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Posts Tagged ‘dementia’

Last night we watched Nomadland. Though beautifully acted and directed, let me just say this is not a movie choice you want to make if you are having a particularly bad day. Steeping you quickly into the darker side of the human reality, Frances McDormand takes the viewer on a realistic and poignant journey of loss, homelessness, and isolation. Got to give it to her. She put forth her most unadorned self freely, with no apology, which for me, who has difficulty going to the grocery store without make up and hair in place, was so refreshing.

I understand full well the feeling of not having a roof overhead. Back in the early 1990’s I spent two weeks with no residence to call my own, no money in my pocket to rectify the situation, and only a case of Vienna sausage, two large bottles of water, and a bottle of Chardonnay with which to sustain myself. In my case, I knew there was light at the end of the tunnel, but still was it was a life lesson I shall never forget. The experience allowed me to appreciate even the smallest of creature comforts such as flushing a toilet, or slipping into a warm, comfortable bed each night.

I believe our time here on earth to be a series of connected lessons. Perhaps this is not true for others, but my life certainly has been. Often, when I did not take heed of the message the universe was trying to convey to me, the same lesson repeated itself until I fully understood the point of the information being transmitted. Sort of like Bill Murray in Groundhog Day. Hopefully, I have waded knee deep through most of the karma I created in my younger years at this point, and shed the bulk of it in the process. I try to be the best version of myself possible each and every day. This does not mean I always attain that goal, but that is my intention when waking up in the morning.

Many of the earliest lessons I learned from my grandmother and my mother. My grandmother, gone for many years now, left many life lessons behind for me to lean on. She was a steady, consistent force of nature and she taught me much in the nine years I lived under her roof. My mother, before the dementia claimed much of her memory, showed me both what to do with my life, as well as at times, what not to. Both paths helped me to find my way. Mother is getting along in years, there’s no denying. Sometimes, I don’t want to look at this, because when I do, I have to imagine my world without her in it. As she loves to say she is my biggest fan. No matter how badly I screwed up, my mom still insisted on digging around in the detritus, until she found the good in me. Together, we’ve shed tears, laughed until we cried, shared grief, helped raised my children, been a part of raising theirs, and never allowed miles, however many spread out between us, to break our bond. Always, I knew my mother to be a safe port in the storm. When lost, unhappy, sad or just in need of a hug, her door would be the one I would knock on, her number the one I called. In her eyes I was infinitely special. Though I have often viewed myself as a highly flawed being, somehow to her, I was perfect. No one, I am sure, will ever love me again quite the way she does. When I think of saying goodbye after traveling these many years together, I recognize the pain will be great. Along with the sadness, there will be such gratefulness for having been allowed to spend this time with her.

Certainly, it would be a fairy tale to say our relationship existed without bumps. My mother was a helicopter parent before the term was ever coined. I was her “only chick” and if I didn’t give her something to worry about, which I often did, she’d look around until she found something she could land on, and worried about that. Mothers and daughters, the eternal struggle. I know I feel this at times with my sweet daughter. I wonder on occasion if I should simply initiate our conversations with “I’m sorry for everything I’m going to say or do wrong before we hang up”, just to cover myself prior to opening my mouth. I hear this from many of my female friends with adult daughters. Perhaps it is that we still perceive these wonderful strong women as our little girls. I really don’t have the answers, but I do know it’s not without peril this mother and daughter dynamic from time to time.

So, this Mother’s Day means a lot to me. Sunday we are coming together as a family to honor our oldest member. Thankfully, the pandemic has begun to release it’s tight hold on us. With everyone freshly vaccinated, there will be opportunities for hugs and I’m sure a special time spent together. Life seems lately to move forward at a record breaking clip, with adjectives such as fast and furious setting the tone for how we barrel through our days. There is little time for quiet reflection, or being in the moment. Sometimes we forget to stop and actually see the people populating our world, to hear them, or touch them. The virus offered up a gift with all the pain, surprisingly, allowing a spotlight to shine on this missing connection, the forced isolation highlighting how very important those we love are to our well being and peace of mind.

Today I agreed to allow hospice to begin to share in the care of my dear mother. As the doctor explained, this is not a death sentence, simply an additional layer of personal attention to promote her well being. Uh-huh. I can feel her hand slipping out of mine. People will say about older people, “they lived a long life”, or “they had a good run”. No matter how many birthdays they’ve celebrated, I’m not sure if it ever feels like it’s time for us to them to go. I can see she’s beginning to get tired, so I will allow the universe to unfold the story in whatever way it must and simply be content to be a player on the stage.

If you have your mother still with you, give her a hug and remind her how much she means to you. If you do not, then lift a glass to her, I’m sure she’ll get your message. Have a good one. Happy Mother’s Day, Mama.

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Here we are four days after Christmas and my holiday decorations are still happily twinkling away. So not like me this behavior. The tree goes up the day after Thanksgiving, and comes down the day after Christmas. My best friend asked me why I feel the need to this. Why? There has to be a why? If I were to hazard a guess it’s because I’m a bit of an order hound at times. Order and having things where they are supposed to be is important to me. I’m not sure why actually. I don’t perform at my optimum when chaos abounds. My children remember me doing this when they were young so this has been my mantra for as long as they can remember. So firmly is this ingrained in me, I’ve thought of having a tee shirt made to wear for the occasions. But for this tradition, as with for so many other “normals” in 2020, it seems I have thrown the playbook out the door. The tree has brought me great joy over this unusual holiday season, and I intend to hold on to that happy feet feeling at least until the new year is rung in.

There’s always a little depression that settles over me once all the decorations are tucked away in their boxes for another year. The hustle and bustle of the holidays, with all the memories (good and bad) behind me, and a fresh new year unfolding with all it’s expectations and disappointments waiting to be revealed. I missed Rick especially this year, not that I don’t always feel his absence. I can’t imagine what he would have thought of all that is going on, but I certainly wouldn’t have wanted him to go through a cancer battle with all this other stuff floating around in the air.

I got to thinking this morning. I know! Sunday is my thinking day. I try not to immerse myself in too much heavy thinking the rest of the week. However, I have to devote at least one day a week to actual deep thinking in order not to fall off the edge of reason completely. It seems to me we have a harder time fighting or believing in the dangers of Covid mainly because it cannot be seen. In this case we have to have “faith” in our scientists and medical personnel to guide us in the right direction. Webster defines faith as “a firm belief in something for which there is no proof“. In the case of the virus, we do have proof. Our scientists and medical professionals are detailing the facts of the seriousness of this pandemic for us on one channel or another all day long. Hospital wards are overflowing and our loved ones are getting sick, or worse case scenario, dying. More proof. Still, the “enemy”, if you will, remains invisible. An opponent so small as to not be perceived by the naked eye, yet capable of pervading every part of our world with the sole intent of infecting human bodies and disabling it’s hosts. Not a good actor, not a good actor at all.

It seems hard to remember a time we weren’t either talking about the virus or hearing about it in the media. I feel like a sailor lost at sea for months and yearning to see dry land on the horizon. I am looking forward to sticking my arm out for my vaccination (hopefully with minimal side effects) and getting on with it.

It will be interesting to see how the transition from one president to another transforms. I surely wouldn’t want the job, and admire anyone with the willingness to serve signs up.

On the home front, admittedly my home front, I am dealing with several after Christmas dilemmas. First, my mother is in a bed and board twenty-five minutes from the house. I visit her once or twice a week. When I do, I have to follow strict Covid rules including maintaining a safe distance from her and having both a face mask and shield in place. Though the dementia keeps the threat of the virus quite far removed from her on an emotional level, it still manages to create some ripples in the water on a physical level. Because they have to follow state guidelines in these facilities to the letter, the residents, or inmates as I prefer to call them, are unable to eat together in this facility as they don’t have a large enough space to accommodate them if seated the required six feet apart. This lack of socialization is exacting a toll on them in the same way children are experiencing isolation symptoms by being virtually schooled without benefit of classmates. Also a difficult wrinkle, I cannot hug her. This is something we were used to doing, and used to doing often. To add another nail to the board (sorry, the word coffin gives me goosies) she can’t go out with me for our weekly lunch and hairdresser appointments thus shrinking her world to an even tighter fit. Truly she amazes me. She breezed through Covid with the other residents, with only one of them, the only male, showing any significant symptoms. Even he, has returned from the hospital and is on the mend. Wow.

Dementia patients display all manner of symptoms as their confusion deepens. In Mother’s case, she has developed a fascination for Kleenex. Her enjoyment of the product is to such an extent, the manufacturer sent us a holiday card saying, “Thank you for your patronage. Your family’s support has managed to allow our company to remain afloat during these trying times.” You’re welcome. How one small woman can manage the tissue consumption she does, almost defies comprehension. If I didn’t know it not to be true, I would believe she is either consuming the sheets or running a black market Internet tissue site on the side. Not only does she put the tissues to the obvious use, but she also stores them in drawers, crevices and pockets, folds them, and generally just loves the stuff. Puzzled about such strange behavior, I looked this up and was surprised to find it not unusual for someone with dementia to have tissue issues (if you will). Some sufferers prefer paper towels, and many like to fold and refold dish towels or simply enjoy manipulating pieces of paper. According to my reading, some of this bizarre repetitive behavior may be attributed to boredom. Makes perfect sense to me. Mother has always been a very active person. A “doer” one might say of her. For her it must be absolute torture to be trapped in a wheel chair as well as being limited to the walls of the house she lives in. Her thinking may be a little askew these days, but I’m sure she still has well defined feelings going on inside. Poor Mama. It is terribly difficult to watch your parents lose their independence. While visiting I discussed my concerns about the boredom with her caregiver. Surely, there has to be a way to stimulate these shut ins? From what I looked up, games, music, reading to them, anything is better than sitting in a chair waiting for the grass to grow. Soooooo, we’re going to embark on some new ideas, imbue a little fresh blood such as I suggested in the paragraph above about Washington D.C. Sometimes when you have cooked the same recipe over and over it helps to have a new chef taste it add a new spice or two to liven things up. I even suggested music or dancing. This suggestion immediately got a negative response. “Why not”, I asked? They may have a few wires crossed but are not incapable of understanding simple concepts. Dancing, or so I’ve read, and music, are good for the mind and soul. I looked at my mother and raised my arms over my head. She watched me curiously for a moment, then put her arms up over her head. “That’s the spirit, Mama”, I thought! I moved my arms from side to side, then wiggled my fingers back and forth next adding a little foot tapping for emphasis. Quickly she got the idea and before long we were dancing. Perhaps Fred and Ginger weren’t turning over in their graves, but at least we were bustin’ a few moves as my grandson might say. Hah. So, keeping her interested and engaged is high on my to-do list for 2021.

The second dilemma concerns returning gifts to the stores. I’m feeling blessed this year my friends and loved ones gave me some lovely gifts, but a few have to be returned due to size issues. According to gift receipts included, these exchanges must be done in-store. In a normal year I’d just go to the store, get in line, and return them. This year I’m not sure that’s the plan I want to follow. Even though I’ve already had the virus, they really don’t know if that insures you can’t be reinfected. With the vaccine out there tantalizingly near I don’t want to take the chance of getting sick again before I have access to it. Not exactly a weighty problem, however, one I’m mulling over in my head this morning.

As we step hesitantly into this upcoming year I carry in my backpack a bag of hope. Hope for a rainy season to soak the ground and keep the fires at bay. Hope the vaccination is received by enough citizens to establish herd immunity and keep this damnable virus as bay allowing us to get back to a semblance of normal. Hope that this new administration helps to heal the wounds this country has sustained, and hope that people will come together once again in spite of their differences and work for the good of the whole.

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Well, another Halloween, and for me another birthday, have been put to bed. Now the big boys of the holiday clan lie ahead, Thanksgiving and Christmas. Trying to get into my grateful mode, which involves being thankful for what I have, not what I am lacking, I am trying to resist sticking out my boo-boo lip at not spending these beloved holidays with my family. Covid has certainly changed the landscape of our world since it’s arrival on the scene, but in the old “if life gives you lemons, make lemonade” line of thinking, if it is just myself, a dear friend, and Miss Boo, the Queen of Cats, seated at the table we will proceed in a festive mood.

Watching the trick or treaters come up to the porch Halloween night to grab some candy out of the bowl I left for them on the chair, really served to accent how much has changed this year. To be honest, I was surprised to see any children at all. It felt a bit lonely peeking out at them through my curtain, but it made me happy to hear them giggle as they grabbed their treats and went on down the road to the next house with a welcoming light on.

November 1st was my birthday. Yup, I have gone and added yet another ring around my trunk. I know I’m beginning to be long in the tooth, but truth is, I still feel, and often act, like a kid. I intend to keep that inner child alive and active until I’ve made it to the end of my last mile here. Aging is one thing, but getting old, well, it’s simply not my style. My grandmother told me once when she was in her ninety-second year, “I am a eighteen year old girl, trapped in a ninety-year old body”. For some reason that always stayed with me. She was to remain with us until she was ninety-six. Her vision, hearing and sense of taste and smell were gone at that point and I believe she’d grown tired of her ever diminishing world and was ready to fall in step with my grandfather who’d left us some thirty years before. Sometimes I look at my mother and wonder how she feels about the whole program. Because she’s lost the ability to communicate her feelings succinctly due to the dementia, I suppose I will be left to wonder. I do my best to keep her safe and happy. Modern medicine has extended our time on earth, but not necessarily increased the quality of the extra time we have here.

I had the most unsettling dream several nights ago. In my dream, company was coming for Christmas. My living room was a sea of half opened boxes with ornaments, wreaths, and all manner of holiday decorations scattered around me on the carpet. There were other people in the room and the plan, as I understood it in my dream, was we were going to put up the tree and decorate the house. As I began to unpack the box next to me containing the tree segments, I realized I could not remember how they went together. As the dream continued, I became more and more confused and unable to comprehend how to do even the simplest of tasks such as using a tape dispenser. Though I’m not an expert on interpreting dreams, my best guess here would be this dream allowed me a window through with which to view my mother’s world since dementia took the wheel. Having a loved one with dementia or Alzheimer’s is like losing them one small piece at a time. Gradually, the person you once knew fades into the background. In my case, my mother is happy and content and can still engage with me in conversation (not how to split the atom, but simple conversation) and knows who I am and recognizes my children every time I visit. For this I am most blessed.

Sometimes I think this generation doesn’t understand the value of the older members of our population. Having lived for a long time, they generally have so much to share about what they have seen and much to contribute by way of wisdom as to what is going on in our world today. They are like old oak trees. When they are sprouts, trees have spindly, unsteady limbs and sparse foliage. As they grow and flourish, they fill out, providing lush shade for those beneath them and shelter for the birds and animals making their homes there.

My grandmother taught me much about the world. I like to think perhaps my grandchildren have learned a little something from me. As our grandchildren get older and become more independent they seem to need us less, but I don’t believe that to be true. What is true, is that when they are young we are super stars in their life but when they reach young adults we are replaced with devices and peers. That is the natural way of things. However, the bond we develop with them when they are youngsters should endure as they mature and grow into adulthood. I know I was still my Gammy’s “dear Little Susan” until the day she passed away.

I think of family a lot lately. It’s like when you’re on a diet and all you can imagine having is a greasy cheeseburger and a big stack of onion rings. Being without them is a life lesson. When having them back within hugging distance, I have promised myself never to take that privilege for granted again.

Another election is also complete, or at least the votes have been counted and a winner declared. Having so many voters show up to the polls with Covid on the move to cast their ballots, is a indication of how strongly citizens of the United States felt about the outcome of this race. Whichever side your allegiances fell, and whether you are pleased or disappointed with the winning ticket, at least it is over and perhaps we can all find some middle ground with which to begin a civil conversation again. I, for one, would like to see us all begin to work for common goals so we can get out of the current pot of stew we are in. Perhaps that is simply too idealistic of a goal, but at least to be able to open our minds to thinking other than our own might be a step in the right direction?

I had the overwhelming urge today to take my shoes off and run across the grass in my bare feet, so I did. Last night I danced with the cat. One must find their joy where they can.

Thanksgiving will not be traditional this year. Rather than whine about it, I will get a turkey and create all the side dishes. A friend of mine will come and we will have a socially distanced dinner with all the trimmings with a dish on the floor for Miss Boo and Maya, my friend’s dog. I will Zoom with my kids and he will with his. Hopefully, we can catch a game or two but there will be no Macy’s Thanksgiving Parade this year to enjoy over coffee. That being said, I’m going to find the original Miracle on 34th Street and get my fix of parade footage there.

So, change is in the air. Someone told me the other day that they found change very disconcerting. For me, change is simply the natural flow of life. Nothing, and I repeat, nothing, remains the same forever. With each wave that rolls into shore, thousands of bits of shells are rearranged into an entirely different pattern. Leaves fall, people move, children are born, and people die. Each day is a state of flux and we are left to drift along in the current and take each turn in the bend as it presents itself to us.

I leave you with my introspective musings and promise to come back with a lighter story on my next writing. Stay safe. Let’s clear the slate and write something new and upbeat on it to carry us forth.

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