Today’s post is a little long winded. My apologies - I just don’t know how to shorten my story today. I hope your patience will be rewarded.

This is my 85 year old dad. By the age of 40 in his career as an Army officer he’d been in battle in 3 wars; World War II, Korea and Viet Nam. He was never physically wounded but he saw a lot of his friends die. He’s seen the best and worst of humanity and always managed to keep things in perspective and love & take care of his family.

My black dog used to remind me that by ____ (fill in the blank) age my dad had been through ___ (fill it in again) wars and other experiences and that I could live to be 100 and I wouldn’t have achieved half as much. And by the way, why wasn’t I as strong and decisive as dad? Black dogs love to compare you to others and it’s never in a good way. The information you need for a truly objective comparison and couldn’t possibly know on your own - the black dog fills in with its very negative imagination.

Please take the effort to look at what you tell yourself when you start to compare yourself and your situation to others. It’s very easy to see a black cloud (in the shape of a dog no doubt!) hanging over you but we don’t know what black cloud the other person may have in their life. You and your situation are different. Not better or worse, just different.

Last year we had to move my mom and dad to a nursing facility due to the Alzheimer’s they both had. They’d been living in their home and covering for each other quite well. The familiarity of their surroundings and routines helped but it could only help so long.

They were interviewed by a nurse and social worker at the home prior to moving. They determined that they could actually stay in an assisted living apartment as dad was much healthier than mom and there would be nursing and other staff there to aid them in taking care of themselves; cuing them to do the things they could still do and helping them to do the things they couldn’t.

My brothers, sister & her husband and I all took a day off and moved them and their belongings to a nice apartment. The apartment was much smaller than their home but we managed to move the most memorable of their belongings - the pictures, furniture and other things they’d acquired from their travels or that had been handed down through the family, so that their new home had a familiar look and feel to the old home they’d left.

When we brought them in and showed them around, they thought it was great. We had a glass of wine to celebrate and sat around & talked for a while. The nursing staff came in and introduced themselves and everything seemed like a ‘Goldilocks’ moment - just right. Mom and dad were happy and we could relax knowing that they’d be cared for and we wouldn’t have to worry about their safety.

What’s that saying about “If it seems too good to be true…”? Within 2 days both mom and dad had spiraled out of control. Mom was very weak and could hardly stand up. Dad was becoming very agitated and confronted the staff when they’d try to get him to do something. They both ended up in the hospital. Mom in the E.R. and dad in the psych. wing getting a senior diagnostic evaluation. I still have the notes my dad wrote where it sounds like he thought he was being held against his will and would they please “let my family and country know where I am?”

The final outcome was mom and dad both had to be moved out of their assisted living apartment and into the nursing home. The only room that was available was a small room that looked like one you’d find in a hospital. This is what my dad was always afraid of and never wanted.

In some ways Alzheimer’s is worse than death as there comes a point in the progression of the disease where that person is gone. They’ve died but you can’t bury them. It’s difficult to think of anything positive about Alzheimer’s but despite the ravages & extreme ugliness of the disease there were indeed some beautiful things that came out of it.

Mom rang the doorbell when she was brought to our house for a family dinner. When I answered it she looked at me, held her hand out for me to shake and asked with a smile, “Who are you?” Playing along I shook her hand and replied, “I’m John. Who are you?” What had started as a light-hearted moment turned to panic in her eyes as she struggled to find the answer. She didn’t know who she was. No answer came. She was stuck.

Then the flash of panic disappeared, her face softened and she came back, shrugged her shoulders & laughed, “I don’t know!” Mom’s ability to accept her illness with humor was amazing.

I had grown up Catholic but have always been drawn towards Buddhism. For a while I attended services at a local Zen Center. Zen is very simple, “Who are you?” Mom’s response struck a very deep chord within me. She didn’t know who she was and I didn’t know who I was either. We were both stuck. Mom had accepted her disease but I hadn’t mine.

I was talking to one of the teachers at the Zen Center once and he held his open hand up until it was inches from his face and said whatever it is we need to work on in our life is always right in front of us. Just open your eyes and see.

Alzheimer’s and depression are always in your face. They interfere with relationships, eat away at your ability to take care of yourself and make sound judgements. They like to remind you of the impermanence of life, of your memories, of your ability to know “Who are you?” The biggest difference is that you can control and get better with depression. You’re not so fortunate with Alzheimer’s.

At the same time as things fell apart with my parents, my sister’s oldest daughter was in the hospital having her second baby and my best friend was dying of cancer. My niece had problems with childbirth and her baby had to be life-flighted to a children’s hospital in another city where they had to get her healthy enough to withstand surgery. Life was overwhelming.

When we’d visit mom and dad in the nursing home, mom would be in a great mood but dad was very angry and confused. Dad didn’t know why he was there and mom didn’t seem to care. No one wanted to tell them the truth. During one visit when everyone was there, dad kept asking what the hell was going on. There was only an awkward silence in response. I think that no matter how old & infirm your parents are, when they get angry you feel like you’re 5 years old again. I finally thought this is crazy. Why not be straight with him and tell him? Don’t we owe him that much? So I said, “Dad, you and mom both have Alzheimer’s and can’t stay by yourself anymore.”

It wasn’t what he wanted to hear but at least it was an answer. It seemed to satisfy him to some extent. It may seem like a small thing - just one sentence - but it was a moment of clarity for me.

It’s easy to minimize our accomplishments and feel like we’re not doing anything or if we are, that they always fall short somehow. Be patient with yourself and learn to appreciate the smallest things that you do. Maybe you held the door for someone or said a kind word to another. That’s enough. Give yourself a pat on the back.

I’m the youngest son and never thought I’d have the strength to step up to the plate in such a difficult situation and say what needed to be said. My brothers and sister were the older and wiser ones growing up. Now I felt as though I was becoming the parent to my parents. It didn’t feel comfortable or natural but I was determined to help as best I could.

Over the next year mom and dad deteriorated. They did get to meet their newest great-grand daughter who made it through her hospital stay. Some visits were pleasant but many were very unpleasant.

They would constantly ask the same questions over and over and I would answer over and over. At first I thought with enough repetition it would stick and they’d remember, but they never did. Sometimes they became angry and said very hateful and mean things. At those times I learned to see that it was the disease talking, not them. At other times they were more accepting.

Patience wasn’t just a virtue, it was a necessity. Patience with my parents, with the disease and most of all with myself as I struggled with guilt. These are my parents. I love them and enjoy being with them - so why did I want to get up and run away when things got ugly or not even want to visit them?

My sister, her husband and I visited our folks a lot and in the process became much closer than we’d ever been before. We leaned on each other a lot and in the process our love for our family grew. We learned that doing the right thing isn’t easy but love enables us to do it anyway.

On the last Friday in April I had taken the day off from work so I could be screened for colon cancer. My best friend had died from his cancer. My wife had just taken me back home and I was still groggy from the anesthesia when my sister called crying.

Mom and dad had gone to breakfast that morning and afterwards went back to their room where mom took a nap and never woke up. She always said she wanted to die in her sleep so at least she passed peacefully.

I just feel so bad for my dad. They would have been married for 64 years in another month. When we got to the nursing home mom was still laying in her bed, she looked like she was asleep. Dad was sitting on his bed facing mom and just staring into space. When he saw us he broke down and said, “I just don’t understand. I wasn’t able to say goodbye. I sure am going to miss her.” It was the most heart breaking thing I’ve ever seen.

I’m glad my family is close and we all pulled together and supported each other. Mom’s funeral was beautiful; she had all the music, songs and prayers that she’d said she wanted at her funeral. She said she wanted everyone to be ‘appropriately sad’ too - we were that and more. My mom was a very special person, very funny and very caring. She really loved her family and I sure am going to miss her. Her faith was very strong and I take comfort in knowing she’s with our lord now.

So how has all this affected my depression? It’s taught me to be there for others in need including myself. It taught me that the courage in the face of a disease means not giving in - that there is a difference between acceptance and surrender. It’s taught me that no matter how painful and difficult life can be, doing the right thing is still worth doing.

Perhaps the most important thing I learned was from my dad. At the dinner after mom’s funeral he was asking my niece if she had someone she loved and who loved her. He told her, “It’s easy, you just do it!”

Loosing my mom hurts but I’m a little less afraid of death (& life) now.

You can view a memorial video for my mother by clicking here.

This entry was posted on Monday, September 3rd, 2007 at 7:46 am and is filed under Alzheimer's, Zen, anxiety, death, family, forgiveness, grieving.