Testimony: Part II

In a post dated February 25, 2014, I talked about the futility of worrying and that "working at not worrying" depleted one's energy as well and served no purpose.

http://mhorvichcares.blogspot.com/2014/02/a-testamony.html

The post began with: This post is a testimony to NOT worrying about the future. I know that one has to experience on their own to learn lessons, telling doesn't help all that much, but maybe a few words from my experience might help you.'

And now, Gregory did it again. With his passing on October 4, 2015 at 12:00 noon, he jump skipped over many of the "possible scenarios" that could have been, that could have caused worrying, that could have caused me to spin and spend my energy erroneously and unnecessarily.

I do believe that I did a better job of not worrying (or working at not worrying) than I have done in the past. I would recognize my feelings of worry, acknowledge them, and quickly release them; having faith in myself, in Gregory, and in the universe that order would prevail and both Gregory and I would be able to deal, cope, and live with any situation.

So many of the things that cold have happened, that I read about might happen, that has happened to others; NEVER HAPPENED to Gregory or me. I will add, however, that what ever might have came in the future, Gregory and I would have gotten through it gracefully. Without worry. Only love.

Gregory never forgot who I was. During his last month, his level of acknowledgment or joy at seeing me (or any visitor for that matter) was not as energetic as it had been but none-the-less he always was happy to see me (and visitors.)

Gregory continued to give me kisses, to enjoy his chocolates, to hold and munch on his pretzel stick, to sip his juice from the foil bag container, to sigh when you massaged his back, to squeeze your hand when you squeezed his.

He continued to enjoy his meals; hamburgers, skirt steak, chicken, lox and bagels,  sandwiches, stew, cereal, omelettes etc, etc. He never needed "mechanical," which is food chopped to facilitate eating and while delicious amounts to "piles" of food and limited choices. He never needed to move to "puree," which is food reduced in a blender with thickener added and then baked in moose like loafs, which amounts to a green custardy like square (green beans,) a white custardy like square (potatoes,) and a brown custardy like square (beef.)

I will say, to Lieberman's credit, that all of the food was tasty and of the same quality. The marinated, roasted chicken breast that Gregory enjoyed was the same one that was chopped up or pureed. I know because I tasted all levels of that chicken breast and all were tasty!

Gregory always loved his music on the earphones or on the speakers in his room, his "South Pacific" DVD which we must have watched 100 times, going down to the community room for the Sunday concerts. He enjoyed playing rhythm band with the instruments I brought in, dancing (arm and body movement in his wheel chair) to Abba, singing, and whistling.

He never became comatose, totally unresponsive (except for the four days he was preparing to leave us,) angry, fearful, confused, frustrated (in part due to the loving care from Manny and the Lieberman staff and in part due to the carefully monitored, minimally dosed Risperdal which was prescribed by joint decision of the doctors, nurses, and me. I know that the use of antipsychotic drugs is very controversial but in Gregory's case they served a good purpose.

His skin help up beautifully even though he "lived" in his wheel chair all of the time except when he went to bed, even though he had to shit an pee himself as a way of going to the bathroom and sometimes had to sit in it until an aide could get to change him. In the beginning, he hated soiling himself and would grab his penis as if trying to hold it in. I would tell him, "It's OK. I know you hate this but just do it. They will clean you up all fresh. Just let it rip!"Eventually he just released what he had to without a care. As the children's books says, "Everybody poops, you know!"

He always kept his sense of humor, his sense of empathy for others, his patience, and his compassion. He always had a smile, an arched eyebrow, a laugh. He loved doing his accent correct imitations, although with nonsense language, of a French man, a Russian man, a Jewish man, a developmentally disabled person, a child.

His unexpected death (I had anticipated another two or three years at Lieberman with a continued downhill trend) allowed Gregory to skip over most of the difficulties inherent in a death caused by Dementia/Alzheimer's. 

So if I had worried a lot, that would have been a waste of my energy and would have diminished the time I was able to spend with him; being happy, being content, being good to myself and therefore being better able to be good to him.

As I said in my previous post about life in general: In the end, what is there to worry about? When you have seen death approach and leave with your parents, when death has also taken friends and relatives and pets, as death slowly but surely took away the person you most love in the world, and when you accept that eventually death will come to for you ... fear looses its edge. Nothing to worry about. Be happy! 

Kate

Extremely moving post by friend Kate:

http://kateswaffer.com/2015/09/06/women-families-and-dementia-dam2015-day-6/#respond

Here is my reply:

Kate,

Often people will say, "I know exactly what you mean!" and it rings so false and so placating. However, again with tears blurring my view, I know so well almost everything you have discussed in this post. In some ways nothing I can say will lessen the impact and intense sadness you discuss.

Changes in relationships, socialization,  sex, movies, TV etc are the easy ones to overcome. Being the one who could still change while the other can no longer, is somewhat less easy but still OK. The slow disappearance of the person you love most in the world is the painful one.

For a long time I softened the concept of "carer" by calling Gregory and me a "Caregiving Team." I used to say to others (not expressing but feeling anger) I WASN'T a caregiver; I was a partner, a friend, a soul-mate, a lover, a spouse - and caring is what you do when you love someone.

While sometimes it was hard to separate the anger from its cause, I always knew it wasn't with Gregory that I was angry.

Fear? Yes. Worry? Yes. My own frustration and confusion? Yes.

Eventually I did become the care giver and now with the Lieberman Center Memory Care Facility in the picture I have become the secondary caregiver but I have won back quality, wonderful time together with Gregory.

It has been a difficult journey but I chose freely to walk beside Gregory on his path and somehow the love wins out, gives extra strength, helps us find the way, stifles the fear and worry, and keeps us going for those we love. It has for Gregory and I as it will for you and BUB and your family.

Fondly,
Michael

My blogger friend Kate's husband was quoted recently on her blog Click to see Kate's Blog (opens in a new window)

Worrying is part of the territory… But don’t take your worry away,              by taking their life away.
  (Peter Watt, 2015)

My reply follows: Wow Kate. You tell it like it is and you are on target. I would let Gregory go on walks alone. People would ask, "Don't you worry about him getting lost." And I would reply, "Of course, I worry. I love him don't I?" 

But my resolve was to let him go on his walks until one day he was brought home, lost, by the police. I also had "mapping" put on his cell phone (like parents can do for their teens) and always made sure before he left that it was in his pocket and turned on. 

On the other hand, he and I decided together that he would stop driving because that would endanger no only him but others. And besides we love being together so much and I never minded being the "designated driver" like he used to do for me when we went to parties and I got to drink:-) He never took "giving up driving" as a loss of his masculinity as so many men do. 

In the long run, Gregory's decline, when well into the tenth year after his diagnosis, was so dramatic during the last year, then the last month, then the last week ... that many of the things I worried about never happened. That convinced me that worrying is not worth the energy. TRYING to not worry expends unnecessary energy as well.  

Do what you can in preparation for the future, research your alternatives, act intelligently and wisely ... but do not worry. Serves no purpose.

Instead of "worrying" Gregory and I decided to put our faith in knowing that we would know what to do when the time came. And we did, and even though we would not have ordered it this way, things are turning out well.

Danger

I have addressed this in several ways but here is one more. Again worry about those things you can change, not the ones you cannot.

A Testamony

This post is a testimony to NOT worrying about the future. I know that one has to experience on their own to learn lessons, telling doesn't help all that much, but maybe a few words might help you.

As Gregory's Alzheimer's progressed I spent a lot of energy not worrying about the future, trying to not worry about the future, trying to not worry about not being able to not worry about the future, and of course ... worrying about the future.

I did a pretty good job of not worrying and living in the here and now but boy, in looking back, it was really worthless and a waste of energy worrying about the future because now that the future is the present, it isn't at all like I imagined it would be and in some ways not as bad!

First of all living in one's imagination is always worse than living in reality, no matter how bad reality may be. The imagination fires the unknown, the extremes, and at times the creative vs the real pain and suffering that might be (might have been or is.)

Gregory declined so rapidly during the month of December and January that the future was on us before I knew it. His anger and violence - here. His incontinence - here. His not sleeping at night - here. His not knowing who I am - here. His not being able to eat by himself - here. His not being able to dress or undress himself - here.

Almost overnight all the difficult signs of Alzheimer's that I had been trying not to worry about were here - worrying or not. The small amount of worrying that I did, didn't help, the future was here anyway. Prepare for the future? Yes. Ask questions about the future? Yes. Learn about what the future might bring? Yes, as long as it doesn't depress you too much. But worry - WASTE OF ENERGY.

It will get a lot worse too, but I am not worrying about that because Gregory is being well taken care of at The Lieberman Center. Will it be difficult for me to watch him get worse and worse? Of course. Will I cry when I think of how much I miss what he used to be and what we used to be together? Of course. But worry? No more.

Because I was able to take care of myself, be alert, educate myself, avoid too much worry, avoid too much depression, etc I have been able, proactively, to provide a situation for Gregory in which he will receive the best possible care for the rest of his life.

It feels good to have no worries. For sure I know they will not help. But I can continue to love this man and provide for him as needed, and visit almost every day as long as it makes a difference to him (and to me.)

When I got the call that he had fallen on his knees on the first night at Lieberman I didn't worry. When I got the call that he had fallen out of bed, cut a two inch gash in his head and given himself a shiner, and was on his way to the emergency room; I didn't worry. A week later, when I got the call that he was again on his way to ER, this time having suffered a Grand Mal Seizure, I didn't worry.

I regrouped, got dressed and met him at the ER, held his hand and cooed "I know" over and over. Loved him even more. Felt bad that he was hurting. Wished that I could make it all go away ... but guess what ... I was OK and I didn't worry about the moment (he was being well taken care of,) I didn't worry about the future (I accept that it will continue to get worse,) and I didnt' worry about how I would take care of him (I now had a team of dozens and dozens of people helping me make the best possible decisions for Gregory.)

I only had to be strong for him and myself, make sure that the hospital staff clearly understood that Gregory and I are not afraid of death, had discussed that, and wanted NO heroics, NO chest pounding, etc. I always ended by making sure they knew, "If he is dying, hold his hand ... NOTHING MORE."

In the end, what is there to worry about? When you have seen death approach and leave with your parents, with your friends, as it slowly but surely takes away the person you most love in the world, and when you accept that eventually death will come to get you ... fear looses its edge. Nothing to worry about. Be happy!