Happy New Year - 2016

What a year this has been. Helping Gregory live as vital a life as possible at the Lieberman Center, even with my emergency appendectomy, even with Gregory's passage ... I am grateful. I am thankful. I am full. 

Life has given me many gifts, Gregory being the biggest, and has taken back, Gregory being the hardest to return. I look forward to a new year in which to learn how to keep Gregory in my heart and in my mind without the pain it now creates.

I look forward to seeing who I become on my own with the years I have left: the good I can do for others, the adventures I can find for myself, sharing my love and my life with friends and family. I look forward to my continuing to grow, experience, process, write, and understand is possible

Wishing you a very Happy 2016. May your life be one of love, health, financial comfort, and when possible happiness.

Update

Gregory is doing well. The aspiration in his lungs has disappeared and while he is still coughing, it is getting less and less. No fever. Good appetite. Alert. Aware. Engaged. In his own inimitable style:-)

Hospice will continue to support us at Lieberman and that means extra nurse attention, social worker attention, music therapist, etc, etc. Eligibility is reevaluated every three months and he might be kept on due to his "End Stage Alzheimer's" diagnosis (sounds worse than it is and could go on for years!)

Meanwhile we continue "The Battle of the Chairs." I think we have had ten or eleven Broda chairs in the last three months. So many variables that need to get communicated and for some reason or other do not get "sent" or "received" or "understood" or "followed through." No one at fault, not placing blame, it has just turned into a "Comedy of Errors."

Sometimes the chair seat is too wide, or too narrow, or  too short (never too long,) or it doesn't tilt back easily, or it tilts back but doesn't stay back, same for foot-rest from dysfunctional to downright broken, sometimes it is easy to push the chair other times you bounce off the walls trying to control it down the hall.

I will say that the chair provides perfect posture for Gregory's back and provides stability. I will say that it has not yet accommodated his long legs. We are getting close to a solution. You'll be the first to know (no - Gregory will be the first ;-)

The Broda in upright position with removable tray.

The Broda tilted for comfort. Showing side arm removed.

Totally tilted so person can change posture, take a nap,

or with side arm removed as shown above be changed and

cleaned up without having to be moved into bed.

Wish us well in our quest for a chair that meets all variables!

We've Named Him: Mr. Stone

On a happier note, earlier this evening Gregory passed his 3mm Kidney Stone and did so without any pain. We were both pleased and surprised to see this black mini-meteor fall into the strainer with a "clink." We were both relieved.

A Visit to the Emergency Room

Gregory is OK but last night we were in the Emergency Room from 7:00pm until 4:00am. He was diagnosed with Kidney Stones and hopefully they will pass on their own in the next few days. 

The difficulty was his lack of language and/or associations to be able to explain what he was feeling and where. He was in a lot of pain and through he was going to die. 

Also he became delirious which added to his fears (and mine.) This is the second time Delirium hit so now that I understand it, I was prepared and not as frightened. When it happens he looses all the abilities and awareness that he still has.  He becomes totally irrational. For more information on Delirium click here: Delirium: MedlinePlus Medical Encyclopedia

With the help of a neighbor we got him to the car and I drove him to the hospital. I didn't want to use an ambulance with sirens screaming etc, to add to his confusion.

Once the pain subsided he did better and the ER experience, while with supportive staff, was just boring and long. On a kind note, the hospital keeps feel for family while they are waiting. I had a turkey & cheese on whole wheat sandwich, cranberry juice, and a package of Lorna Dune cookies. 

We slept in this morning and he is much more aware and feeling fine, just a little "beat up."

I'm keeping an eye on his urine, we have Vicodin in case he is in pain again as the stone moves out.

So all is well, but wanted you to know,

Love ya,

Michael

P.S. I couldn't help but think about my sister, brother-in-law, nieces, and nephews who spent many a rushed visit to ER with mom.

Meditation Class 7

Missed last week's class but will listen to the MP3 when I can. I had to struggle with the choice of "skipping" another week if only because of so much going on during the holiday season, I just didn't want to face the "work" of calming down enough to go through 40 or so minutes of intense mindful meditation.

But I went anyway and am glad I did. Even after missing a week, I was able to meditate deeply, although amid a whirlwind of competing images and thoughts. I was able to notice them, say "Not now," and tune back into Corinne's soothing guidance.

This week in my Nidra Yoga Meditation class we concentrated on beliefs. My intent was to focus on my weight. My heartfelt desire I labeled HEALTH. The idea is that my weight is at such a point that I am uncomfortable, do not like the way my clothes fit, do not like the way I look, find my energy lacking, sometimes have difficulty with being out of breath, tire easily, and generally do not feel that I am being as good to my body and HEALTH as I should be.

It is easy to slip into getting used to being where one currently is and coping with the existing conditions. They become internalized and become part of who you think are as opposed to what your true nature is. When you get used to the difficulties in moving around, bending, lifting, breathing, etc; you accept that as the norm.

Eventually one has spent so much time thinking that the norm is the truth that you need to spend at least that amount of time undoing the norm and rediscovering your truth and honestly, that feel hopeless. Easier to accept what is rather than change or revise.

So in our meditation, when Corinne asked us to look at our beliefs about our intent and heartfelt desire, I have to admit that my little voice said to me, "You really don't believe you can do this, do you?" And the honest answer was, "No, I don't! I know that I must take control of this situation, I know how to do so by eating well and exercising, I just don't believe that I can or will so it is easier just to have another cookie or piece of pizza."

Next week we will continue to look at beliefs as a way of bracketing the New Year. Kind of like my New Year's Resolution, stated in positive terms as though already realized:

I am healthy. I exercise regularly. I choose healthy foods and avoid sugar, white flour, and fried foods. I do not eat to "keep my child happy." I eat slowly and with relish and know when I have eaten enough. I am energetic and breath easily even on heavy tasks. My clothes fit well and I look good to myself in the mirror. I know I will never have the body of a 20 year old again but at least with my clothes on, I look good!

An interesting aside is that during the entire meditation Gregory did not exist. He was sitting downstairs reading a book, his companion had called in sick so I took him along, I knew he was busy and safe.

Upstairs I was meditating on issues that only had to do with ME! I thought of him once during the meditation but told myself he was OK and asked those thoughts to go away for now, which they did.

Often my heartfelt desires dealt with my being able to be patient with Gregory, and understanding, and successful as a caregiver etc. This was the first time I worked on only me, right from the beginning of the meditation.

Every now and then a "blessing" or "gift" arrives in your life. Corinne Peterson has been that for me. Arriving at just the time I needed to be able to find a peaceful place, outside my active and stressful days, away from the noise of my mind.

I had read a lot about the process and the need of meditation and I had thought I could just lock myself in the dark closet and "do it!" I never succeeded let along begun.

When Sarah McLaughlin, my massage therapist, introduced me to Corinne, my path was made clear. Thanks to both Sarah and Corinne for being part of my life.

I am taking this class at the Heartwood Center in Evanston with Corinne Peterson.
http://www.corinnepeterson.com/yoga-therapy/

Forks Over Knives

Interesting. We have been spontaneously "gravitating" towards more veggies, grains, and fruits and away from red meat, pork, and poultry. Not sure that we will ever be able to totally do away with "Food With Faces" but have cut way back.

This has helped me as well as Gregory. He has always eaten "healthy" and I attribute some of his slow decline to this. I have been eating more carefully over the last ten years or so and recently joined Weight Watchers to get down to my fighting weight.

Watched a great movie (on DVD) that deals with a move to vegetables and fruit and grains called "Forks Over Knives" by T. Colin Campbell, PhD and Caldwell B. Esselstyn, Jr. MD. (There is a companion book on Amazon.)

I need to make sure I am healthy and around for a long time to be able to be Gregory's Care Giving Partner. Thanks Zeyda.

What if IT happened to me?

Of course dementia can happen to anyone so yes I have thought about it. I am not sure that there is anything I could do to "prevent" it in addition to what I already do to live a healthy, active, productive life.


I have prepared our finances in a way that the next in line trustee would take control of Gregory and my personal and medical lives and decisions if I couldn't whether due to a form of dementia or something like a stroke or heart attack. 


If I began to feel dementia creeping in I hope I would recognize it, as least in the early stages, and take action. We have a large enough support group that someone would let me know if they thought I needed a "look see."


It would be very important to me then, as we did in the past for Gregory, to control all those things I can and provide for the future of those which I may not be able. Never easy but as I have written before, can't spend (waste) too much time anticipating what MIGHT be at the risk of missing the wonderful that still is.

Expectations Are What You Expect Them To Be

When you love someone, nothing is impossible. While I am spiritual and NOT religious, I do like the quote from 1 Corinthians 13:7 "Love bears all things, believes all things, hopes all things, endures all things."

I first suspected that Gregory was having problems long before he was aware of them. Eventually we had the doctor run a number of tests (with Gregory's permission.) When we got the verdict of Alzheimer's we were almost relieved because now we understood what he had been going through and why, as well as what we could do to get on with our life.

As Gregory lost abilities, I learned to compensate. As the rules changed, I was able to figure out what the new ones were. As it became evident that there were no rules, I learned to "roll with the punches." I knew that I had to change my behavior, because he couldn't change his.

I cannot say that I ever had expectations (advance ideas) about what caregiving would entail. I just adjusted as it was needed. I chose not to think too much about what future caregiving might bring as I would rather live for today. That does not mean I don't study up on what I might expect to happen but when it gets too depressing, I put the books down.

As we needed to accomodate we accommodated. As our roles needed to change, they changed. I am fortunate that Gregory has always been so good natured and content and calm and that he has been able to hold on to those attributes even as his abilities continued and continue to dessert him. He defers to me, he trust me, he loves me and I love him.

So my expectations are only that I will continue to grow into being the best caregiver I can be, I will make sure I take care of my own health and mental well being, and I will strive to keep Gregory safe, happy, and involved, I will make the right decisions when I need to make them.

Alert 1

Well, I've done it. "I've fallen and I can't get up." Read on...

As I have aged, I realize that I pass milestones that place me in my parent's generation. Over the years I would hear them talk about various conditions, changes, ways of looking at things and either I would hear them but not listen or I would write it off to "my parents being my parents." Now I understand.

Like my parents, we've moved to a condo and enjoy not having to maintain the house and grounds. We nap. We like to be at home at night and snuggle in. At restaurants we sometimes share entrees. Entertaining takes a toll so we do it easier or do it less. Pills are organized into our "S M T W T F S" boxes, white for day and blue for night. We do not eat too late at night. Pardon me ... but if we do not move our bowels we are aware of it. And so on...

Dealing with Gregory's Alzheimer's diagnosis has presented many other age related problems with which I have had no experience. But I am learning. For example, this week I ordered a Medical Alert System for the condo. If something was to happen to me (heart attack, crack on the head, broken hip) I am not sure that Gregory would be able to deal with the situation. When he is under stress, he temporarily looses even more of his abilities and I can picture myself laying on the floor trying to give him instructions or worse yet, passed out unable to give him instructions.

So now we have a large white box on my bedroom nightstand with its very loud speaker and bring red button (which lights up) marked EMERGENCY! I have a fob that I can wear around my neck that also has a red emergency button and I have a watchband button as well. Both activate the big box in the bedroom. I haven't taken to wearing the remote buttons when I am at home yet but probably need to get into the habit.

When I tested the system, within a minute of pressing the button someone came on the speaker box and asked (to be heard all through the condo unit) "Are you alright?"

I answered, "Yes I am testing the system."

"Am I speaking to Michael?" (On their records because I am listed as the "primary user."

"Yes."

"Is Gregory alright also?"

"Yes."

"We will mark this as a test of the system. Remember when ever you need help call us by pressing your emergency button. Thanks for using Alert 1."

Last night as I was drifting off I was musing about the service. Peace of mind is good.= but they forgot to ask about Mariah, our cat.

Caregiver Affirmations

This is taken from the "Fearless Caregiver Newsletter," Thursday, November 18, 2010, Issue #8, www.caregiver.com and was written by "Joe in Illinois."

Caregiver Affirmations

I forgive myself and others, I live in trust for the future and I embrace this moment in life.

I take time to cherish myself, to enjoy life and to accept the support and company of others.

I accept the mystery of life and suffering; I know that the important gift I give is my healing love, and caring, listening presence.

I eat well, I exercise, I get enough sleep and I speak kindly to myself.

I keep a sense of humor and life life in gratefulness for all the small gifts of life, and I am open to my source of power beyond myself.

I set limits with people and make my own needs and feelings known to others.

I am a wonderful source of healing for those that I care for because I first love and care for myself.

Yom Kippur

Break the fast: gefilte fish, chicken soup w/ matzo ball, brisket w/gravy, kishka, peas, Mogen Davis concord grape wine, kugle for dessert.

Our prayer for the new year, "It only shouldn't get too much worse."

May you be sealed in the Book of LIfe for Love, Health, and Joy.