showing posts with label Parents. Show all posts

Saturday, December 12, 2015

Perspective Changes

Interesting how one's perceptions of life change when an important person in one's life dies.

When my mom and dad died, I wrestled with how someone could be here today and gone tomorrow. Wondered where that energy went. Wonder where our time together went from my being a child, to a teenager, to a young adult, to a full grown adult (if one ever becomes full grown.)

I missed them. I grieved not only their death but what I considered the missed opportunities for parent/son relationships and how different it could have been if they were different, if I was different. 

Acknowledged that I was grateful for many opportunities they did provide and for the love that existed. Acknowledged that they did the best job of parenting that they could and that I did the best job of "offspringing" that I could.

Now, with Gregory's passing, my perceptions of time have been shifting and the shift has caused me to do some deeper thinking.

Gregory and I lived, and we worked at living well for twelve years, with his diagnosis of Dementia/Alzheimer's. At times our life felt normal and at times we also felt like we were living on a roller coaster as his needs confounded, our interactions became surreal, his abilities failed and resurfaced only to finally fail again.

Now when I think about those twelve years, it feels like minutes. At the time it felt like forever, but now that the confusion, frustration, anger, sorrow, fear, etc no longer exists, it feels like moments.

Gregory spent the last 18 months of his life at the Lieberman Center for Health and Rehabilitation on the Alzheimer's Special Care Unit. At the time it was a day in and day out activity. Grateful to Manny for providing not only care and safety for Gregory but also for the love, socialization, and life enrichment he provided on a day to day basis.

When Gregory's health needed extra attention or his medications needed rebalancing or when his difficult behaviors needed a look see; my life would feel topsy turvy. But once the Lieberman nurses, doctors, hospice care, and I did our problem solving; things settled down for both Gregory and me.

Now, with Gregory on his next adventure, without my daily visits, and the Care Conferences, and the monitoring of his daily needs and treatment;  it feels like Lieberman was but a breath.

During the three days it took Gregory to die, I saved many vivid, sometimes difficult and sometimes joyful, memories of the process. None-the-less it feels like those three days were shrouded by a certain numbness. 

The planning of two tributes for Gregory was easy. Gregory's Memorial at the condo (attended by over 100 family and friends) was gratifying and consoling as was the Lieberman Memorial to thank them for their care and support (attended by over 150 staff, residents, and families at Lieberman the following week.)

Now, when I think of Gregory, it feels like his dying was but an instant and at the same time that he has always been dead, when if fact it is just over two months since he died. Strange feeling - ALWAYS been dead.

The thoughts which next occupy my mind then ... based on Gregory and my twelve years seeming like a moment, and his Lieberman stay feeling like a breath, and his death feeling like not only an instant but also forever ... are that my life, now, will last just a few moments longer with the lesson being that I must live each day to its fullest doing things that matter to me, spreading joy and love whenever I can, and doing the best I can without being too unforgiving of myself and my weaknesses and being forgiving of others. 

• • •

In this thinking and these awarenesses, I focus on the buddhist teachings which explain that our suffering is based on permanent attachment to things which are ever changing. Nothing is permanent. 


Thus early Buddhism declares that in this world there is nothing that is fixed and permanent. Every thing is subject to change and alteration. "Decay is inherent in all component things," declared the Buddha and his followers accepted that existence was a flux, and a continuous becoming.

According to the teachings of the Buddha, life is comparable to a river. It is a progressive moment, a successive series of different moments, joining  together to give the impression of one continuous flow. It moves from cause to cause, effect to effect, one point to another, one state of existence to another, giving an outward impression that it is one continuous and unified movement, where as in reality it is not. The river of yesterday is not the same as the river of today. The river of this moment is not going to be the same as the river of the next moment. So does life. It changes continuously, becomes something or the other from moment to moment.

Take for example the life of an individual. It is a fallacy to believe that a person would remain the same person during his entire life time. He changes every moment. He actually lives and dies but for a moment, or lives and dies moment by moment, as each moment leads to the next. A person is what he is in the context of the time in which he exists. It is an illusion to believe that the person you have seen just now is the same as the person you are just now seeing or the person whom you are seeing now will be the same as the person you will see after a few moments. 

Even from a scientific point of view this is true. We know cell divisions take place in each living being continuously. Old cells in our bodies die and yield place continuously to the new ones that are forming. Like the waves in a sea, every moment, many thoughts arise and die in each individual . Psychologically and physically he is never the same all the time. Technically speaking, no individual is ever composed of the same amount of energy. Mental stuff and cellular material all the time. He is subject to change and the change is a continuous movement.

Impermanence and change are thus the undeniable truths of our existence. What is real is the existing moment, the present that is a product of the past, or a result of the previous causes and actions. Because of ignorance, an ordinary mind conceives them all to be part of one continuous reality. But in truth they are not.

The various stages in the life of a man, the childhood, the adulthood, the old age are not the same at any given time. The child is not the same when he grows up and becomes a young man, nor when the latter turns into an old man. The seed is not the tree, though it produces the tree, and the fruit is also not the tree, though it is produced by the tree.

Taken from: 

Friday, February 13, 2015

Reply from a Reader

Hi,

I saw your post regarding the Best Friends video from DailyOm.  I know you don't know me and I'm sure you have plenty of support but a book that really helped me during my mother's illness was "Making Rounds with Oscar."  I've shared it with several people suffering the terribly devastating disease that is Alzheimers.  It is a tender story about how some of us have walked the hard road of this disease.

I also read a little bit on your blog about end of life and the difficult decision to let a body shutdown and when is the quality of life gone and here's what I've learned.  After 51 years of marriage, my mother passed away last February two weeks after their anniversary. My father had cared for her in her dementia for longer than I even know. I would say the quality was probably gone the last four weeks.  The last two break my heart thinking about them even now.

This past summer, my formerly vibrant father was diagnosed and then treated for severe blockages in four vessels in his heart.  He went home twice after the surgery but he never recovered.  The third time we went home, it was on hospice.  That was late August.  I stayed with him every day.  He was chair-bound.  A once shy and very proud gentleman, he needed help with everything except eating. He never complained, was rarely cranky, and always said "thank you" for the even the smallest things.

I asked myself many times over those last months why was he suffering and where was the quality of his life.  And very near the end when I was grappling with what I couldn't possibly control, he awoke after almost a full day of unconsciousness and stretched like a sleepy little boy.  I wouldn't have missed that stretch for anything in the world...and then he ate a big breakfast. And so, though the coming days were hard, I thought to myself, "there's still quality."  Still a connection.

I am not a proponent of some of the heroic things we try to do to save the people we love or the things the medical world throws to us as treatment.  I think you have to weigh comfort over 'to what end?' but, I believe, without question, there's a plan and a path.  I think my father lived exactly the time I needed, my sister needed, our families needed, to transition us to our life without him.  He passed away on December 9th, 2014.  Tomorrow would have been Mother and Daddy's 52nd wedding anniversary.

I tell you this because I see the love in your eyes for your sweet babboo.  I don't know what it is to lose the love of your life but I know what it is to lose someone I love...two people in a very short time.  I know what it is to bear slightly more than you think you can bear.  I know what it is to be a primary caregiver and be sad and angry and exhausted and just want something so simple, it is silly.

I just wanted you to know your comment and your blog touched me.  I wish you peace on your journey and enough strength to enjoy the good moments and endure the hard ones.

I don't know what your faith is or is not but I'm going to hold a good thought for both of you and I wish you continued love on Valentine's Day and beyond.

NL