This post is from Lori W who read our recent article “Message from My Mother” by Jane Snyder.

I just read your message about your Mother leaving a small message in the bottom of a drawer. I also have lost a parent to Alzheimer’s in 2008 – my Father.

He was so talented in carpentry and could make anything he put his mind too. So sharp and quick witted, so very lovable, he was a kind spirit and loved by many. He lived with Alzheimer’s for 8 years. Like you said, there were small signs of, ‘something isn’t right’, The family was at the stage of, is he or isn’t he? Of course we wanted to believe that he wasn’t stricken with this horrible disease.
 
One day I came to the house looking for an article in the local paper. My mother said it must be downstairs in the recycle bin, and my father said he would go get it. I told him it was Monday’s paper. He got half way down the stairs and came back up and asked me, what’s Monday? I guess that was the defining moment for me.
 
I went to visit him one day at the nursing home. I could tell he was aggravated and he didn’t want visitors nor talk to anyone. It was one of several times that this would be a short visit. As always I kissed his bald head and told him that I loved him and walked out of the room.

As I was in the elevator, which was directly across from his room, I would turn around to face him and give him a smile and a wave, but this time when I turned to face his room he had wheeled himself to the door of his room, he looked at me and with his right hand closed, he softly pounded his chest as if to say, I love you too. I ran to him and hugged him and told him, ‘I knew you were in there someplace.” 

I cried the whole way down the elevator and all the way home. I did not tell one family member about my experience as I felt it was meant just for me. Maybe selfish but it was my moment. Three days later he slipped into a deep sleep and passed away on the fourth day.

Lori W

I was invited to speak in Washington DC with the support of Alzheimer’s Disease International (ADI). My topic was to discuss “Changing the Face of Dementia: The Stigma”.

While flying from Salt Lake City to DC, across from me was a gentlemen deeply involved in his reading materials. On our descent he asked me why I was going to DC, and I answered that it was to speak about Alzheimer’s and dementia. That engaged us in a brief but very emotional conversation.

He was a pilot on his way home. He shared that his father had died relatively young at 70 years old of Alzheimer’s in a tragic accident. His father was under the care of his mother and brother. One afternoon they thought he was resting  peacefully in his bed for an afternoon nap and his mother and brother resumed their everyday tasks as they have done so many days before.

But this day was different. His father had decided to leave the house as he had so many days before his Alzheimer’s. They realized it too late – he was nowhere to be found. They quickly called the police and the search began.

Where they thought he would have walked, he had had – as they could not find him..The police searched for him for two days. The family searched for him for years.

Two years later his glasses and a slipper were found in a different direction than they had focused their search. He had apparently stumbled and fallen, and then he had died from the elements and his inability due to Alzheimer’s to save himself.

The irony is that had he been a missing child, there could have been an Amber Alert and more people brought into the search.

How do you feel about this – it may have saved this man’s life.

The next day at the conference, I recounted this true and very disturbing story in hope of Changing the Face of Dementia. Please let me know what you think. Thank you!

Jane Snyder – Let’s Solve It . . . Together!

We all have voices in our mind that tell us that we are hungry, tired or need the bathroom – - – the most basic of  human needs. What happens to those living with Alzheimer’s or dementia? Are those voices silent?

Often people with Alzheimer’s or dementia are verbally silent. Is it the loss of words, fear of using the wrong words, deterioration of the brain, or a combination?

Rarely do we think about the silence of the mind. We can cope with the lack of words. After caring for someone for so long we know them and like to feel we know what they need or what they are thinking. But, what about the silence in their mind?

Is it peaceful? Is it torture?

My mother was silent for long periods of time. Sometimes it seemed days or weeks. I worked hard to find ways to bring out her voice.

One way to break the silence is through therapeutic caregiving techniques like Puzzle with Me.

My mother lived and survived with Alzheimer’s for more years than any one in the family wants to admit. Many of those years were spent in denial by those that surrounded her. She however, knew something was not quite right. But she could not put her finger on it.

She became very good at hiding her symptoms and some off behavior. But as time passed, it was harder to fool the people she loved and those that loved her. Alzheimer’s took over and I think she gave in to what she could no longer conceal.

Except for a message quietly hidden until this week.

I discovered it during a visit to my father. These trips are difficult because we live halfway across the country from each other. He decided to live alone in the house I grew up in and the house my mother died in, and is 89 years old. He is a remarkable man and my best friend.

This past week I was in the house and discovered a beautiful hidden message inscribed and written by mother. It was clear by her handwriting that this was not a message left years ago but fairly recently in her quiet moments – she passed away in 2011. I was in her bathroom looking for makeup that I leave behind given the new airline restrictions. As I searched the drawer under remnants of cosmetics, in ink was a message scribbled on the bottom of the drawer.

In cursive but clearly readable from LJD, my mother…

Hello to all.
Love to all.
LJD

I like to think this was a way for her to reach out in brief moment of clarity. She happened to discover a pen in the drawer that may well have been used to mark her medicines from my father’s. I like to think that her message was left there for me or my father to find. I like to think at the end she wanted to say I am still here and love you, although this disease makes it impossible to say that everyday, so I will leave a note because today I can.

I hope by sharing this that we all will be reminded that it is the disease/Alzheimer’s seeks to destroy people, and that my mother was still there – and your loved one is still there – trapped in a state of confusion and disarray. Her message was simple, to the point and shall be imprinted in my thoughts longer than the makeup in the drawer.

Mother, I love you, too.

Jane Dewoskin Snyder
CEO and Founder
Puzzle with Me

The fact that you’re reading this blog post indicates that you probably live with or have lived with someone with Alzheimer’s disease. You know that the disease can be devastating – taking our loved one further and further away from us with each passing day. We cling to the hope that somehow the progression will be halted and we can reconnect to the person we know and love.

Our need to reconnect is what drove me to develop Puzzle with Me while my mother was drifting away with Alzheimer’s. The adult puzzles allowed us some wonderful moments of rediscovery while the disease battled to claim her. Those times meant so much to me, and it framed up my desire to communicate the importance of therapeutic caregiving.

While the disease works against us, we have as Alzheimer’s caregivers moments of victory that we can claim.

The work by Alzheimer’s Disease International, Alzheimer’s researchers across the globe, and all of you are helping us beat this thing. Let’s solve it . . . together.

Puzzle With Me™ is a therapeutic solution for caregivers of adults with Alzheimer’s and dementia. We have specially designed and now offer puzzles that caregivers use as tools to communicate and connect.

We’ve chosen images that will either spark a memory of a previous interest or can be used as conversation starters. The activity of putting a Puzzle With Me™ adult puzzle together affords the opportunity for both verbal and non-verbal communication, as well as, conversation and encouragement.

Our unique puzzle solutions are designed with images appealing and familiar to older adults: landmarks, hobbies, and pleasant scenes that will provide an opportunity for conversation. The puzzle pieces are large, and sturdy – ideal for keeping the activity focused on optimizing communications.

Hi, I’m Jane Snyder, a mother and daughter whose family has been deeply impacted by Alzheimer’s disease. My mother suffered with Alzheimer’s for many years. My father and I, like so many families, struggled to find the best ways to care for our loved one.

As my mother’s disease progressed, I found it more and more difficult to communicate and connect. After trying several activities I came upon the idea of helping her complete a puzzle with me. The challenge became finding a puzzle with an appropriate image, since all puzzles with fewer pieces had juvenile themes.

After extensive research and development, Puzzle With Me™ for adults was born! I’m pleased to offer these specially-designed adult puzzles to you as a form of therapeutic caregiving.

Are you walking to end Alzheimer’s this year? Puzzle with Me is!

Every community is once again providing the opportunity for you to walk, walk walk to raise money. Join Alzheimer’s Association Walk to End Alzheimer’s™, and unite in a movement to reclaim the future for millions.

We can solve it together! We can also raise awareness and funds to enhance Alzheimer care and support and advance critical research. The end of Alzheimer’s disease starts with each of us.

The Walk to End Alzheimer’s is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research. Since 1989, this all-age, all-ability walk has mobilized millions of people to join the fight against Alzheimer’s disease, raising more than $347 million for the cause.

Events are held annually in the fall in nearly 600 communities nationwide – including this one in my hometown of St. Louis. Click here.

Which one will you attend this year?

If you are or have been a caregiver, you know it comes with ups and downs. One thing for sure – caregivers are unsung heroes. It’s often a thankless job – and your personal conviction keeps you going. Thanks for keeping going!

When you’re caregiving an adult with Alzheimer’s or dementia, there are longer days than others. It requires so much patience to keep an even keel and push forward.

Developing Puzzle with Me while my own Mother was fading with Alzheimer’s was a great help for me – knowing that others would benefit from this caregiving solution.

What do you do to keep up your motivation level? What energy do you tap? We all find it from somewhere.

Thank you to all caregivers! Your efforts may often go unnoticed, but we know you’re out there, and your efforts are invaluable and highly appreciated!

Jane Snyder, founder of Puzzle with Me

Too often, patients and their family members are told by their doctors that the patient has been diagnosed with “a little bit of dementia.” They leave the doctor’s visit with a feeling of relief that at least they don’t have Alzheimer’s disease.

But what does that really mean, and what is the difference between Alzheimer’s and dementia?

One of the best articles on that topic is by Dr. Robert Stern. Check out his article at the Alzheimer’s Reading Room by clicking on this link.

This year’s event in Vancouver has been full of outstanding presentations, news, networking and inspiration. For more information and news please visit this page at AAIC 2012.

This year reports were released that linked gait changes and cognitive impairment, discussed how sleep disturbances are risk factors and gave long-term (three-year) stabilization data of Alzheimer’s disease symptoms with IVIG.

It’s not  too early to start planning for next year’s AAIC event in Boston July 13-18, 2013.

See you and Puzzle with Me there!