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.
Sunday, April 26, 2015
|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.|
Saturday, April 25, 2015
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.
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
Thursday, April 23, 2015
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
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 email@example.com for any questions.
Tuesday, April 21, 2015
Monday, April 20, 2015
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
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.