I am here because I SURVIVED taking care of my husband who BECAME ENGULFED IN A DESPICABLE AND INCURABLE DISEASE NAMED ALZHEIMER’S.

How many of you have only heard that AD effects the memory?  And when you think of memory, what do you think of?

It is difficult to describe what the person who has Alzheimer’s disease goes through, because that person doesn’t often understand or accept that diagnosis and most often is unable TO tell you.   

The first signs of trouble was not being able to remember a word he wanted to use.  We, of a certain age do that every day… that does not mean you have AD.  Then I noticed that he had difficulty with  his depth perception…in Italy with Spencer.

The intimately involved caretaker is not, CANNOT BE, prepared for everything that happens during the process of the disease.

The caretaker MUST BE able to continue to make the patient feel safe and happy.  Safe and Happy in a world that swirls out OF your imagination.

I cannot speak for a person who has the disease but I can Speak for a person who loved the person who had the disease and who watched the peeling away…… the scraping away ……of the ability to manage himself in the world.

I was the person who watched my best friend, my lover, my mentor, my personal counselor, my tennis partner, my painting partner, my dancing partner,  my soulmate the person who enriched my life and other lives succumb to Alzheimer's disease.

I became his translator.  He needed extra explanations of articles, then started to lose his ability to read, to write, to paint. 

I wanted to be with him every minute he was awake.  I did the best I could.  I helped him walk, because he refused a cane or a walker.  (Many people thought they could convince him to use a cane or walker. but they found my husband determined not to do that.) I was always PHYSICALLY close to him so I could catch him when he would fall ….. or try to figure out what he wanted to say OR WHAT HE NEEDED.

I helped him in and out of bed, in and out of the hot tub,  on and off the toilet, tried to get him to enjoy food that no longer had any flavor for him,  NOR DID he know what it was.  All of these events took a lot of time.  Once, it took 3 people three hours to get him back to bed.

I answered the same questions over and over and over and over again and tried not to become frustrated.

Taking care of him did become challenging and frustrating and frightening. I had to remind myself that it was his hippocampus… those amyloid Plaques, the tao tangles and the interrupted synapses that controlled him. I watched as he was enveloped into the world of the disease and my reaction was gut wrenching. I would try to relieve my pain by howling at the moon because of the gargantuan minute by minute disintegration of my husband’s brain.

And yet, somewhere in him, he wanted to do everything on his own.  And socially, when prompted he reacted what we might call normal for about 3 minutes.  WHEN ASKED A SIMPLE QUESTION SUCH AS:  Where do you live?  He would laugh, as if to say, what a silly question, of course I know, but he didn’t.

I showered quickly when he was napping, I would run to the bathroom, when I needed to go….., and would usually hear him calling , SHUGIE…..well, he called me Shugie.,   I would rush the flush. I continued to exercise because I knew I had to be strong for him. I thought I was strong, after all, we had lived through his stem cell transplant for Non Hodgkins Lymphoma 12 years before.

HOWEVER, EMOTIONALLY, SPIRITUALLY, PHYSICALLY.  The pressure took its toll.  The disease could have killed me, as it has killed other caregivers.  I had a near mental health breakdown, my body stopped functioning healthfully.  I could not stand or move without a GREAT DEAL OF PHYSICAL muscle PAIN ON MY RIGHT SIDE... although I continued to move... and help because I HAD too.  The stress gave me Irritable bowel syndrome, my toenails and fingernails stopped growing,  I was not seeing clearly because of macular changes, I WAS HIGHLY DISTRACTIBLE BECAUSE I HAD TO CONTINUOUSLY FIND WAYS TO CHANGE THE SUBJECT IF HE WOULD BECOME IRRITATED OR NOT ACCEPT WHAT WAS SAID and I did not take the time to go to a doctor for me. After my husband’s disease made its final assertion and he died.  I was strong enough and lucky enough to afford the help I needed to become healthy again.  Look at the difference.  (THE POSE)

Healing takes time.

I'm here TODAY BECAUSE I have healed to a certain degree and I was married to someone that the world respected and loved for his performances,  for the joy he brought to the masses, the personal integrity, kindness, gentleness brought to those who knew him. And his innate ability to bring humor to ANY situation, especially when the world seemed bleakest… even during his adventure into Alzheimer’s. 

I am happy to be able to use his name to help bring awareness for the need to help find a cure  and hopefully to find ways to help  caretakers who are intimately involved with a person who has AD.

Jim Grossman was one of the first to give me his card and tell me that he was affiliated with Alzheimer's disease and THAT I might want to contact a support group. Our doctor in San Diego also gave me the name of the Alzheimer's Association in San Diego. Support groups were  helpful.  The best thing I came away with is that the caregiver must give up what they expect from their loved one and accept what that person is on a minute to minute basis..  Arguing or being right will not lead to safe and happy.

It does take Pure Imagination and experiments to find a cure… and to help the caretakers to  deal with their reality. 

Thank you.

- Karen Boyer Wilder speaking to Caregivers Advocates.