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.

Tuesday, May 31, 2011

Care Partners

This article was taken from "Perspectives" 
Lisa Snyder, LCSW UCSD Shiley-Marcos Alzheimer’s Research Center 9500 Gilman Drive – 0948 La Jolla, CA 92093 Phone: 858-622-5800 Fax: 858-622-1012 email:

Creating Caring Partnerships

We frequently hear and read about Alzheimer’s “caregivers.” This word implies that others give care to the person with Alzheimer’s who receives it. In fact, many people with Alzheimer’s or a related dementia are quite capable of being caring to those who are trying to care for them. More recently, the term “care partners” has received some attention as a more descriptive term for the relationships that can occur in the early-stages of a dementia.

We asked people living with Alzheimer’s or a related disorder: What are the qualities of a good care partner?

Their following answers apply to all in- volved in the care partner experience whether you are the person with early- stage dementia or a loved one:

“Don’t gang up on or crowd a care part- ner. It can be overwhelming if too many people are trying to help at once with too many different ideas.”

“The ability to listen and not be talking all of the time is important in a respectful care partnership.”

“A happy person – someone who smiles and tells an occasional joke.”

“It’s good to have things that you enjoy doing together – shared interests and ac- tivities make a more positive care partner- ship.”

The ability to have open communication and say things that are important to you without the other person getting all worked up.”

“Compassion is an essential ingredient in a care partnership – trying to understand what the other person may be going through. Alzheimer’s can be hard not just on me but on those around me.”

“Don’t always do things for the other per- son; partner with the other person so you accomplish things together. My wife and I do the bills together now and although she does the cooking, I try to do the dishes.”

“Put on your ‘listening’ ears – it’s not enough to just hear someone. You have to pay attention and listen to their message without a lot of other distractions.”

“Adjust your expectations of each other. Sometimes my wife wants me to try to do something that I just don’t think I can do anymore. And sometimes I ask more of her and expect her to do too much or am not sensitive to everything she already does for me.”

“Try to reduce each other’s stress level. Sometimes small acts of love or kindness go a long way.”

“Look out for each other’s health. I need help with my medications because I forget what I have to take, but my husband needs to exercise so I make sure we walk every day.”

“Good care partners know when to step in and when to back away. Everyone needs a little space and some peace and quiet.”

Hanger Hell

Can you imagine not being able to figure out how to use a hanger? Let alone which hanger to use for a shirt and which to use for a pair of pants? And when the color of a hanger changes, it becomes something else. Can you imagine?

Saturday, May 28, 2011

Caregiver Affirmations

Caregiver Affirmations
by: Janet Edmunson

I will hold on to my passions, because they are the essence of who I am
I will give myself credit for staying strong despite being pushed to my limits 
I will give myself grace when I occasionally blow it
It’s perfectly normal to grieve even before my loved one dies

I will explore life’s adventures together
I will look for the gifts that only this type of tragedy can afford
I will let the love flow, even when all else is lost
I will expect that some people will find it difficult to visit my loved one.
That’s okay—it doesn’t mean that they’ve stopped caring.

I will make it easier to get through difficult times by creating traditions to memorialize my loved one
I will make meaning out of this disease

by Janet Edmunson, M.Ed. and author of
Finding Meaning with Charles: Caregiving with Love through a Degenerative Disease

Friday, May 27, 2011

How To Explain

How do I explain the interaction?
I speak with words, but they echo to the wind.
He responds as if my words were never his words.
And my thoughts echo, reverberate as though I was never spoken.

Wednesday, May 25, 2011

Its the little things...

It is the little things that do matter in helping to keep Gregory active, involved, respected, and loved. Letting him help as often as possible, even in little ways, helps give him purpose and the sense of sharing our daily life. It helps him to depend on me more when he knows I continue to depend on him. Always acknowledging my appreciation and saying "Thank You" even though I am thanking him about the same things each day and sometimes several times a day, gives feelings of love. Keeping an eye on what he still can do ... at least do today, and letting him do it, allows him to keep his self respect. Not correcting but rather "walking behind and fixing" is also helpful. Telling him "I love you" many times a day, touching his face or back, planting a kiss, all tell him that I am here and will be here to support him.

Monday, May 23, 2011

Both Cases: A Poem

"I will miss you." he said.

"Why?" I asked.

"Because I am leaving." he replied.

True in both cases.

He was going for a walk.

He is becoming less with me.

Sunday, May 22, 2011

Happy & Coping

I think I have written this before but after responding to a friend who read some of my Alzheimer's Blog and who I used to teach with many, many years ago, I felt it was worth saying again.

Again, thanks for the kind words. I like to say that on a scale of horrible to horrible it is terrible. But as you could tell from my writing, Gregory is happy and content and I am coping. We both seem to have Piece and Peace of Mind. Thus, we are doing well. I also like to say that if it stopped here I would be grateful but... and I try not to dwell too much on the future. We consider ourselves blessed and wake up each morning to face the day with love and joy. Take care.

I haven't been writing much as I have told you previously because of all the time, effort, work, joy, and magic of getting Michael's Museum at the Chicago Children's Museum up and running. Gregory took great joy and pride in coming to CCM with me during the month of April and the first half of May to help with the unpacking and installation of the MM exhibit. One morning he commented in the car, "I really like getting up so early and coming with, it is like I have purpose!" That sounded good to me.

Michael's Museum Exhibit Photos - Michael Horvich - Picasa Web Albums

Monday, May 16, 2011

Gingrich on Alzheimer's

Newt GringrichAP – In this image released Sunday, May 15, 2011, by NBC News former House Speaker Newt Gingrich is interviewed …
WASHINGTON – Republican presidential contender Newt Gingrich on Monday said Alzheimer's disease is on pace to cost the government some $20 trillion over the next four decades and said boosting federal research money would be a wise investment.
Gingrich, the top Republican in the House during the 1990s, is mounting a presidential campaign on the premise he is a policy heavyweight who can lead a fractured GOP field. His speech to Alzheimer's advocates meeting in the capital largely eschewed politics but made clear his hopes to run as an idea man.
"I want to know, not what we can afford in the federal budget. I what to know what (researchers) can do if they have the resources they need to accelerate the breakthroughs to save lives and to save money," Gingrich said.
"We are grotesquely underfunded," the former House speaker said flatly of health research dollars.
Gingrich, a former Georgia lawmaker, proposed selling U.S. bonds to raise money for Alzheimer's research, which would take federal research dollars out of the political competition for a share of the federal budget.
Gingrich cited figures from an Alzheimer's Association study — conducted by a subsidiary of insurer United HealthCare — which projected the total cost to the U.S. economy of the disease at $20 trillion through 2050.
Another study projected that Medicare and Medicaid spending to care for those with Alzheimer's would reach $800 billion annually, adjusted for inflation, by mid-century. Current spending is $130 billion annually. In terms of costs, the study suggests actual spending of $1.1 trillion through 2050 with the balance of the $20 trillion cost involving lost wages and worker productivity.
The industry-funded study also suggested that a drug that could delay the onset of Alzheimer's by five years could cut government spending by half in 2050.
Gingrich pitched the spending — with a bottom line undefined — as a way to shave the budget. He said that scientific research should be above politics.
"Alzheimer's should be a totally nonpartisan issues because Alzheimer's doesn't' respect Republican or Democrat, it doesn't respect liberal or conservative," Gingrich said. "Alzheimer's affects everybody at every part of American life. Therefore, we should be able to come together as Americans to have a health conversation with no partisanship."

Thursday, May 5, 2011

Breakfast Tea

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

"Oh shit!" comes Gregory from the kitchen.

"What's the problem?" I inquire sitting at my computer in the bedroom.

"My tea," comes the answer.

I go into the kitchen to see how I can help. Turns out he forgets to put a tea bag in his mug and this stops him cold. He remembers to set up his breakfast tray, his cereal and fruit are ready, the green mug sitting on the tray. He fills the electric kettle with water and switches it on. Boiling, the kettle turns itself off. This is where the confusion begins. Such confusion that I am not really sure myself what is going on.

"I forgot my tea. I guess I'll have to start over."

"But you just forgot to put a tea bag in you mug." He looks into the cereal cabinet for the answer. I open the tea cabinet, taking out a tea bag and putting it into his mug. I pick up the kettle, pouring the hot water into the mug. Explaining as I proceed.

"That's all there is to it. You don't have to start over. You just forgot to put the tea bag in your mug."

"Oh. OK. Thank you."

Every now and then something happens that moves me to tears. Every morning Gregory makes his own breakfast. Every now and then Gregory gets confused in the process. This morning such an occurrence has moved me to tears.

Gregory doesn't seem too upset by all this. Then why am I moved to tears? At the loss? At his confusion although he doesn't seem too bothered by it? At what it must feel like for him but in my imagination not his? At my fear? Tears are gone now. The day continues.

Sunday, May 1, 2011


hiatusnounthe spring hiatus gave us time to rethink our next projectpausebreakgap,lacunaintervalintermissioninterludeinterruptionsuspensionlull,respitetime outtime offrecessinformal breatherletup.
Check out as the opening of Michael's Museum at The Chicago Children's Museum on Navy Pier gets closer: Friday, May 13, 2011.