When you lose a family member, well-meaning people usually say that things will get easier as time goes on.
But I don’t think that’s entirely true for everyone. Certainly, time marches on. But how one reacts to a death of a loved one, how they process their grief, well, that’s really a very individual process. I’m sure there are plenty of statistics and surveys out there that say generally speaking, people’s grief lessens after x amount of time. I think most of us know that when it gets personal, stats go out the window.
Mom and Dad in Ruidoso.
I’ve been thinking a lot about Dad lately, and that is understandable. The one year anniversary of his death was December 20th. Then it was the holidays. Certainly I have not been sitting curled up in a ball crying my eyes out with grief, but the pain still ripples through my heart. The guilt over what I would have, should have done differently still is something I’m working through.
Mom also remains grief-stricken, so I have to deal with that as well. On New Year’s Eve, she found a copy of the message she wrote in the 40th anniversary card she gave to Dad, the one she had cremated with him. While everyone else was ringing in the new year, Mom was grieving.
Tonight, she broke down again, letting me know she tells Dad every day that she loves him. Her message is always the same. She misses Dad dearly, but the way he was before Alzheimer’s. She could not wish him back the way he became with dementia.
So for some people, grieving the loss of a loved one does become easier. For others, it may change shape and form, but it is still a pain buried deep within the heart.
I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.
I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.
When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.
As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.
We need to encourage more of these proactive care centers in our communities.
Today I had to go grocery shopping for the first time since I returned from being with Mom in New Mexico. It’s a chore I don’t enjoy, as it aggravates my vertigo which can send me into mini panic attacks. I can’t wait to exit back into the fresh air (though today it was quite chilly.)
I can’t pass the magazine aisle without thinking about Dad, and how that was his safe place, where he would kill an hour flipping through the news magazines while Mom and I did the family grocery shopping.
That was before the Alzheimer’s. Once his mind began to fail, Dad lost all of his safe places. Reading went from Dad’s most enjoyable hobby to a foreign concept. Soon he was left with nothing but the ability to walk, to wander aimlessly with no destination and no concept of home.
Thinking about mundane tasks from a dementia perspective makes one realize that they are indeed fortunate to be able to go grocery shopping and run other pesky errands with their mind fully intact. Sometimes we truly don’t appreciate all of the little things we do to keep ourselves alive.
Mom is still doing well and is able to get out on her own to be around people, which is important to her to stave off depression. She still misses Dad immensely, and being so ill over the past six months has made the loss of Dad even more difficult.
She recently went to Subway, one of her favorite fast food places. Every time she goes, she has to tell me the story of how Subway played a key role in her hitting a lottery jackpot.
It was my parents’ anniversary, and Dad was in the early stages of Alzheimer’s. He was becoming more of a homebody as the disease began to progress, as having to place orders and pay for items confused him and stressed him out. He didn’t want to go out that night, but Mom insisted. And the only way she was able to drag him out of his burgundy chair and away from a classic movie on TV was by suggesting they go to Subway. Dad loved their meatball subs.
He relented, and well, the rest is history. Mom nabbed a winning lottery ticket and Dad enjoyed his hot and tasty meatball sub sandwich. Not exactly a romantic anniversary dinner, but definitely a memorable one!
Usually Mom doesn’t order the meatball sub, as she prefers something lighter like tuna salad. But she must have been feeling extra nostalgic the other day, as she said she ordered the meatball sub for herself.
I finally made it back home. If I’ve learned anything over the past year or so, it’s not to take anything for granted.
I’ve always been a homebody, but after seeing Dad separated from his home in the last year of his life due to Alzheimer’s, I have a renewed sense of how important home and family and friends really are in this world.
We don’t know when disaster will strike and take us away from our creature comforts.
That lesson learned is better than any worldly possession that can be wrapped under a tree.
It’s hard for me to believe that it has been one whole year since Dad died. So much has happened, with Mom being ill for most of this year. Through it all, I’ve thought about Dad each and every day.
Today I remembered Dad by walking along his favorite walking trail and visiting the local library, his favorite place. I will be making a donation to the library in his honor. It was an absolutely gorgeous day, and such a stark contrast to the hideous weather yesterday. Today, the skies were as blue as they could be, the sun was shining bright, and the winds were calm.
Dad and I at the assisted living facility, March 2011.
I started The Memories Project blog at the beginning of 2012 as my way to remember my father, to record memories and work through my grief. It has been a wonderful experience. From the NPR interview to all of the wonderful bloggers I have met that I otherwise would never have known, it has been truly rewarding and enlightening.
Today, I added an entry on Cowbird to mark this anniversary. It includes some priceless audio of my father singing to me as a baby. The recording is one of my most precious possessions.
While I haven’t been able to dedicate as much time to Alzheimer’s awareness as I would have liked this year, I hope to engage in more activities in 2013.
Thanks to all of you who take the time to read about someone you’ve never met. Dad would be so proud to know that he is making a positive difference in the world.
It was a brutal, ugly weather day where my mom lives. The wind howled like a banshee all through the night and into the day. The wind was sustained at 40 mph, and geared up to 60 mph gusts at times. It left me feeling unsettled and on edge all day long. I set in the living room and in the chair that Dad spent most of his time in when he still lived at home. I watched the thin trees take a beating. They bent, but did not break with the vicious wind gusts. It was a miracle of nature to me.
At one point, blowing snow whipped its way through the sky.
Even though I avoided going out in the windy weather, I felt like the wind symbolized the battering my family has taken over the last year. And the howling made me think back to my Dad’s nightmares, and the sounds I would hear at the nursing home Dad spent the last year of his life in.
Perhaps we were lucky that Dad mainly became mute as his Alzheimer’s progressed, and there were no verbal tirades or helpless cries that some families have to endure.
Those howls and moans of souls trapped by the cruel disease of Alzheimer’s. It is a sound one can never forget.
I read a moving blog post today about someone with Alzheimer’s who pleasantly surprised their family caregiver with a rare moment of lucidity. They were able to express their love verbally before Alzheimer’s moved back in and took the light out of their eyes, returning them to a glassy, blank stare.
For most of us, these lucid moments are few and far between.
This made me think about the last lucid interactions I had with my father. He was at the point where he was barely able to verbally communicate. He would sometimes be able to utter a few words that made sense, but most of the time, he carried that sad, faraway look in his eyes. But I remember that moment so clearly in the hospital room, when Dad’s eyes lit up with recognition while I was holding his hand.
“Oh, there you are,” he said, as if startled by this temporary retreat into reality.
“At first I couldn’t see you but now I can,” Dad said with a wan smile.
I knew that was the moment to say what was burning in my heart. “I love you Dad,” I said, slowly, clearly.
“I know you do,” Dad said. Then he began to drift away from me, back into the isolating world of Alzheimer’s.
But it is the moment of love that I remember the most.
I read an interesting study today that suggested there may be a connection between loneliness and Alzheimer’s. What was most interesting was that it was those who felt lonely versus those who lived alone but didn’t express feelings of loneliness that had a higher incidence of Alzheimer’s.
It was a surprising result to the researchers. I’ve read numerous studies about social isolation leading to everything from dementia to depression. I wonder if these studies have some inbuilt bias towards extroverted people. There are some people who need constant company or they feel lonely; others can interact socially with people once or twice a week and be perfectly happy.
I’m not sure if Dad felt lonely before Alzheimer’s set in. Dad certainly had a passion for “alone time” activities like reading. He also had a solitary job as a security guard for many years. So like me, he was comfortable being alone and entertaining himself. Did he yearn for more socializing? That I will never know.
But what is clear to me is that once Alzheimer’s took hold of my father, he was whisked away into an isolating world, where we really could no longer connect with him in a meaningful way. And I saw that same isolation play out on the faces of every patient in the dementia ward of the residential facility where my dad spent the last year of his life. I remember so many residents reaching out, touching my arm, trying to communicate with me, hoping to make some kind of human connection. I often felt like I let them down when they shuffled away after an awkward, confusing exchange.
I hope there are more studies investigating social isolation and dementia, and I hope they take into account that both introverts and extroverts exist, and that the definition of loneliness is different for every human being.
I was reading this blog post today about gift ideas for loved ones with dementia. The holiday season can be awkward when you are trying to accommodate those with Alzheimer’s and dementia. I think often, we as family members go to one extreme or another. We either bombard the poor souls or we pretend they don’t exist. As usual, the solution is somewhere in the middle.
First of all, there is no “one size fits all” solution. Each person with dementia will react to the holidays in a different way. For example, Dad was never sentimental about the holidays and his interest didn’t change once dementia took hold. I did buy him a personalized New York Times edition from his birthday and birth year once he was in about the mid-stages of Alzheimer’s. I wish I had bought it for him sooner. I believe he was able to look at the pictures but I believe his reading ability was limited by that point. It was a gift I had meant to buy years earlier, for Dad loved newspapers and history.
So one has to try to relate to their family member with dementia as much as possible. I think generally speaking, low-key, small gatherings are best, because they don’t stress out a dementia sufferer with too many unfamiliar faces and too much commotion. But again, I heard a story recently about a woman who suffered from dementia and who had loved to cook the big holiday meal before dementia took over.
So what did the large, extended family do? They each made a dish from one of her recipes, and pretended that she made it herself. The little old lady took her place at the head of the table, wiped her brow and exclaimed how tired she was from all of that cooking before digging in. The new tradition went on until she passed away.
Sometimes gifts don’t come wrapped in paper and bows. They are recreating memories of a loved one and sharing in the joy of those happy times.