My promise to Daddy

By Susan D. Harris

Daddy died in January. For eight long years he struggled with Alzheimer's. My mother and I struggled as well, myself the most. My mother being too disabled to get up the stairs (due to spinal stenosis) and necessarily sleeping downstairs, I became my father's primary caregiver.

Ever since I was little, whenever I walked into a room, Daddy would say, "That's my Susie!" When the day came when he wondered who I was ...well, it hits you right in the gut. We were lucky in that he remembered who we were much of the time. But there were so many other things, things no one could prepare you for, drastic personality changes that entailed having food thrown at you, being accused of stealing things, or dangerous things – like when I found he gathered every jackknife he'd ever owned and hid them under his pillow in case he felt threatened by Don Quixote's windmills.

As time passed, my own room became filled with things I'd confiscated from my father's bedroom – Pepto Bismol, Lysol disinfectant, deodorant, and other things he would liberally apply anywhere on his body. I'd seen him through his cataract surgery, two hernia operations, and cellulitis that led to bloody infections on his legs...and ailments I can't even remember now.

My father developed lung disease and was on oxygen. He didn't like it and I would often find his oxygen cord tied in large knots under his bed – knots he learned in Sea Scouts and the Navy. On two occasions he took a knife I'd given him for supper and cut his oxygen cord into tiny pieces. In short, every moment of my life became as exasperating as his.

I lost my job in 2012. It was a blessing in disguise as I realized my parents, my father especially, needed 24/7 care. At first I cashed in my entire 401k to support us, but that eventually ran out. My father's greatest fear was being placed in a nursing home, and since he had not been forward-looking with his finances, he would necessarily be at the mercy of the cheapest nursing home available. (After my father's lifelong career as a tool and die maker, my parents suffered unexpected financial crises in the '90's and never recovered.)

We survived with WWII VA caregiver benefits – something I discovered my father qualified for when he became housebound. Those proud stories of starting out in the Navy as an arterial gunnery instructor on North Island at the end of WWII had finally served him properly. Sadly, by the time the benefits came through, my father was too far gone to understand that his Navy service was helping us survive, decades after he'd been honorably discharged. He would have been proud.

He got to stay home almost until the last when, for reasons I'll never know, he simply fell out of bed twice. The first time I was able to yank his long, strong, 6 ft. body back into bed. He was up and walking again in no time. The second fall was impossible. He pleaded with me not to call an ambulance, but I told him I had no choice. Off he went to the hospital...to rehab...back to the hospital...and ultimately left alone for long periods of time in an understaffed hospital to deteriorate. I was there every day, but couldn't be there every minute. A month passed.

Some days he was lucid and we would talk: "Dad, we never understood why you've had the entire soundtrack to Carmen since you were young. Did someone introduce you to the music?"

"No, I just heard it and liked it and bought the albums." After all those years, the mystery was solved with a simple answer.

I'd had one call that he was fading and I should come to the hospital ASAP. When I got there he was in ICU, on a BiPAP machine for pneumonia. His eyes were alert and he looked at me and squeezed my hand hard as if to say, "It's okay, I'm still here."

The last call came late one night just after I'd left the hospital. My tire pressure was low and I'd stopped at 4 air pumps – all of which were surreally broken. The fifth one was working when my cell phone rang. "Your father's vitals are falling, the team is in the room, and you'd better come quickly." There was no time to get mom.

I drove carefully because Dad would want me too. "There's never anything so important it's worth dying in a crash for, always remember to take your time;" he'd taught me that when I was 16. When I got there the attending resident was blathering about vital signs until I interrupted, "Is he gone?!" "Yes, he's gone," she said. I pushed passed her and pulled back the curtain. Tubes were disconnected and he lay there looking calm and peaceful. The nurses had tucked his large stuffed Snoopy in bed next to him – I suppose they thought it would be cute, but to me it was a horrific scene as if even Snoopy had died.

I took his hand and squeezed, but this time he didn't squeeze back. I shook him, called to him, and checked his pulses. I kissed his forehead and told him I loved him and it wouldn't be long until mom and I were with him. I took the Bible and read Psalm 23. The resident on duty said there were no clergy on hand and would I like her to say a Christian prayer? She did.

I was given his little bag of toys – Daddy loved toys all his life and made many himself. It was a lifelong point of pride that he boasted he was born the same year as Mickey Mouse. I took his Snoopy, and various other belongings – everything that mattered squashed into a little plastic bag.

There was no one outside the hospital in the pitch dark, cold night. My knees were wobbly and I vomited walking down the sidewalk. For the first time in my life, I wished someone would rush over and ask, "Ma'am, are you okay? Can I help you?" There was nothing but a silent brisk wind.

The Navy came and played taps at his funeral and presented my mother with the flag. We couldn't afford a gravestone, but someday I hope to have one large enough for mom's name too...when that sad day comes.

My parents were married 62 years. My mother has lost her one true love and her best friend; but in a way she'd lost him years before.

In one of my father's last lucid moments he told me, "You've done all you could for me and I appreciate it. You do what you have to do from now on. Just make sure you take care of Mama (my mother). She's gonna need a lot of looking after when I'm gone. If you take care of that Mama, you'll know you've done right by me."

When Daddy died the VA Caregiver money stopped immediately. I applied for VA Widow's pension and Aid & Assistance help for mom. She now needs 24/7 assistance herself, and being sharp as a tack to boot, I won't be putting her in a nursing home either.

I was initially told the wait wouldn't be so long – the average wait was three months. Then I called the VA national hotline and was told that widow benefits filed in February wouldn't be processed until at least December. (There is a belief among some that they wait for the elderly to die so they don't have to pay the benefits. I wonder.) We only have Daddy's social security check, so until the VA funds come through, we struggle to keep the lights on and get food at the Food Bank. The cable TV will have to go, my mother's only amusement and distraction.

As for Daddy, it was indeed the long goodbye; I know it was time for him to go, but that didn't make it any easier. The Alzheimer's Association having a webpage with "reading resources" that tell caregiver's to "make time for yourselves" doesn't even touch the tip of the iceberg.

I know there are so many other veterans suffering too, along with their children or spouses. I think of the maimed in battle; I think of their caregivers. Caregivers who, like me, sacrifice everything they have – even going through bankruptcy just as I did – to save my home where I could care for my loved ones. Here they were safe with their gardens, their beloved dog, and home-cooked meals they knew and thrived on.

I would have liked Daddy to die at home in his own bed, instead of surrounded by strangers in a cold, sterile environment. Everyone deserves to stay home if they can. I think of all the other veterans, languishing in hospitals, nursing homes and hospice care across the country.

What becomes of a country with a Veterans Administration that takes a year, often longer, to process claims while people suffer and die? It shouldn't be this way.

This is Daddy's first Father's Day in heaven with his true Heavenly Father – and it's a far, far better place he's gone than the world I'm seeing around me today. I only hope I can keep my promise to Daddy to take care of Mom to the end, like I was able to do for him.

May God Bless all father's this Father's Day, and all caregivers who give so much.

Susan D. Harris can be reached at www.susandharris.com . She is currently published in the July issue of America's Civil War.

© Susan D. Harris