A memory on a postcard

Today I want to highlight a nonprofit organization that I just stumbled upon. They’ve been around since 2009, so many of you may be familiar with them, but I wasn’t. The group is called The Spaces Between Your Fingers Project and the group writes memory snapshots for people with Alzheimer’s that are recorded on postcards and sent to families. The service is free, and a copy of the memory postcard is kept in the Free Library of Philadelphia for archiving purposes. The organization has collaborated with the Alzheimer’s Association in the past. The group also has set up an online tool that allows anyone to record a memory postcard, whether they have dementia or not.

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I love this concept, it is so unique and is a great way to encourage people to record family memories. If you are wondering what “the space between your fingers” means, there is a lovely storybook on their site that takes you through the very touching tale inspired by the founder’s grandfather. You may look at Alzheimer’s in a whole new light.

I plan on giving the service a try soon and will share what I create.

What is the first memory from your life that you would want to preserve?

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Today would have been Dad’s 82nd birthday

Today would have been my father’s 82nd birthday. He is so missed each and every day, but I am thankful that Alzheimer’s didn’t keep him trapped in a diseased world for any longer than it did.

But today is a reminder of why I have become an Alzheimer’s awareness advocate. I have become a more compassionate, aware person thanks to my father. To honor my father, and to help those who are going through the same thing with their own parents is now part of my life’s mission. I can no longer give my dad birthday gifts in this world, but trying to make a difference and battling the terrible disease of Alzheimer’s is a gift I will continue to give for the rest of my life.

I’ve posted this before, but I want to share again this montage of photos and my dad singing to me when I was a baby.

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Reimagining the simplest things

I’ve finished reading my advance copy of Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias and I am deeply moved by the brave and loving stories shared in this collection. As we approach the release date of April 22, 2014, I will be blogging about some of the stories that I found particularly touching.

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One such story was about a man who had been married for many, many years to the love of his life. Once his wife was diagnosed with Alzheimer’s, he tried his best to adapt their lives to deal with the disease. One area where his wife really struggled was with telling time. For those of us who have dealt with Alzheimer’s in our own family, we are all too familiar with the “clock test” and how that is used as one marker to determine a person’s cognitive functioning. My dad never took the test that I am aware of, but my mom did. My mom does not have dementia, but when she developed cancer, she was so ill that she stopped eating and her potassium levels dropped dangerously low. This can impact cognitive functioning, and boy, did it ever. I watched my mom struggle to draw that clock, and I thought my mom was facing the grim future of my father. Fortunately, her cognitive function was restored once her illness was treated.

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But back to the story. After the wife repeatedly asks the husband in the span of a short time when dinner is, the man puts on his thinking cap. Knowing that she cannot tell time now by a traditional clock, he sets out to recreate the tool we use to tell time. He removed the second hands and the minute hands, leaving only the hour hand moving. He then places a piece of tape above the hour they are going to eat. With the simplified version of his clock, his wife can now understand when their next meal will be, relieving a bit of stress for both of them.

Will there come a time when his wife will not be able to understand even the reconfigured clock? Probably. But the love and wisdom shown in the husband’s actions will definitely withstand the test of time.

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Alzheimer’s Hitting Women the Hardest

Joy Johnston:

An important message for all women.

Originally posted on Dealing with Dementia:

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Dr. Oz is telling me how to minimize my risk of Alzheimer’s disease. Heredity hasn’t doomed me thankfully.

I was surprised to learn that Alzheimer’s is more likely to strike women in their 60s than breast cancer. Today, Alzheimer’s is the sixth leading cause of death in the United States.

Every 67 seconds someone in the United States develops Alzheimer’s disease, and it’s taking a heavier toll on women than men, according to new information released by the Alzheimer’s Association in March.

The “2014 Alzheimer’s Disease Facts and Figures” [PDF] report found that women age 65 have a one in six chance of developing the disease, a type of dementia that causes problems with memory, thinking, and behavior. Meanwhile, men the same age have a one in 11 chance of developing the disease. Women in their 60s are also twice as likely to develop Alzheimer’s than breast…

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If only Alzheimer’s was a cruel April Fool’s joke

If one had to pick a holiday to associate with Alzheimer’s, it would definitely be April Fool’s Day.

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Our loved ones with early to middle-stage Alzheimer’s often appear so normal, just how they’ve always looked to us. (During the latter stages of Alzheimer’s, the physical symptoms of the disease tend to be more readily apparent.) But then they open their mouth, or don’t respond to their name, or don’t recognize that you are their loved one, and it is like the cruelest April Fool’s joke in the world.

If only our loved ones were pulling off such a prank, and could snap back into their old selves while laughing and shouting, “April Fool’s!”

As I’m reading the wonderful stories in the upcoming “Chicken Soup for the Soul Living with Alzheimer’s and Other Dementias” book, I found two Alzheimer’s-related behaviors that fascinate me. One relates to April Fool’s in that humor can still be found in the Alzeimer’s experience. Often it is unexpected or unintentional humor, but it is there if you seek it out. The other is the way the disease works on the brain and how people with even mid- to latter-stage Alzheimer’s can sometimes have a lucid moment. Time and time again, people described how it was like a veil was lifted, or the fog dissipated, albeit temporarily. I remember experiencing this with my father, and what precious moments those were for me.

But then Alzheimer’s would cry, “April Fool’s” and my dad’s mind would be lost in the fog of dementia once again.

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Supporting a grieving friend

I want to take a moment to send my condolences and loving support to Terry Shepherd. While I have never met her in person, I feel I know her quite well, as I’ve been following her terry1954 blog for awhile.

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Terry was the primary caregiver of her brother, Al, who had a terribly debilitating disease called Multiple System Atrophy. Al was mentally challenged as well, which complicates the caregiving situation. Over the last several months, poor Al has essentially been dying a slow death. While Terry had some home health help and a dear friend who would offer her moments of respite, Terry took care of most of Al’s needs, from feeding to bathing and changing his diaper. Terry bravely and beautifully documented her caregiving experiences on her blog. She has many blogger friends who like me, know what a special person she is and offered support and advice throughout the ordeal. On Monday, Terry wrote on her blog that the angels came.

Those of us who have experience the death of a loved one, especially when long suffering is involved, know that there is some level of relief that their loved one is free of pain and disease. But of course, the grief at the loss of someone you’ve been so close to and have taken care of is still so painful to bear. If you have any words of solace or support you would like to send along to Terry, you can do so on her blog.

I have learned so much from Terry. The patience, love and fighting spirit she had in caring for her brother is admirable and a great example for all of us to follow. She does not sugarcoat the caregiving experience: the loneliness and isolation, the frustration with care providers, the hopelessness and exhaustion. Terry bares her soul on her blog, and I can only hope that her blog followers offered her at least some solace through our support and prayers for her and Al.

Rest in peace, dear Al. I hope you are flying with the angels.

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The most difficult lessons of caregiving

I finally had the chance to read Jai Pausch’s memoir, “Dream New Dreams.” She was the wife of Randy Pausch, the professor who gave the moving “Last Lecture” that went viral a few years ago. As you may remember, Randy bravely battled pancreatic cancer, and Jai served as his primary family caregiver. The couple also had three young children at the time. The memoir covers all of the aspects of caregiving and the physical, mental and emotional impact being a caregiver has on an individual and a family. Jai Pausch writes with honesty and bravery. I highly recommend the book to other caregivers. There is a lot you no doubt will relate to in this book.

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One of the most poignant and enlightening moments of the memoir for me comes near the very end of Randy’s journey with cancer. Jai does not sugarcoat the impact that cancer had on their relationship as husband and wife, and how she often struggled to maintain the household, raise three young children essentially alone, and try to be a loving caregiver to Randy. In the last month of his life, they make one last trip together for an experimental cancer treatment. Jai admits that they were not getting along. In front of a social worker at the hospital, Randy said something about his wife that hurt her deeply.

“He said he felt I was unempathetic: doing a great job of all the things anyone could do, and a terrible job on the things only I could do.

Wow, what a devastating statement from a dying man. Jai was of course wounded by this accusation, as any family caregiver would be. Here she was, running the household, paying the bills, taking care of three kids under six years of age and being a caregiver for a cancer patient, and he had the nerve to complain? Jai really didn’t think she could do any more than she was already doing.

Jai recounts what their wise psychologist suggested when Jai told her the crushing words Randy had said: “He wants you to tell him you’re going to miss him when he’s dead.”

That is blunt advice to be sure, but it was a breakthrough moment for Jai as a caregiver. Jai was working so hard to maintain a stoic exterior, to not make Randy feel guilty about how much pain she was going to feel when he died that she was coming off as cold and uncaring to him. So on the doctor’s advice, she went to Randy and cried and expressed how much she was going to miss him. Jai says Randy was comforted.

I think this is a great lesson for all of us caregivers. We work so hard to be invincible that sometimes we forget we are human. While we may want to shield our sick loved ones from much of the pain, sadness and frustrations we feel, we should not do so at the expense of cutting off emotions altogether. Randy was right: almost anyone can perform the physical duties of caregiving, but the love you have for that person is unique and only something you can express. Take time to show how much you care.

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