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.

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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.

Hitting The Wall

Yes, it has been almost two months since I have posted in this journal. And many thanks to the folks who have pinged me to see if all is well in my world. It is.

My self-imposed sabbatical has not been the result of a single catastrophic event. But rather the accumulation of a series of small events. Each unto themselves would be easy to digest. But when served in mass, they morphed into a beast of their own, reminiscent of a family dining table groaning with all the trappings of a Thanksgiving feast. Quite honestly, I would have preferred a light summertime repast of a fresh green salad and salmon cooked to perfection on the grill.

Since we last chatted, Mother’s Day has come and gone. And my mother’s 94th birthday. And Memorial Day. And I celebrated these holidays amidst the chaos of the past few months. I have come out the other side with a greater appreciation of life’s simple pleasures which can be discovered, but only if we choose to look for them.

My biggest challenge has been finding, not the time, but the desire to write about my experiences in dealing with my mother’s physical and mental limitations. I seem to have hit that wall that so many of us caregivers do…we who are dealing with an aging loved one suffering from dementia.

I came to this stunning realization just last week, when I took my mother for her quarterly checkup with her family physician. A visit with our good friend, the “Doc”, whose support and encouragement have been invaluable to me. It has become painfully obvious that my mother is deteriorating at a much higher rate than ever before. And while this is to be expected at her advanced age, I suddenly realized that I am not as emotionally prepared as I thought I would be.

SPLAT. Yepper…that is the sound of me hitting that wall.

My mother’s physical abilities are continuing to decline. While she is in no more discomfort from the arthritis than she has been in the past, her mobility is becoming increasingly limited, which is affecting her daily activity. Yet it is the deterioration of her mental abilities that is the most heart-wrenching. Because recently, I have noticed we are moving from her short-term memory getting worse with each passing moment, to a marked confusion associated with her long-term memory.

At first I thought it was a slip of her tongue…a reference to a 60-year-old event in which some of the details got skewed as she shared her memory of the experience. But she is starting to repeat the same slips as she recounts the same story over and over again. Perhaps I should be thankful for her consistency.

I am finding myself in new territory. Unchartered waters, so to speak. Because over these past few years, I have developed the methodology to deal with her short-term memory loss. And now I must develop a methodology to deal with her long-term memory loss.

Do I correct her when she makes those slips of the tongue? Or simply smile and bob my head and let it ride? Does it really matter if she incorrectly states where she lived at the time, or when and where she worked at the time? Who is it really hurting if she can no longer correctly recall those details that, until just a few short months ago, where ingrained into her conscious thought?

And adding icing to our proverbial cake, my mother initiated a new pattern of behavior during our visit with Doc last week. Typically, the three of us sit and chat during the exam, and Doc will ask my mother how she is doing, including gently questioning her on how well she is remembering things. For the past few years, my mother has acknowledged that she cannot remember as well as she could before. But has always added that it “only just started a few weeks ago”.

This time when Doc asked her about her ability to remember, she again acknowledged that she does forget a lot now and said that if you tell her something, she will most likely forget the information until a much later time. If she remembers it at all. And for the first time ever…in all these years I have been taking her for her quarterly doctor visits…she looked me in the eyes and told Doc that I would be the better person to answer that question on her behalf.

DOUBLE-SPLAT. Yepper…that is the sound of me hitting that wall again.

As I met my mother’s gaze, I mentally took a deep sigh, then told it like it was…with as much diplomacy for her benefit as I could muster, while still maintaining the truth of it all for Doc’s benefit. And the relief I saw in my mother’s eyes was poignant. She wasn’t imagining her memory loss. Nor was she denying it. The simple act of hearing me describe it to Doc had made it a stark reality for her.

TRIPLE-SPLAT. Ouch…that one hurt.

Sometimes we are elected to a role which we have no desire to pursue. We wonder how the heck we even got elected in the first place. Other times we will embrace a new role and take ownership of it and run with it to the final conclusion.

My role as my mother’s caregiver is ever evolving. My duties vary as her needs change. My responsibilities increase with each day that passes.

Yet I cannot help wonder what the end of this journey will bring. Not literally…as I know what the final outcome will be. Duh-yup. But what new experiences will I have encountered? What new insights will I have learned? And I have to wonder, just how many more walls I will have to hit?

Holiday Heebie-Jeebies

Last year was my elderly mother’s first Easter in her new digs at the assisted living facility. She and I attended services in the chapel and I joined her for lunch in the dining room. While it was different from the previous year when she was still living independently and came to my house for the holiday, we had a nice time. And it worked.

However, this year I knew I would have to change it up a bit. Because for a person suffering from dementia as my mother does, a lot can change in a year. A lot can change in a few months. Oh, who am I kidding? A lot can change in the course of a few short weeks.

As this Easter Sunday approached, I realized I was not looking forward to this holiday.  I recognized the familiar sense of dread I have been feeling at the approach of every holiday for quite a while now. I become afflicted with a nasty case of the Holiday Heebie-Jeebies. Because I never know which “Mom” will be “in the house” that day. Will it be the happy gal who chatters away repeating the same stories, but with whom you can still have a pleasant visit? Or will it be the nervous twittery gal who is anxious and confused due to a change in her daily routine, which makes for a very unpleasant visit?

After giving it some thought, I opted to visit her at the assisted living facility again this year, rather than inviting her to my house for Easter brunch. But we did not attend services in the chapel. We did not share a lunch in the dining room. We did not go to one of the lounges on her floor.

We stayed in her room. I brought her flowers, arranged them in a vase and placed them on the table by her window where she could see them. I put away the personal care items I had brought her, took stock of her current inventory and made a list of items she would need on my next visit. Outside of that bouquet of spring flowers, it turned out to be pretty much of a routine visit.

We did have a nice conversation, since I kept it to topics which I knew would be easy to chat about, as has been my habit lately. And we enjoyed a laugh or two. I did extend my visit longer than has been our routine. Which raised my mother’s anxiety level since lunch was being served earlier that day because of the holiday. And as our visit was coming to its close, she kept her eyes on the clock, announcing the time every two to three minutes.

Hey, I get it. I’m not a total idiot. I understand that being on time for meals and activities is important to her. Which is why I schedule my visits with her to coordinate with her daily timeline and not what is convenient or easier for me. And holidays are no different.

What has become different for me is that I have finally had my holiday epiphany. I have made the conscious decision that while I will ensure my mother will have a pleasant holiday experience, it is as important that I have the opportunity to do so as well. And my personal holiday celebration will not always be shared with my mother.

Sometimes my holiday celebration will be shared only with my husband and my puppies. An early morning walk in the park. An afternoon sitting together outside in our backyard, with my puppies napping in the sun, while I finish the book I have been reading and my husband snoops through our garden books for seasonal inspiration. Or perhaps an evening of watching old movies in the peace and quiet of our family room.

I can honestly say I now feel cured of those nasty Holiday Heebie-Jeebies. I have been self-vaccinated with the realization that my holiday experiences are just as important as my mother’s. And I am not being a selfish person. Or cruel one. But I am learning how to be a survivor.

The Drill Sergeant

My niece, who is my elderly mother’s youngest grandchild, pinged me yesterday. She wanted to let me know she would be traveling close to our area for a few days on a spur-of-the-moment trip. Since she lives over 1,000 miles away, her news was a welcome surprise. She was planning on extending her trip for an additional day, so she could take the seven-hour-plus round-trip drive to visit with her grandmother. And hopefully, my husband and myself.

My niece is a sweetheart of a gal in her late 20’s. And like her brother and sister, she adores her grandmother. And while we were all disappointed that my husband and I would not be able to clear our schedule on such short notice, she still wanted to visit with her grandmother.

It has been over a year-and-a-half since my niece has seen my mother. Their last visit was at my nephew’s wedding. And while I did not want to set off alarm bells in my niece’s mind, I felt the need to mentally and emotionally prepare her for what she would experience. A lot has changed in the past year-and-a-half for my mother, with her dementia kicking into high gear and the decrease in her physical abilities. I knew my niece would be better served to be in the know, rather than blind-sided.

As my niece and I continued our conversation, I began to feel like a drill sergeant as I shared all the “do’s” and “don’ts” for visiting my mother. A comprehensive list of requirements that I have long since accepted as the norm. But for someone who is unfamiliar with the eldercare gig, my instructions sounded more like the ramblings of a person suffering from an obsessive compulsive disorder.

_ _ _ _ _

Do call her at least two days before you plan to visit. Don’t leave a voice message if she does not answer the phone, but rather call back in a few minutes. Because she rarely notices the little blinking red light on her phone indicating there is a message waiting to be heard. And if she would notice it, she is no longer capable of retrieving the message, even though the simple instructions on how to do so are right by the phone.

Do be aware she is on a time schedule for her three meals a day. Don’t come during those times or in the evening. And don’t extend your visit so that you are there a half-hour before a meal time. She will be constantly watching the clock, anxious for you to leave, so she can get to the dining room on time. The best time to visit is mid-morning or mid-afternoon. Don’t visit in the evening, because she is not as mentally alert then.

Do call her again the day before you visit and once again when you are about an hour away from arriving at her facility. Don’t neglect to do this, because the chances are good she will not remember you are coming, no matter how many reminders she has scribbled on notepads scattered about her room. And if she does not retain the memory you are coming, she will be confused and disoriented, which means you will not have a very pleasant visit.

Do sign in with the receptionist when you arrive at the assisted living facility and ask to be shown the way to her room. And be sure to sign out when you leave. Don’t feel as if you need to stay in her room for your visit. There are two well-appointed lounges on her floor and you may be more comfortable visiting with her there. Don’t expect her to know where those lounges are, so be sure to ask the receptionist when you sign in.

Do expect to see a marked decrease in her mental ability and in her physical mobility since the last time you saw her. Don’t be surprised if she repeats herself or asks you the same questions over and over again. Don’t lose patience when she goes to the bathroom six times before you leave her room to go to the lounge.

Do keep your conversation simple when you share your news with her. Don’t fill your conversation with too much detail as she will not be able to process it. Don’t expect her to remember the names of your brother and sister and their children. Best to introduce them into your conversation by saying “my brother, Bob and his wife, Janice…”.

Do try to keep to topics about yourself and family, rather than about her. While she may not remember a lot of what you talk about after you leave, she will enjoy your stories at the moment you share them. Don’t ask her about bingo or her other activities unless she brings them into your conversation. Because she has been getting confused lately when people ask her these questions.

_ _ _ _ _

As I came to the end of my dissertation, I knew there were many more details I had left out. But I was hesitant to slam dunk my niece with too much more information than I already had. My niece was a real trooper though, and we joked about my role as her Drill Sergeant. But she understood and she thanked me. And said she felt at peace knowing I was taking care of her grandmother.

Nice gal, my niece.

Seasonal Change

Even though Spring has not quite yet sprung in my neck of the woods, there is a distinct scent of change in the air. The sun seems brighter and the sky is more often blue these days rather than gray. The afternoon breeze feels refreshing rather than bitter. And the thought of warmer days brings a sense of joyous anticipation after the harshness of this past winter.

I enjoy each of the four seasons in my part of the world. And just when I seem to lose my affection for one season, the next rises to its occasion. It is this cyclical change which keeps my boredom at bay, and allows me to appreciate each season for the gifts it brings.

And very much like nature’s seasonal evolution, my role as my elderly mother’s caregiver has also evolved. And just when I seem to be running out of the emotional fuel I need to keep putting one foot in front of the other, somehow I magically discover a hidden treasure of strength buried deep inside myself.

I have learned, and more often the hard way rather than the easy one, that taking each challenge as it comes is the only way for me to survive. While keeping an eye on the larger picture can be a good thing in order to be prepared, it is easy to lose sight of the smaller details of the present. And since I do not have a crystal ball to gaze into and see what the future may bring, living for each day is truly a gift unto itself.

Because I know my mother will never get better. Because like a thief, the dementia steals pieces from her each minute of each day. Because her arthritis will only get worse, reducing her mobility in increments to minuscule to measure on a daily basis. But her heart and her spirit are still strong. And no disease or ailment can take these from her.

So, I take my cues from my mother. I follow her lead on this arduous journey we share. She is running point, not me. And as my role continues to evolve, I have chosen to look forward to each cycle like the anticipated change of a season.

It Takes A Village

Extended families, single parenthood and the idea that a village plays an essential role in the raising of a child are considered by many folks to be a more contemporary style of parenting than the traditional values of my mother’s generation. Many people tend to define her generation’s family unit as having one father, one mother and a gaggle of children.

However, when my mother was growing up in the city in the 1920’s and 1930’s, she had a large extended family living under the same roof. Her father had died before she was born and her mother remarried. My mother had her adoptive-father, a half-sister, a half-brother, and an uncle all sharing a household. Aunts and uncles and cousins who lived far away would often visit for extended periods of time. It was a full house filled with the sound of loving, albeit boisterous, voices.

My mother’s neighborhood was a mix of cultures. English and French. Polish, German and Armenian. Everyone shared their heritage with open hearts, along with the pride and loyalty they felt for their new country. It was a 20th century village tucked into the pocket of a large American metropolis.

At this stage in her life, my mother’s “village” is much smaller now. And like the raising of a child, caring for a parent suffering with dementia most definitely requires the help of a village. “Residents” include myself and my husband. Our family doctor along with the head nurse and medical support staff at my mother’s assisted living facility. And let’s not forget the housekeeping, kitchen and administrative staff as well. Along with her dentist and her foot doctor. And the all important hair stylist.

As village residents, we each have our primary role. Our secondary role is to keep an eye out for any change in my mother’s mental and physical abilities. And most importantly, sharing our assessments.

Without the help of our village, my road would be a much harder one to travel. Because I cannot be with my mother 24/7. Nor am I a medical expert. And trust me…while I consider myself a decent chef, you never want me to cut your hair. So, I trust my village neighbors to keep me informed and to let me know how they believe my mother is doing. 

And along with the regular reports I receive, I have been gifted an additional treasure. And that is the knowledge that my mother still has a positive impact on everyone she comes in contact with. It doesn’t matter that her short-term memory is rapidly deteriorating. She still greets each person with a smile and a warm hello. People still walk away from an encounter with her feeling better about themselves. She still has the power to make someone’s day brighter by simply being around them.

And no matter that her mental and physical abilities are in decline. In our village, she is still our matriarch. She is the glue that binds us together. She is the bright spot in our day. And I cannot think of a more fitting tribute to the great lady my mother has always been.