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 Advice. Show all posts
Showing posts with label Advice. Show all posts

Thursday, September 24, 2015

Training the Trainers

Thanks again to Kate Swaffer http://www.kateswaffer.com for sharing Damien's post.

Damien Murphy, on a recent blog post at "Working Towards a Dementia Friendly World" talks about the imbalance of support for those with Dementia/ Alzheimer's vs support for their caregivers. 
I am reprinting part of it here, you can click through to the entire post using the link below.
Damien notes that Caregivers are given a lot of advice and support while the PWD/A (Person with Dementita/ Alzheimer's) is often not coached in what to expect of the diagnosis/ disease and/or how to deal with it.
Seeing Demien's suggestions for what advice/ warnings might be given to a PWD/A made me revisit many of the things I "did" to Gregory with or without realizing. It also showed me those things I was careful NOT to "do to" him.
While my first thought was "it was done with love" (which made me feel better) and my next thought was  "it is only human nature" (which it is,) I realized that with better education of BOTH PARTIES involved in this Roller Coaster Ride, a better quality of life could be achieved. 

Where are the supportive information leaflets, the training sessions or the tabloid headlines that flag up the devastating and dangerous BPSC (The Behavioural and Psychological Symptoms of Caring) that could cause so much stress and be such a burden to those people who just happen to be trying to live well with dementia? So, to redress the balance, below I want to flag up a warning for those unsuspecting people with dementia about some of the challenging behaviours a carer might present you with.

They might answer the question you're about to answer.

They might talk over you

They might point out your mistakes

They might correct you

They might talk about to others when you’re there.

They might speak too quickly for you

They might interrupt you in full flow

They might dismiss what you say as untrue or false.

They may patronise you.

They may frequently undermine you

They may expose you to failure just to show others they’re right.

They may seek frequent opportunities to catch you out and ‘score points’ in the relationship.

They may control you

They may disempower you.

They may blame you for your dementia

They may tell you off

They may treat you as ‘full blown’ from the moment of diagnosis.

They may hide things from you.

They may contradict you

They may try to rip you off or deceive you

They may ignore you.

They may take away your independence.

They will frequently test you

They may exclude you

They may shout scream or cry.

They may humiliate you or make you feel a burden, when offloading about how stressed they are.

Tuesday, June 9, 2015

Teepa Snow on Dementia/Alzheimer's

I have seen one of Teepa’s presentations on video previously. Because of Susan's links I just watched 4 more and will finish the rest tomorrow. I am amazed at how much better I would have done with Gregory if I had seen these 5-10 years ago (if I would have been ready to listen that is. Sometimes hindsight is easy.)

I am amazed at how to the point Teepa is, how practical, how “right on!” While Dementia/Alzheimer’s is never easy, she shows that it doesn’t have to be as hard as we make it for ourselves as caregivers and loved ones of people with Dementia/Alzheimer’s!

Thanks so much Susan, Susan Macaulay, Amazing Susan for sharing this!

http://myalzheimersstory.com/2015/06/09/10-teepa-snow-videos-on-dementia-basics/#respond

Saturday, November 15, 2014

Good Advice

This advice is so "RIGHT ON!" All the worries, sadness, dispare solved in a way that is very humorous.


Wednesday, July 2, 2014

Coffee With A New Friend

Today I had a coffee with a friend who is facing Alzheimer's withF her father. In the beginning, most of us go through this alone until it is time to reach out or until it gets so bad that it feels beyond our comprehension and/or control.

So I was happy to be able to be a good listener and to offer some advice, free for the taking. I think just having someone to talk to is helpful if only to hear yourself admit what you already are thinking, what you already know, what you fear.

A big part of my advice was that in many ways fear has no place in dealing with Alzheimer's. It isn't productive, it doesn't solve any of the problems that will arise, and very often many of the things you could have allowed yourself to fear DO NOT HAPPEN. 

How does one overcome fear? I don't know how I did it, but in some ways having confidence in myself, enlisting the moral support of family and friends, looking at my successes, being grateful for the good stuff still left, trying not to feel perfect and by not feeling too guilty when I wasn't ... and by deep, deep breathing.

I found meditation helpful in letting me "escape from myself and my voices" so I could hear the comforting words of the universe sooth me. I knew a lot about meditation (or thought I did) and just berated myself for not just "locking myself in my darkened closet and doing it!" 

One day my massage therapist introduced me to a woman who she felt would do me some good. I signed up with this woman for meditation classes, previously not having realized that one needs to be taught how to meditate, that in fact part of the practice of meditation requires one to HAVE A TEACHER to support and guide you. What I learned with Corinne, in many ways, has saved my life -  or at least given me a more peaceful one!

Even though each of us on the giving side of Alzheimer's and those on the receiving side of Alzheimer's (read any type of dementia,) go through this insidious disease in a way that is as unique as the individual personalities involved, there are many things which we have in common: dealing with fear, the unknown, disbelief, unwanted and unexpected change, difficult often unilateral decisions, somehow getting through this to the other side - whether it be in this life or the next.

In an e-mail that my friend sent thanking me for my time today, I replied:

You are very welcome! As I said, it will get worse but it will get better. You will run into obstacles you cannot foresee but the solutions will find you. You know in your deepest heart what you want for you dad and you will be able to do it as the time comes.

With your dad's "aggressiveness" you may run into complications but I understand him to not be physically violent. There are drugs to help with this. Most places will want to do an evaluation of your dad before making any commitments. 

Something else I did not mention is that there is no such thing as telling a lie when it comes to Alzheimer's. Any reply, true or false, is meant to pacify the person with dementia ... truth does not matter. Believe me I have learned to "lie" to Gregory. But then again, what is a lie? An embelishment? An exageration? A half truth? An omission? Someone else's point of view? NO ONE IS JUDGING.

A "visiting friend from college" can really be the psychologist who is observing and prescribing. The "car breaking down and not being able to afford a new one" can easily help solve the problem of a person dealing with no longer being able to drive.

When Gregory gets upset or depressed or angry and is unable to explain why, I go into my "Everything is OK. I have taken care of everything. You have nothing to worry about. You just have to be happy. I have lined everything up that needs to happen. It is all taken care of. No need to worry. I love you. You love me." MANTRA. And guess what, Gregory is able to calm down. I had no idea what was bothering him and he doesn't know that but he trusts that I have taken care of everything, and even not knowing what it was, I probably have! That's what comes with loving someone for over 39 years!

Thursday, February 6, 2014

A Reply

In response to a letter from a former work mate of Gregory's (http://mhorvichcares.blogspot.com/2014/02/a-letter.html)


Dear Mary Ellen and Bob,

What can I say. I am so sorry that you are going through this. Never easy. Trite comments like "But we have so much for which to be grateful." are true but help little. People over the years have always been very kind with their advice, their "be good to yourselves," their love and affection, their suggestions. But in the end nothing really helps, does it? My "trite" comment for you would be, "Love is all we really have. Cherish it. Hold on to it." That has been my guiding principal.

I know, however, that advice from others doesn't really help until it becomes part of your own experience. I am happy that in some small way my journey with Gregory has been helpful to you both. My fervent wish for you, as it has been for me, is that I wish I could make it all go away! But since I cannot, I'll share Gregory and my motto that helped for many years, "We have a choice, lie down and die or hunker down and keep going the best we can!

Mary Ellen, Gregory always loved working with you and Thresholds was one of the career highlights of his life. He learned so much about people and caring and during that time of his life he met me, worked through leaving his wife after seven years, and eventually returned to his first love Architecture. He truly loved helping the residents at Thresholds; cooking with them, teaching life skills, going on shopping trips. In many ways you, and Jerry Dincin and Thresholds gave him a new identity which he has held on to this day.

Thanks for writing and sharing your thoughts. In many ways they bring tears to my eyes. When I am able to step aside from my grief, my anger, my impatience, often my lack of compassion, my fear, my loneliness, my being less than perfect in my support of Gregory, my selfishness ... I do know that I did a wonderful job helping Gregory cope and manage to live with Alzheimer's for so many years. And even today when he is so much less than he was, and in my role as Secondary Care Giver with Lieberman taking most of the responsibility, he is safe, well taken care of, and loved by many many people.

Michael

Wednesday, July 17, 2013


How to Gain a Sense of Control Over Dementia

By , Caring.com senior editor
Hopelessness is a strong -- and strongly poisonous -- emotion for caregivers. Unfortunately, it's also a perfectly natural response to the relentless march of dementia. The way to combat a sense of losing hope is by gaining control.
A few ideas about how to do this:
  • First, realize that there are many choices within dementia care. Every symptom, for example, can be handled in a multitude of ways. There may not be a perfect solution, or one that turns things back to how they once were, but at least there's usually some way to respond that helps you feel like you're doing something and improving matters for you and your loved one.
  • Address troublesome emotions by talking to a trusted friend or a trained counselor and by writing them out in a secret journal or to a circle of other caregivers in online community posts. The basic act of "naming" your feelings and problems helps you to gain mastery over them, psychologists know.
  • Do one positive thing for yourself each day. Whether big (arrange to get away for an hour by yourself) or small (buy yourself flowers at the supermarket), every act of self-kindness puts you on a path toward, not away from, hope.

Wednesday, March 20, 2013

Hope & Fear

Besides good advice, I have highlighted why I so like Ms. Chödrön's advice.

March 20, 2013

WE CAN’T JUST JUMP OVER OURSELVES

Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can’t simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what’s going on, but that there’s something missing in us, and therefore something is lacking in our world.

Rather than letting our negativity get the better of us, 
we could acknowledge that right now we feel like a piece of shit and not be squeamish about taking a good look. That’s the compassionate thing to do. That’s the brave thing to do. We can’t just jump over ourselves as if we were not there. It’s better to take a straight look at all our hopes and fears. Then some kind of confidence in our basic sanity arises. 

From:



Saturday, January 19, 2013

Dear Abby,


GettyImages_3200587_DearAbbyPauline Phillips, the woman you probably all know as Dear Abby and who wrote under the name Abigail Van Buren, was never afraid to bring tough topics into public discussion. Alzheimer’s disease was no exception.
In 1980, long before her own diagnosis with this devastating disease, she brought dementia into the spotlight when she published a letter from a woman who had recently learned her 60-year-old husband had Alzheimer’s.
The woman, who signed her letter “Desperate in New York,” wanted guidance on how to cope. She felt isolated and helpless. She needed information.
Dear Abby’s reply began, “You are not alone.”
And she wasn’t.  At the time, it was felt that Alzheimer’s disease was a major epidemic in the United States.  Today, it is estimated to afflict more than 5 million people.
Dear Abby directed her to the Alzheimer’s Association, a newly formed group that came together to assist people with the disease and their families, raise awareness, advocate for state and federal help, and increase government funding for research in hopes of finding treatments and a cure. My personal involvement with the Association resulted from the fact that my father, three of his brothers and two of his sisters died from Alzheimer’s disease.  In addition, in 2012 one of my cousins died from this disease.
At the time Dear Abby wrote to ‘Desperate in New York,” I was president of the New York Chapter as well as secretary/treasurer of the National Alzheimer’s Association. The national headquarters were run out of my law office in New York City, and my staff and I were fielding calls for information and referrals.
Within two weeks of the Dear Abby column being published,  we were inundated with more than 22,000 pieces of mail requesting information. Dear Abby put Alzheimer’s disease in the public spotlight and put the Alzheimer’s Association on the map.
In the years to come, Mrs. Phillips continued to raise Alzheimer’s awareness, publishing numerous Dear Abby columns that connected those needing support to Association resources. Then, 15 years after first bringing the topic to readers across the globe, Mrs. Phillips – a woman known for her strong intellect and straight-talk – began showing signs of the disease.
Yesterday, after living with Alzheimer’s for more than a decade, she passed away at the age of 94.
Mrs. Phillips once wrote: “The purpose of life is to amount to something and have it make some difference that you lived at all.”
When Alzheimer’s disease finally becomes a distant memory, when a cure is discovered, Mrs. Phillips will be right on top of the list of  people who humankind will owe it’s gratitude for ridding the world of this terrible disease.
The difference she made is profound. By encouraging people to talk and providing information when it was needed, she changed lives.  She let those living with Alzheimer’s know they aren’t alone. By spreading awareness of Alzheimer’s disease, she helped enable the Alzheimer’s Association to get public funds to help and support families, educate caregivers, and increase the research budget from about 2 million in 1980 to more than 450 million today.
I wish to express my personal condolences to the family and appreciation to Mrs. Phillips for everything she has done to eliminate Alzheimer’s disease.  May she rest in peace.
Lonnie Wollin
About the Blog Author: Lonnie Wollin is an attorney in New York and one of the founders of the Alzheimer’s Association. He remains actively involved with the organization.

Friday, October 28, 2011

My Mantra & My Advice to Others

This is my mantra and my advice to others who are dealing with being a caregiver for whatever reason; be it an elderly parent, an ill life partner, the day to day relationship and needs of a spouse, a mother for her child as he grows up.

"Be good to yourself, take time for yourself, believe in yourself, all you really have is yourself!" (Michael A. Horvich 2011)

People would always say, "You need to take care of yourself." Had figure out what that meant in the middle of the continuous crisis that is Alzheimer's. Easy for them to say but you're the one in the middle of the cyclone. But one day you learn. As you will have to do for yourself.

You need to be selfish. Selfish doesn't mean selfish. It means SELFish. If you don't take care of yourself first, you will not have the energy, time, and/or spirit to take care of others. If you are in poor health you will not be able to help others. If you are frustrated and angry, you will not be able to be organized and calm.

I have learned. One day you will too!