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.

Sunday, April 26, 2015

Letting Go Part 2

And then this shows up in the Daily OM inspiration e-mail:

April 26, 2015
Letting the Curves Take You
by Madisyn Taylor

The answer to control is practicing surrender.

Trying to maintain control in this life is a bit like trying to maintain control on a roller coaster. The ride has its own logic and is going to go its own way, regardless of how tightly you grip the bar. There is a thrill and a power in simply surrendering to the ride and fully feeling the ups and downs of it, letting the curves take you rather than fighting them. When you fight the ride, resisting what’s happening at every turn, your whole being becomes tense and anxiety is your close companion. When you go with the ride, accepting what you cannot control, freedom and joy will inevitably arise.

As with so many seemingly simple things in life, it is not always easy to let go, even of the things we know we can’t control. Most of us feel a great discomfort with the givens of this life, one of which is the fact that much of the time we have no control over what happens. Sometimes this awareness comes only when we have a stark encounter with this fact, and all our attempts to be in control are revealed to be unnecessary burdens. We can also cultivate this awareness in ourselves gently, by simply making surrender a daily practice. At the end of our meditation, we might bow, saying, “I surrender to this life.” This simple mantra can be repeated as necessary throughout the day, when we find ourselves metaphorically gripping the safety bar.

We can give in to our fear and anxiety, or we can surrender to this great mystery with courage. When we see people on a roller coaster, we see that there are those with their faces tight with fear and then there are those that smile broadly, with their hands in the air, carried through the ride on a wave of freedom and joy. This powerful image reminds us that often the only control we have is choosing how we are going to respond to the ride.

Letting go

Thanks Daily OM, you did it again. As I have been dealing with Gregory's illness and getting Hospice in place my horoscope shows up to reinforce (in my eyes) my decision and to calm my emotions. While letting go of Gregory is emotionally painful, I know that intellectually it is the right decision and that wanting him to be with me, at any cost, is only being selfish. When you love, you know you need to let go. I hope that Gregory is able to stay with me a while longer and know that it will be his decision when to leave, but I do not want him to suffer or disappear into a state of nonexistence without death if possible. Time will tell.

April 26, 2015
Ease of Letting Go
Aries Daily HoroscopeYou could take things much more easily today, which may be because you feel like going with the flow. It might be that you are able to accept things in life as they are – perhaps because you know that the universe is taking care of you. Expressing your appreciation to the universe for everything that you have could make you feel an even greater sense of ease today. As you look around your life, you may want to assess what it is that you have. If you can think not only in material terms, but also in terms of the other gifts you have been given – family, friends, talents, dreams – you may see that there is nothing you really lack in your life. Understanding that you have everything and that the universe will always take care of you may help you to see that being grateful is a powerful way to let go of your struggles and simply reside in the abundance that defines your life.

When we learn to let go of our effort to have everything in our lives, we will realize that we already possess all that we need. Being able to release these desires lets us go along with the things that happen in our lives; instead of feeling that we need to hold on to a specific plan or thing, we allow ourselves to exist freely and unencumbered. By appreciating the bounty you have today, your life will be effortless and harmonious.

Saturday, April 25, 2015

Clearer by Day

Last night after the call from Gregory's private nurse about his continued coughing and possible aspiration, I reaffirmed my decision of "No Heroics," if he is dying just hold his hand. Both Gregory and I had talked about this previously and often.

But afterwards I was left alone in the condo with my sorrow, my fears, my wondering what the future would bring. Usually I am able to keep those emotions under control and allow them to surface for brief periods of time. But last night I lost sleep and until the light of day shed a new look at life, I slept little.

Visiting Gregory today was up-lifting. He was still coughing and sounded sinusy but he was in a good mood, was not uncomfortable, laughed a lot, and sang along with me to "When You're Smiling."

When the Hospice nurse came in I introduced her to Gregory as a special nurse to make sure he stayed healthy. He was so communicative and correctly answered "Yes" to all the questions I posed to him like, "Are you feeling OK?" "Are you happy." "Is your chest feeling better?" Then I switched, not knowing where we would go, and said, "Are you feeling terrible?" And after four or five "Yeses" he correctly answered, "No." Both the nurse and I were pleased and amazed!

The Hospice nurse was wonderful, examined Gregory, and finished up the paperwork. She believes, for what it is worth, that Gregory does not have Alzheimer's but rather the form of dementia called Fontal Lobal Dementia. It presents itself differently than Alzheimer's and while in some ways it is all the same in the long run, I had myself often though the same. It felt good to be validated in my thinking.

So I feel empowered knowing that for now Hospice is in place in case Gregory's aspiration turns to Pneumonia, that they will be ready to help keep him comfortable whether he decides to stay with us or to leave us behind, that minimally he will have an additional nurse to look after him, and by the "Light of Day," I am feeling relieved and better.

Hospice Care

Gregory has a bad cough and cold again. It is the third in less than three months. His special care nurse called yesterday to let me know that she thought it was moving towards Pneumonia in his right lung.

This is often common in people with advanced dementia because they begin to forget how to swallow strongly at meal time and can aspirate (accidentally drawing material from the stomach or throat into the lungs) which can lead to Pneumonia. 

I will be meeting with the Hospice nurse at 4:00 this afternoon to activate Hospice Care for him. It is a pre-emptive move to make sure he will be comfortable should his illness get worse.

Hospice Care is not a death sentence and does not mean that the person will die soon, just that there is the possibility of needing specialized, more intense nursing care in case the illness does move towards death.

You have heard me talk about not wanting to inadvertently prolong Gregory's life, we both had talked about this when he was still able to do so, and therefore I have decided not to have his doctor administer antibiotics.

In the case of Pneumonia, this could lead to death. So my stand is that Gregory will decide (be able to get over) this latest round of illness by himself (as we keep him comfortable) or he will decide to (euphemistically) "go home."

Of course I will miss him and our daily, although narrow visits. I will be devastated by his death. But my decisions are made with love and only with Gregory's well being in mind and as I said we both agreed on these actions previously, not only for him but also if the decisions were being made for me about my health.

Of course I can intellectually discuss these issues here but with an emotionally heavy, sad heart. I'll keep you up to date as I know more.

Friday, April 24, 2015

Alzheimer's: A Love Story

Watched second rough cut of "Alzheimer's: A Love Story."
Watched it a second and third time.

Gabe, Monica, Amanda, and Riani did a fine job of condensing 40+ years of love and 11+ years of walking the path of Alzheimer's into a 15 minute documentary! Not an easy job. But when you watch it, you will see, it is all about one thing: LOVE!

Next step is for me to attend the screening in LA. As I find out more about PBS and other film festivals, I will keep you posted here. Eventually I will be hosting a screening at the Lieberman Center and at my condo. Finally it will be available here on the blog.

Hopefully the documentary will not only shed more light on Alzheimer's and the JOY carried on the shoulders of SORROW that it brings, but also on same sex couples who are walking the same path that Gregory and I have been on.


Thursday, April 23, 2015

Community Voices is a social issue documentary film program that links Chapman University documentary film students with Orange-County based organizations. Each semester, groups of students produce short character-driven portrait films that highlight causes the partner organizations aim to serve. The films are then used in the outreach and fundraising campaigns of these organizations, and are distributed via PBS broadcast, online streaming, educational distributors, and festival release. Community Voices films have won numerous festival awards and accolades, and have been seen by tens of thousands of television viewers in Southern California. Please join us as we celebrate these students and partner organizations. The screening will be followed by a panel with the filmmakers and a reception featuring delicious, FREE food.

ALZHEIMER’S: A LOVE STORY by Amanda Le, Gabe Schimmel, Riani Astuti, Monica Petruzzelli

Organization: Alzheimer’s Association of Orange County

Alzheimer’s: A Love Story follows Greg and Michael as they struggle with a disease that is actively eradicating the memory of a beautiful relationship 40+ years in the making, and deals with the pain, confusion, and love felt by everybody involved

INSIGHT, by Bryce Cyrier, Ben Weber, Eric Colonna, and Jackson Smith

Organization: Blind Children’s Learning Center

A film about Debi Worstman, who struggles to navigate the challenges of living in a rural area as a blind person.

VOICES FROM ORANGE COUNTY: UNDER THE PEEL by Hannah McDonald, Nelson Tracey, and Emiliana Ammirata

Organization: NeighborWorks

This film features voices from Orange County discussing the income gap in this county, both the wealthiest one in the country and the highest homeless rate.

SPIRIT by Alexandra Blum, Michael Stanziale, Brenna Foley, Julie Martorano

Organization: Coast Spirit Athletics

Two girls and their families figure out how to deal with their disabilities at the varying stages of their lives: childhood, adolescence, and adulthood. They are brought together by a special needs cheerleading team, where a day of competition challenges them to unite and to learn to live with spirit everyday.

WASTED by Vikalp Joisar, Duane Peterson, Dhwani Patel, Savannah Lew

Organization: Waste Not OC

Hannah McDonald volunteers to eat only food that has been wasted for five days in order to bring attention to the amount of food waste in Orange County.

OYSTER by Krysta Mortland, Adam Hahn, and Zach Stanton-Savitz

Organization: Trout Unlimited

A film about the fight to sustain the oyster industry in the context in an ever-changing America.

With many thanks to The Dhont Family Foundation for their generous support of the Community Voices initiative. Contact for any questions.

Tuesday, April 21, 2015

Batia's Art Show Opening April 19, 2015

Bhatia, Gregory's table mate at Lieberman Center had an art show opening last Sunday. The pieces pictured here were done by her some 50 years ago. They are quite wonderful. They reflect Batia's still present intelligence, dry humor, and insight into all things. I have come to love this woman and her daughters who visit regularly. They are all apart of my new Liberman Family!

Monday, April 20, 2015

Responsive Behaviors

On my friend Susan's blog, she received these comments which put violence and aggressive behavior by persons with dementia into a better perspective:

I am the CEO of the Alzheimer Society of Chatham-Kent in Ontario. Having worked with people with dementia for over 20 years, I have learned so much but also acknowledge that there is so much more to learn. Every day our clients and the staff from our Day Program, Respite Program or Counselling Program reveal something new that needs to be considered when giving care.

If you would be so kind as to indulge me, I wanted to share with you the terminology we use for “aggression” and “violence”. Since those two words immediately bring images and thoughts which put those with dementia in a negative light, we have come up with a term: “Responsive Behaviours” which translated means “all behaviour has meaning.” This fits perfectly with the questions you recently posted on your website. So instead of using aggressive or violent, we say the person is exhibiting Responsive Behaviours which may be caused by environmental or medical needs.

Sunday, April 19, 2015

What to Do, What to Do?

Susan, in her blog, describes: On Christmas Eve 2011, shortly after I began caring for Mom full time in her own home, we had a scary fight. We were in her big red brick house on the hill, eight miles from the nearest town. She thought she was in a hotel, and she wanted to go home. It was 3 a.m., the dead of Canadian winter and -16 C outside. We argued for several hours.In the end, she hit me with a large flashlight and then tried to break a window when I blocked her from getting out the door.

Susan then poses 20 questions asking you how YOU would react if someone was trying to do to you what we often do to people with dementia, even if in the name of protecting them.

Click here if you want to see Susan's post. Opens in a new window.

This is my reply to Susan:

The answer to most of those questions, if it was me in mom'e shoes, would be to REVOLT, probably fight back, try to escape, and maybe become violent (like mom did.)

My guess is that the situation was NOT your fault. You probably had no control over the situation and I am not sure what I would have done in your place. Discussion doesn't always work. Rationalizing doesn't always work. Lying doesn't always work (while sometimes that is a good thing to try.) Distraction doesn't always work.

Her reply to me:

You are right it was not my fault in the sense that I was doing the best I could with the knowledge I had under extraordinarily difficult circumstances. But my behavior added fuel to the fire. Not intentionally of course. So it is with many caregivers natural and professional who are not trained in skills, tools, techniques that help rather than hurt the situation. That's what I mean by my fault. I mean it not to blame, but in the sense of one thing caused another...Thanks for helping clarify :-)

My reply back to Susan:

To be honest, I am not sure most caregivers (professional or other) are trained in skills, tools, techniques, etc. Since each situation is different one must "go inside oneself" to tap what they know about the person they love and try to discover what might work.

I might add the FORGIVENESS of self is always a good step. I learned by doing, I learned along the way, I learned what NOT to do. I am not proud of some of the things I did but I have forgiven myself now. I know Gregory has forgiven me and even in the heat of a bad situation, after I apologized, he would tell me it was OK. Once he said, "Michael, I do not expect you to change, just be here for me!" How is that for forgiveness?

Now there are several techniques I use when Gregory gets upset, although he gets upset in a vague, nondescript way. I cannot tell what he is upset about. One thing I do is try to comfort, hug, pet, kiss. Offering him a cookie or pretzel and popping it into his mouth help distract. Another thing I do is agree and nod or utter things like "Ah. Hummmm. Huh." 

If he is still upset, I tell him "I have taken care of it. You do not have to worry." He will look at me strangely and I will repeat, "I have taken care of it. Everything is arranged. You have nothing to worry about. Everything is good. Everything is wonderful. (Accentuating the positive.) He will finally look me square in the eye and say, "Really?" I will assure him to the affirmative. He will sigh, release a breath, and say something like, "Oh good." And the crisis passes. 

Sometimes just waiting quietly and letting him rant helps. Sometimes a shout, like "Gregory now stop that" snaps him out of his anger. And finally: lie, lying is a blessing in disguise.

With your mom, if I was in that situation and discussion, rationalization didn't work I would try: passage of time, food, distraction, postpone "going home" until after dinner, help her pack and then talk about leaving tomorrow.

Perhaps I would stand outside with her in the cold (making sure she did not run) and we would "realize together" that it is too cold to act right now. If she was verbal I would ask questions like why do you want to go home, what is the matter with this lovely hotel?

Gregory has been non-verbal for a long time so I am aware that words do not work with him. As I do with Gregory, I would always be aware of possible violence and try to avert it. Stay out of hitting range. Secure blunt objects at all times? Not let him grab my hands, arms, or body. 

What I would not do with Gregory or mom is argue, get angry, threaten, tell her the consequences of the cold, continue to convince if I was not winning, try to rationalize because that is not what the person with dementia needs.

Enough rambling?

Saturday, April 18, 2015

Emotions and Living with Uncertainty

This post deals with difficult, crippling emotions which bring suffering with them: like anger, fear, pain, regret, sorrow. Other emotions like love, joy, happiness are a different story and do not bring suffering with them.

In My Stroke of Insight, the brain scientist Jill Bolte Taylor’s book about her recovery from a massive stroke, she explains the physiological mechanism behind emotion: an emotion like anger that’s an automatic response lasts just ninety seconds from the moment it’s triggered until it runs its course. One and a half minutes, that’s all. When it lasts any longer, which it usually does, it’s because we’ve chosen to rekindle it. (Again, Ms. Taylor is talking about difficult, painful emotions.)

Acknowledge the feeling, give it your full, compassionate, even welcoming attention, and even if it’s only for a few seconds, drop the story line (past fears, experiences, or expectations) about the feeling. This allows you to have a direct experience of it, free of interpretation. Don’t fuel it with concepts or opinions about whether it’s good or bad. Just be present with the sensation. Where is it located in your body? Does it remain the same for very long? Does it shift and change?

The challenge is to notice the emotional tug when it arises and to stay with it for one and a half minutes without the story line. Do this once a day or many times throughout the day as the emotions arise. This is the process of unmasking, letting go, opening the mind and heart.

Before long you be able to use your emotions as a barometer, a measure of where you are, what you are thinking, what you are dealing with. As you unmask the emotions you will be able to work through them and get on with your life instead of letting the difficult emotions cripple you.

When difficult emotions arise; welcome them, bless them, sit with them briefly and experience the pure emotion fully. Then send them on their way; hopefully with a feeling of peace and eventually with the feeling of a new gained ability to live your life without the suffering that emotions can bring if you hang on to them, rekindle them.

(P.S. Another thing I sometimes do is welcome the emotions but let them know that I do not have the time now to sit with them, and invite them to come back at another time. You'll be amazed at how quickly the minute and a half passes without your being swept up in the emotions so you can continue to experience and enjoy the more important parts of your life. But do remember to invite the emotions back at another time instead of just postponing and avoiding them!)

(Taken in part from Living Beautifully with Uncertainty and Change by Pema Chödrön.)

Sunday, April 12, 2015

Lieberman Center Entertainment Sundays

La Belle Duo performed today at Lieberman Center. They sang old classics, show tunes, and opera. 

Here is a close up look at Gregory and his bear "Peaceful" enjoying the day: smiling, thoughtful, tearful, whistling along, pensive, and best of all - fruit and cookies!