The Next Leg

I have often referred to taking care of my elderly mother as a journey. One I am sharing with her as she travels deeper into dementia and the final stage of her life. It has been a bittersweet journey. One filled with great joy and great sadness.

She is not exhibiting any behavior that is out of the norm. And one of the lessons I have learned is that dementia can be very predictable. Loss of short-term memory. Confusion in unfamiliar surroundings. Anxiety over the loss of both mental and physical abilities.

The longer I have traveled this road, the easier it has been to define the patterns of decline. Typically, we roll merrily along at status quo, then we slam dunk into a downward spiral where her mental abilities plunge. Then we hit a plateau and roll merrily along again. Then we repeat the cycle.

Over the past two months my mother has been in a severe downward spiral which has taken me to a much higher level of concern. Her short-term memory is almost completely shot. Her anxiety level is increasing at an alarming rate. This combo sets her into a repetitive cycle of activity, because she can no longer retain any memory of a recent activity.

When she pings the nurses at the assisted living facility, asking them repeatedly throughout the day for her medications…and they reassure her, once again, that she has already received them…that is par for their course. Because the nursing staff considers responding to my mother and the other residents, who are also exhibiting the same symptoms of dementia, as simply a part of their daily duties. No worries.

But when my mother swears she hears a fan whirring in her room, or a buzzing sound or a clicking noise coming from the thermostat which regulates her heating and air conditioning…and she keeps insisting that the maintenance staff come fix it…this is not par for their course. Because the maintenance staff does not consider responding to four calls a day from my mother…simply to reassure her that all is the same as it was two hours ago…as a normal function in the course of their normal day.

So, how do I fix this? How do I find a solution? What can I do? The answer is simple: nothing.

There is no magic button to push to make this go away. While there are medications available to alleviate her anxiety, the side affects may far outweigh any benefits. So, once again I find myself swirling around in this downward spiral, watching my mother spin further and further away. Only now, she is making it difficult for the folks who are caring for her. And that is a problem and one that does need to be addressed. So, I am once again relying on the professionals…working with our family doctor and the head nurse at my mother’s facility, to determine where we go from here.

I am also relying on my personal support staff. Friends who have already traveled this road with their parents. Gal pals who have already taken this journey with their mothers and come to the end of their road. Their reassurance that I am still on track and heading in the right direction has been comforting.

I know I am doing all that I can. I know this stage in my journey is par for my course. And I know that my road ahead will only get bumpier.

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In Sympathy

One week ago today, my friend’s mother passed away quietly and peacefully at her home, surrounded by family. She was 89 years young. She had suffered a mild heart attack a few weeks prior, and was unable to recover. My friend comes from a large family and they honored and celebrated her mother’s life in grand style at the funeral.

Tomorrow marks the one-year anniversary of the passing of my oldest and dearest gal pal’s mother. When I spoke with my friend not long ago, she said she was surprised at how teary-eyed she has been at the approach of this day. She has already experienced many of her “firsts” this past year. First birthday, first Thanksgiving, first Mother’s Day. But for some reason, this “first” was hitting her harder.

I told my friend there is no specified timeline for grieving the loss of a loved one, and especially not the loss of a beloved parent. And I shared an experience with her that I had almost a year to the day after my father had passed, when I was a young 20-something, setting out to conquer the world.

Every day my father would call me at my office and tell me the most campiest and silliest and stupidest of jokes. But they always made me laugh, and I know that was his intent. And after he passed, every day when my office phone would ring, my first thought was that it could be my dad. My second thought was that it could no longer be, and a sense of sadness would pass over me.

Then one day as I was driving home from work, I suddenly realized that every time my phone had rung that day, I had not expected it to be my father. And within seconds, the tears were streaming down my face, and I had to pull off the road because I could not see to drive. As I sat along the shoulder of the highway, I came to the understanding that it was not the loss of my father that was prompting my tears.

That had been the first day that I had not thought of my dad. The first day without that familiar sadness for my father’s passing. The first day that I had laughed and joked with my co-workers without any feeling of remorse. And I suddenly realized I was not grieving the loss of my father. I was grieving the loss of my grief.

Sounds a little odd-ducky, I know. But grief can become like a comforting, warm blanket we snuggle up in to keep out the chill of a winter’s night. It can become so much a part of us, that we forget we can let it go.

As I told my friend, there truly is no specified timeline for grief. We all handle our grief in our own way. And when the time is right for us, we can let it go. And continue with our lives, remembering all the good we shared with our loved one, knowing that they will always remain in our hearts.

The Call

Three words that are music to your ears: “Your mother’s fine.” One word that can make your heart skip a beat: “But…”

In the soon-to-be-two-years since my elderly mother has moved into assisted living, I have learned not to panic when the phone rings and I see the caller ID for the facility where she is now living. Most often it is an administrative call regarding a change in the billing procedures. Or a housekeeping call regarding a laundry issue. Or a social call with a personal invitation to Family Day at the Villa.

So when the phone rang a few days ago, late in the afternoon as I was finishing up my work day and I saw the caller ID for the Villa, I did not immediately think there was a problem. Until the voice on the other end of the line identified herself as one of the nursing staff. And she said, “Your mother has fallen, but she has not been admitted to the hospital.”

WHAT???

“She fell forward onto her hands and knees as she was getting up from her bed. I was bringing her meds to her before dinner and when I walked into her room she was on the floor. I helped her up and she seems fine.”

HUH???

“She was laughing about it, actually. And yes, she walked down to the dining room for dinner without any problem and does not seem to be in any discomfort. And yes, we will keep an extra eye on her tonight. And again tomorrow morning and throughout the day.”

YA THINK???

“I told her she almost gave me a heart attack when I walked into her room and saw her on the floor. I asked her what happened, and she said was sitting on her bed putting on her shoes and when she went to stand up, her foot caught the corner of the bedspread and she fell forward. She said the only thing that she hurt was her dignity.”

JEEZ-LA-WEEZ!!!

When I called the next morning to get the nursing report, I was once again reassured by my gal pal, the head nurse, that my mother was indeed just fine. She had gone down to the dining room for breakfast without any problem. She did have a red mark on her one knee, but there was no bruising. She was not in any discomfort. But they would continue to keep an extra eye on her.

When I saw my mother the next day, I was amazed and relieved to see that she really was just fine. Her eyes were bright, her smile was wide and her spirits were good. As I put away the clean laundry I had brought, and took inventory of her personal care items, we had a nice little chat about recent family events and the latest antics of my two puppies. As our visit was ending, I asked her about the fall. She showed me her knee, and I’ll be darn if there wasn’t nothing more than a small red mark.

I am thankful that this little episode had a happy ending. Because I know the day will come when I will get a call and she won’t be fine. But I can’t dwell on that day coming. Because that will send me screaming into a room with a lot of padding on the walls.

However, I do admit, this little episode was a rude little reminder. Of how physically fragile my mother really is. But even with the dementia ruling her brain waves, her spirit is still strong. And I will continue to take my lead from hers, and keep my spirits strong as well.

Firefly Magic

We had a couple of strong thunderstorms blow through our part of the world last week. Which is not that unusual for this time of the year, when the heat and humidity builds throughout the day, causing storms to crop up whenever their mood strikes.

One night after dinner, as my husband was enjoying his playtime with our two puppies, I stepped outside for a bit of quiet time at the end of a long and hectic day. I sat down on the steps leading down to our backyard and looked towards the horizon. It was that time of the evening when the sunset was nothing more than a hint of a reflection on the remaining clouds hovering over the ridgeline. The storm had passed a good hour before and darkness was rapidly invading the tree grove surrounding the pond at the edge of our property.

Then suddenly, as if switch had been turned on, the tree grove erupted with flashes of soft white lights. Small and twinkling, like starlight coming down from the sky to play with the cool breeze whispering through the trees.

Fireflies. Hundreds and hundreds of fireflies.

At first I simply smiled at their show. But the longer I watched, the more fascinated I became with the rhythm of their dance. It was hypnotic. And all the challenges and annoyances of the day vanished from my mind.

I am not quite sure how long I sat there. It could have been a few minutes. It could have been a few hours. Finally, I broke the trance and went back into the house. And I told my husband he should take in the show, which he did. When he came back inside, he had the same look of wonderment on his face that I knew I had on mine.

I decided the experience was a keeper. But rather than take a photograph, I decided to treasure it as a memory. In my mind, I wrapped it up in a pretty box with pretty bow and stored it in my memory banks in my pretty memory category, so I could bring it out whenever I needed a boost of wonderment.

A few days later, I had a routine visit with my elderly mother. And like the many people who are caring for a loved one who is suffering from dementia, I know I must always be prepared for any scenario. As it turned out, the visit held nothing out of the ordinary. But then, my benchmarks for what is ordinary and what is extraordinary seem to change on a daily basis. At least when it comes to my mother.

My biggest challenge lately has been dealing with my emotional responses to the deterioration I see, not only in her physical condition, but her mental condition. Each time I visit her, it gets harder and harder to keep the mask of normalcy on my face. And not replace it with a mask of debilitating sadness.

And until recently, the methodology I had developed was working just fine. But for some reason, a chink in my armor has appeared in these past few months. Perhaps I am simply on an emotional overload. My limit has been reached. It is as if I have developed an allergic reaction to watching this once lively and independent and intelligent woman who is my mother simply fade away before my eyes. What once I could handle, now seems unbearable.

Good news is I know I am not alone. I have my support system with friends who have been there and done that. And most importantly, a husband who is always at my side no matter the situation. WIth their help, and a personal treasure hunt to find that well of fortitude buried deep inside me, I know as long as I keep putting one foot in front of the other, I will be just fine.

And when the going seems as if it is getting too tough, I know I have my pretty box dressed with a pretty bow stored in the pretty memory category of my mind. And it is filled with the wonderment of an evening dancing with the fireflies after the chaos of a summer thunderstorm. It reminds me there is joy to be found, if you simply take the time to look and effort to see.