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.

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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.

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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.

Staying The Course

I have taken my fair share of hits during my stint as my elderly mother’s caregiver, as have all of us who are cast in this role. I’ve ridden the emotional roller coasters, played enough “Woe is Me” games in the mirror to last a lifetime, and on more than one occasion have felt as if I was a character in a Twilight Zone episode. Or a Hitchcock movie.

It has not been easy to watch my mother physically and mentally deteriorate. And it’s not easy to wrap my head and heart around the sadness which accompanies this process. Nor has it been easy to juggle the logistics of my immediate family’s needs, and a full time profession, while managing my mother’s care.

But lately my mind has been wandering to another hit I have taken during this seemingly never-ending journey. And that is the loss of the relationship with my older, and only, sibling. The brother who bailed on my mother and me. My ostrich. Who stuck his head in the sand because what he cannot hear or see does not exist.

And I am not the only person who has had this experience with their family members. Unfortunately, it is all too common for one person to rise to the role of caregiver, while the rest of the family goes about their lives in self-imposed oblivion.

My emotional divorce from my brother has been like a death in the family. The eight year old boy who carried around a five pound bag of sugar wrapped in a kitchen towel for a week after I was born, simply to see what it would be like to hold me when I came home from the hospital…he is long gone. The tween who used to write up homework assignments for me before I was old enough to have my own, simply because I wanted to do what he did every day after school…he has long since disappeared. The man who became one of my best friends as I grew into adulthood and who I believed would always have my back…he no longer exists.

And that saddens me. As so much of this process of being my mother’s caregiver does. Yes, there is comfort in knowing other folks share the same experiences. It is good to know we are not alone. And it does ease some of the heaviness in our hearts.

But if I could invent a time machine and turn the dial to whatever time zone suited my fancy, I would revisit the days when my brother and I were pals. When we would send each other obnoxious telegrams on our birthdays, before email and text messaging were the kings of communication. When we would talk on the phone for hours, each seeking the other’s advice on a career decision. When we would get together for holidays or for an impromptu dinner when one of us was traveling for business to the other’s part of the world.

But I can’t turn back the clock. And I can’t repair the damage that has been done to our relationship by my brother, the self-imposed ostrich. And I can’t wish away the sadness, for that would make me an ostrich too.

I can forgive him, which I have done. I can hope that one day we will be able to reconnect, which I do. I can wish that he will not regret his decision to be an ostrich, which I fear will not be such an easy task for him to do.

All I can do is stay my course. Do what needs to be done for my mother and let my brother’s dust settle where it falls. And be there with a stiff broom when he is ready to lift his head back outta the sand.

Playing The Blame Game

When I started my journey as caregiver to my elderly mother, I knew I had a long road ahead of me. First I had to wrap my head around what was happening to her so I could help her. Then I had to find a solution for each situation as it evolved. And I had to process my emotional responses and learn to cope.

Anger. Frustration. Confusion. These were my three primary emotional responses and still are to this day. Yet the toughest challenge I had to overcome was to learn how to properly play The Blame Game.

I could easily blame my mother. Or my only brother for bailing on us and dumping all the responsibility for my mother’s care into my lap. Or modern medicine and its professionals for not finding a cure for every condition that afflicts my mother.

But somewhere early on in my journey, some magical switch went off in my head. I knew in my heart that I could not blame my mother. It’s not as if she wakes up every morning thinking of new and devious ways to twist the knickers of her daughter. She didn’t ask for the dementia. She doesn’t want to be limited in her mobility because of the arthritis. She is angry and frustrated and confused too.

The difference is that she is the one living with dementia on a daily basis. I am just a participating, albeit concerned, bystander trying to help her. It’s not her fault. And if I want to get angry, I should target the disease. Not her.

And maybe my brother for being a jerk. However, I do admit that I have long since forgiven him. And not for his sake, but for mine. Well…I have almost forgiven him. Because I have embraced the right to keep a little bit of anger tucked away in a corner of my heart. For those tough days when I need it as fuel to power through a difficult situation with my mother. And so I don’t direct all that negative energy at the wrong source.

Maybe that is why I invented my mother’s invisible playmate, the illusive Missy Dementia. It gives me the luxury of venting to the disease and not the person afflicted with it. Because I know that I need to take care of my mental and physical health as well as my mother’s. Because I know at the end of the game, I will be the one left standing.

Rockin’ The Roller Coasters

I rarely wake up in the morning dreading the day, but two days ago I did. Because my mother had her quarterly doctor appointment that afternoon. And it was not just a matter of the logistics of carving out a huge timeslot from my busy work day. It was also a matter of the emotional and mental fortitude I would need in order to survive the excursion.

When dealing with a mother suffering from dementia, I never know what I will be encountering. A happy gal ready for an outing? Or an angst-filled woman repeatedly obsessing over the small details? Or a bit of both?

Which emotional roller coaster will I be riding today? The kiddie coaster with the brightly colored balloons painted on the side of the cars? Or the Thunderbolt coaster with the terrifying twists and turns threatening to launch me from my seat?

As it turns out, I was gifted a ticket for a “two-fer”, and took a ride on both coasters. My mother was in good spirits. But she excelled in the repetitive obsession portion of the day. Her visit with the doctor was pleasant and the medical report was positive. But the trip required a Herculean effort to manage her transport.

I was able to meet with Head Nurse “Kay” at my mother’s assisted living facility before I went to my mother’s room to pick her up. I like to do that on a regular basis so we can compare notes. Plus it is handy information to share with the doctor. While my mother is doing well with her daily routine…going to the dining room for her three squares a day, participating in the weekly exercise class and going to play bingo a few times a week…Kay’s report was not good regarding my mother’s ability to retain information short-term.

Both Kay and I have noticed a rapid decline in the past few months in my mother’s short-term memory. Kay cited examples in regards to my mother receiving her medications. A nurse will give my mother her meds, then before the nurse is even out of my mother’s room, my mother will say, “But you didn’t give me my medicines.” Or, the nurse will administer the meds, walk out the door, then my mother calls up to the nurses station saying she had not gotten her medicines yet. It seems my mother’s retention has now been reduced to nano-seconds.

At the end of our meeting, Kay’s parting comments tugged at my heart. She said, “When we tell your mother that we just gave her the medications, she always apologizes. She says how kind everyone is to her and how sorry she is to be such a bother because she does not remember. It is so sad to see the frustration in her eyes. That’s what hurts the most.”

Kay is so right in her assessment. And this is from a gal who has chosen a profession which deals with these issues on a daily basis. Not long ago Kay told me that she gains a great amount of satisfaction from her work because she knows she is helping people. She believes showing respect and kindness to those who need her assistance is one of the requirements of her job. Kay is a rare breed and one I am so very fortunate to know.

Kay did reassure me that as my mother continues her mental decline, she will be well taken care of at her facility. Kay said my mother is a sweetheart who brings a bit of sunshine into the lives of the staff and other residents, with her bright smile and warm greetings. And any failings she has with her mental abilities will not be an issue going forward. I can’t tell you how relieved I was to hear this news.

And even though I woke up that morning dreading the day, I survived and was reassured that my mother was doing as well as could be expected and most importantly, she would continue to be taken care of.

And at the end of the day, I received fantastic news on both a personal and professional level. So, I was able to lay my head on my pillow that night with a lighter heart. I knew no matter what the future holds for both my mother and I, we were going to be just fine.

And if it means I have to take a ride on an emotional roller coaster or two now and again…no worries. I will just hang on tight and rock on.