An Alzheimer’s Love Letter I wish I had sent to my Dad

If I’d have known then what I know now, I’d have sent this Alzheimer’s Love Letter to my Dad.

 

Dear Dad,

Thank you for sharing the news that Mom has been diagnosed with Alzheimer’s. This means that today Mom is the best she will ever be. We should enjoy every moment we have together.
We also need to prepare for what is ahead.

While Alzheimer’s is different in each person, there are common patterns that families with a Loved One with Alzheimer’s share.

Since we would all like Mom to live at home as long as possible, it means that every member of the family will need to lend a hand in Mom’s care. And we will need a lot of outside help too.

The scariest thing I’ve heard is that Alzheimer’s Caregivers usually pass before their Loved One with the disease. The strain of caregiving coupled with normal aging is significant. Given your excellent health today, I agree this sounds unlikely to happen to us.  Yet I’ve heard from adult children who’ve seen their parents go through it. They say that Alzheimer’s care-needs are like an avalanche leaving the Caregiver buried at the bottom.

Research shows that whatever the caregiver’s plan is at the beginning, at some point during Alzheimer’s, an adult daughter or daughter-in-law shoulders some caregiving duties. I know you plan to care for Mom to the end by yourself.  What I’m saying is that since adult children often end up providing care, I want you to keep me in the loop from the start.

Please share Mom’s behaviors as they change.  Keep me in the loop as you take on new chores.  Different from hearing it as complaining, I promise to hear it as an honest barometer of the progress of Mom’s Alzheimer’s.

Let’s start with little steps.  I need to have complete medical histories for you and Mom, and the names and addresses of your doctors.  I need you to sign HIPPA releases allowing me access to your medical records.

Something else I’ve learned.  This is a biggie.  I’ve been advised that since I live two-hours from you, it’s going to be easy for me to be in denial about Mom’s condition. Apparently, the less I see Mom, the less in-tune I’ll be with the progression of her disease.  It will be very easy for me to imagine that the disease is yet to progress.  Especially if I hear very little from you.
Help me make career and life choices for the next decade with complete and current information about you and Mom.

This carries a real risk. If I’m in denial, I may do something counterproductive.  I may take on a work role that requires more time in the office, or more travel time away from you.  I may say yes to an overseas assignment. Each and every one of these times, I need to remember that in the decade to come, I’ll appreciate every aspect of my life that makes me available to you. My flexible schedule. Money in the bank. My work benefits.

Consider the alternative. I could wait for a crisis, then jump in with both feet.  At that point my learning curve will be so steep it will be like the anvil that falls on Wyle E. Coyote’s head in the old Road Runner cartoons.  I’ll be laying on the ground, with stars and bird spinning over my head just when you are most ready to accept my help.

There is one goal we can both aim for.  If you and I do this right, you can survive Mom’s Alzheimer’s.   That’s what I want. I hope it’s what you want too.

Can you support me in these?

Other big picture things we need to address:

  • Updating your wills
  • Putting a Health-care Power of Attorney in place for you both
  • Reviewing your Long-Term-Care Insurance coverage

Next week, we can start talking about you two living closer to me.

I love you Dad,

Barbara

Invite visitors two at a time

YOUR PARENTS, THEIR ALZHEIMER’S AND THEIR FRIENDS


“We had a great day yesterday.”

I can literally hear Dad’s smile over the telephone.

 “Kay and Jo came over,” he continued. “Kay visited with Mom.  They laughed and laughed.”

“And Jo?” I ask.

“Jo and I worked in my office, getting the prescription refills figured out.”

This last comment pokes at my curiosity. “What was up with the refills?”

“Oh nothing,” he replies.  “I just have so many bottles of some of these medicines in the closet.  I mean, why on earth would I need three months of Omeprazole at one time?  That’s nuts.  Anyway, Jo talked to the pharmacy and helped me get it all straightened out.”

“Well,” I begin, intending to explain (yet again) the 90-day refill policy used by today’s mail-order pharmacies.  Then I stop myself for a breath.  I remind myself that Dad sounds happy.  Relieved.  Calm.

I change directions. “So is there anything else I can do to help with that?”

“Nope, we’re all set now.  Oh, and best of all, they brought lunch and even left me with some dinners for the week!”

Mom and Dad’s friends are both nurses.  They have a lot of history with my parents, and a lot of experience helping people traverse the Alzheimer’s journey.  This was another chance for me to watch and learn from their expertise.  To witness how two strategic visitors at one time can “divide and conquer,” providing an opportunity for the Alzheimer’s Caregiver to get something else important done.

Have you tried the “two-on-two match-up” approach to create some uniquely powerful support for both your Alzheimer’s Loved One and the Alzheimer’s Caregiver?  If not, who in their life (or yours) could you recruit onto this all-important special team?

What a stressed caregiver sounds like

ALZHEIMER’S, YOUR PARENTS AND THEIR STRESS

“Give me a break,” Dad snaps.  “Do you think we keep this place a pigsty?” It is now 9pm and Mom has gone to bed. Dad’s been up since 4am.  He’s toast.

“Of course not,” I respond. “I seriously just want to know what you think about Diane coming up to put all your important papers in a fireproof box.”

“And just why would we need Diane to get our papers together? Do you think we are going to lose them or something?” Dad barks back.

Clearly, Diane’s well-intentioned offer has insulted Dad.  I take a deep breath, and then try a new approach.

“Last month, Diane moved her important papers to a fireproof box.  So she thought it would be nice to do the same thing for your papers.”

Dad pauses before replying. “I’ll have to ask your mother.  Anyway, why would she need to come all the way here do such a simple thing? I manage this place on my own just fine, you know.”

“The box is a gift Dad. A present,” I explain.  “And the visit is just because she loves you. It’s just that simple.  We love you, Dad.”

In these moments, I know that Alzheimer’s caregiving leaves Dad sleep-deprived, needing more patience, and yearning for even the smallest hint that the disease might be slowing down.  Still, it surprises me every time he comes back at me.  After all, I’m in touch. I’m trying. I care.

In time, I realize that, as Dad grows his Caregiver skills on this Alzheimer’s journey, I have an opportunity to grow my compassion and forgiveness skills. Plus patience, which has been on my growth list for years. 

We both have our work cut out for us.

Do you find your parent’s Alzheimer’s journey giving you opportunities to grow in surprising ways?  If so, how are you responding to these growth opportunities?