I woke up this morning with a heavy heart. A friend passed away last night, ending a difficult battle with a horrible degenerative disease. Out of love and respect for her partner, whom I know reads my blogs, I will only publicly comment on how much I admired her love and her strength throughout this entire heartbreaking ordeal. It has been an example of unwavering love and devotion for her partner up until the very last day.

The journey for which we are all destined to travel is the road that brings us to the end of our life.  For some the journey will be much shorter than others. Only the Universe can know which road will be ours to take. It has weighed heavy on my mind of late, especially since I placed my mother into her memory care home.

In my work and now with my constant visits to my moms place, I every day see people in the end stages of Alzheimer’s. They are confined to beds and wheel chairs,  can’t communicate, feed themselves or follow conversation.  They are trapped in a body with no way out except for the sweet release of death.

It is an end of life experience that chills me to the bone with worry that this will one day be the fate of my mother. I never feel more helpless in my care planning for my mother than to know that I have no control over offering her choices in how she will die.  Her mind is now too far gone for consent, so legally we just have to wait and watch and witness her constant decline. It is such a cruel consequence to the disease.

One recent Sunday I picked my mom up to take her on an errand with me to a Board and Care home where I had placed a hospice patient.  I was alerted by the administrator of the home that my client was actively dying, so I wanted to take some pie and pastries for them to have on hand to offer visitors and family.

As we were driving Mom asked me repeatedly where we were going.  I would reply that we were going to quickly drop something off to a friend and left it at that. I was trying not to bring a negative aspect to our visit, so I left out the part that my friend was ill. As expected, Mom continued to ask the same question every few minutes, so in an effort to steer her in a different direction, I finally told her that my friend was dying. Mom turned to look at me and said “Oh I am so sorry, how sad.” I replied that yes it was sad but that this woman had lived a good long life.  Mom asked was she sick and how old was she and I told her, “Yes she is sick and she is eighty-five.” Mom said, “Oh well that is a good long life, but it is still sad”, and I readily agreed.

Then my Mother asked, “Why does that happen to people?” When I asked what she meant by that she said, “Why do people have to get sick, why can’t they just die?” I of course answered that sometimes they do, but typically she is correct, people usually get sick before they die.

My mother never ceases to amaze me at times like these, as I am bewildered that she can be so lost in her memory one minute, barely able to construct a sentence, and pop into having a proper and thoughtful conversation the next. When this presents itself I usually try to take advantage of having meaningful talks with mom.

So I continued in this vein and asked. “Mom do you ever think about dying?” She replied that she doesn’t now but she is sure she did once upon a time. I laughed and said,” Well I guess it is good you don’t think about it anymore.” Mom had a thoughtful expression on her face and said, “That’s right. There is nothing you can do about it. One day I will wake up and then I will be gone. That is just the way it is.” I could feel the tears starting to well in my eyes and I thought to myself, I hope it goes just that quickly mom, I really hope so.

 

A new realization in my journey with my mother and her constant, and much despised companion dementia, hit me with unusual vigor these last few weeks. It was the recognition of my inability to find emotional peace in my decision to place my mother into memory care. It is not a matter of second guessing or regret as both those states of mind assume a different choice was possible. We had none. Financially the only way to continue to afford my mothers constant need for care was a placement out of my home.

Cruel is not a strong enough word to cover all the bases of what a disease like Alzheimer’s does to a family. You make best decisions for your loved ones care only to be rewarded with emotional turmoil. The constant reviewing in your mind of how you got to that decision and finding yourself boxed in with the realization it was really the only one to make. But almost without exception it is a decision that takes a toll on the family.

In my case it was the heartbreak of handing my mother over to others to keep her safe when I wanted her at home with me.  I promised myself and my mother I would take care of her when she was too old to care for herself. I wanted to do that. But making the choice I did was the only way to truly be able to continue to do so.

I meet families every week in my work who struggle with the same agonizing decision of wanting a loved one at home but not being able to continue to mange the care physically, emotionally, but mostly financially. It is a disease that will change you and break you in every area where you thought you had life well planned and handled. It will take away your retirement dreams, your thoughts of how your family will age together, it will take every last dime you put aside for a comfortable life in old.  It is a disease that will change the course of everything it touches. You come to a place in dealing with Alzheimer’s  where you find there are no good choices, just better ones.

So finding peace while dealing with a disease that by its progression does nothing but create chaos is my newest challenge. For me it is coming to terms with the commitments I made when I was young being reshaped without my permission or my control. I cannot choose what caring for my mother looks like in her old age.  I can only view the landscape and choose a path I think will be the smoothest for her.  But without exception, each step in this journey takes her farther from me, both in her mind and now physically from my presence.

You are supposed to find solace in doing the right thing for those you love. It sounds good but in the reality of dementia solace is nowhere to be found when you do the right thing. In its place stands determination and persistence. They don’t bring the warmth of solace or the feeling of peace, just piece of mind.

To find my solace, like most times in my life, I will look to my mother. Just like when I was a little girl I will hold her hand, look into her smiling eyes and try to make her laugh.  I am grateful to still have her presence, her sense of humor and her love. Even though on her best days she doesn’t know my name, a Mothers touch can still work miracles, even in the face of chaos.

 

One of the most difficult things about getting older for me is dealing with losing family members that were such central characters in our dynamics. It goes without saying the biggest loss has been my Father. Don’t get me wrong, Pat Flynn was not without baggage that made life with him more than an occasional challenge. But he was also one of the the most sensitive, kind and courageous people I have ever known. I remember his strengths much more in his absence and that is reinforced each day by my mother.

Like all marriages my parents had more than a few up and downs.  Many a time the jury was out on why my mom stuck it out with my Dad right up until the end. But devoted to my Dad since high school she remained. The refreshing part of that commitment is the memories she has retained surrounding my father. Everyday she mentions him and each time it is with fondness and longing.  She never says or remembers a negative thing about my dad. Mom is always asking about him, looking for him and waiting for Dad to come home.

My Father is mentioned so constantly in my life that it is almost as if he is still alive and well, but just off on another Mexico trip with us awaiting his return! It feels that way so that is what I have settled mom into believing. In her dementia she gets very angry if you remind her dad has died as she will swear she just saw him…. and who I am to say she hasn’t. So being on a diving trip in Baja makes perfect sense and so that is the story that sticks and gives her the most comfort on why he is absent.

Some days it is difficult for me, as I wish we could share how hard it is to miss him and I want to reminisce, ask her about early details in their lives together and generally share memories. But his everyday presence is commanded to be as if he still lives and so I play along and speak of him in the present. Everyday my father is alive, traveling and loving his life vacationing in Baja.

In the end that is how my dad would have wanted to spend his afterlife, just as he spent his favorite past time when he was with us, spearfishing in the waters of his beloved Baja California Mexico. It makes my mother happy to think about him there and I am sure every day it is exactly what my dad would have wanted for them both!

Moms new memory care home/living situation seems to have settled into a comfortable stride for both mother and me. Mom seems to not notice that that she is in a “facility” and I seem to be able to manage daily visiting without the guilt of leaving with the heavy heart I experienced with each exit in the early weeks.

I try to slip in to visit during the down time when she has no activities so I can share time with her alone in her room before events and meals. It works out very well as I walk her down to dinner or lunch in the dining room and it makes it easier to leave her to something to look forward to when I depart, as a distraction.

Today, as I walked mom from her room to the elevator, I explained that we were going down to dinner. As we stepped into the elevator Mom asked was I joining her for dinner. I told her that I had a previous commitment but that I would like for her join me at my home the following evening for dinner if she thought that would fit into her schedule. She was grateful for the invitation and then replied, “You know one of these times I would like to invite my husband to join us.” Keeping in mind my therapeutic lying I responded with, “That would be great!”

As we descended she looked at me and asked, “You don’t have a husband do you?” In my defense, and at the risk of objectifying all men who hold this honor in love and grace, I had to dumb this down to the fact that this is just a favorite topic of my mother’s. No offense is intended, she just loves the idea of women being married to a man. Knowing this is a favorite topic I fell into step with a response and answered, “No I don’t Mom, but I was thinking of getting one. What do you think?” Mom answered, ” I think that is a good idea. I think you would enjoy it.”

We quietly rode down to the next floor and just as the elevator door opened she looked over at me, and with a knowing smile and said, ” Or at least least you could just pretend.”

Since my father died in 2012 I have spent the past six years, with the help of my partner, brother and sister, managing my mothers care. First we remotely monitored her care as we all three lived in different cities than my mom. Then I moved up and lived with her for a period of eight months to try and determine the feasibility of keeping her at home but so far from our watchful eyes. Of course that presented the inevitable decision to have to move her down near me so I could better manage her care.

My original intention was to move my mom into an assisted living facility. So I contacted a national placement agency (which will go unnamed) and they did the most impersonal job of attempting to place my mother. They literally spent two hours on the phone with me doing a needs assessment, then sent me a list from the internet of 16 places to look at, half of whom did not specialize in dementia and the other half that did no accept her dog Timmy. It was such a stressful process, and one in which I could have used some serious hand holding. It was culminated by my making a choice, taking my mother in for an introduction and when she realized what was happening looked at me, started to cry and said I was giving her away. She said that she thought I had promised I would always take care of her.

I wrote a blog on that one because it literally was one of the worst days of my life. I never did move her into assisted living but promptly set her up in our tiny home and she lived with us there for two and one half years. In that time I changed jobs twice, mostly to try and find one that could accommodate my new living situation with caring for my mom and have some flexibility to work from home. Then the miracle of being asked to partner in a new business with an acquaintance of mine fell into my lap about a year ago. She asked would I like to start a placement agency with her to assist families in moving their loved ones into assisted living and board and care ohomes. Bingo! It was like the universe gave me the best gift I could have asked for, a perfect fit at something I knew very well.

So one year later I love my job as it has to be the most fulfilling thing I have ever had the pleasure of doing. To connect each day with those who are at a crossroads of which I am all too familiar, especially when it comes to the heartbreak of placing a loved one with dementia, has been the greatest honor of my life. It feels as if everything has led me to this time in my life. I am so grateful.

So it came as a bit of surprise, that after my mother’s last big fall and her five weeks in skilled nursing which precipitated a serious mental decline for her, that I agonized once again about placing her in a memory care facility instead bringing mom home. Just like those I help everyday I could hardly imagine letting her be under someone else’s watchful eye. But just as I counsel my families, I had admit to myself that it was time.

Two weeks today have passed since I placed my mother into memory care. Some families place and the are off to take the much needed respite that they are entitled too. I placed my Mom one half a mile from my office and two miles from my home so that I can see her at least once if not twice a day. I knew this next phase was going to be one that I was going to have a hard time handing over, so having seen how it worked with other helicopter daughters I wanted the flexibility to get to her quickly and often.

Since we have placed Mom people ask are you relieved and don’t you feel your stress level has gone down? To be honest, yes I am relieved she is safe and well cared for but no my stress is not totally gone. It is an adjustment to not have her here with us and that ads a new dimension of worry. I am not there to hold her hand in the middle of the night and calm her fears when she wakes up from a nightmare. I am not there to hug her when she cries and gets confused about where she is and asks why she doesn’t have any memory. I am not there to laugh with her and enjoy all her sarcastic comments and funny ways. I miss her even though she is close by.

But I am also not there to have to do the toileting, the bathing, the dressing, the medication management and the daily worry of being home all the time and having only a few four hour blocks of time each week to enjoy private time. For that I selfishly am grateful to hand that over to those who are their own angels for choosing that profession and giving me the gift of being just her daughter again.

Our next phase has come to pass and the adjustments for me are as difficult as those I witness in the families that I assist on this same journey. We walk hand in hand to try and make the best decisions, while also balancing the interest of our loved ones with those of our own lives. It truly is one of the few times you experience heartbreak and relief all in the same moment in time.

When my mother sees me walking up at her memory home, she typically reaches out to me and says “Thank God you are here! Have you come to take me home?” I lie and say of course I am and I see relief pass over her face. I hold her hand and we walk up to her room and sit together. I tell her about my day she pretends to understand what I am talking about, then when it is time to leave I tell her I will see her tomorrow. She surprisingly says ok and thanks me for coming, having long forgotten she is in a new home, and off I go without the dramatic separation I so feared she would experience when she sees me leave. It really is ok.

Some days have been easier than others. One day this week she had no idea who I was at all. I went back a second time just to see if it would be a better day and still she had no memory of me. It’s to be expected and yet it still hits me a bit in the heart on the days it happens. But in the end this next phase is taking the predicted path and it is one we just have to follow.

Some of the steps will be lighter than others but in the end we have no choice but to move forward. So much to be grateful for and if I can just keep that as my focus Mom and all of us who love her will be just fine. Another lesson to share with other families and another step in my own families journey with Alzheimer’s. I can look at it is a gift, to be able to empathize with others. But to be honest, this is one gift I can truly say I would give back to the universe in a hot minute. If only it would take it….

When I was in my early forties I had a period of about six months where I could not fall asleep because each night, as I lay there in bed, the dread of how devastated I would be if my mother died would sneak into my consciousness. I remembering it feeling so awful as I would perseverate on why this thought kept creeping into my mind and imagining it foretold an impending doom about to befall my poor mother.

My first clue that I was not experiencing a blooming talent of clairvoyance materialized when the following six months found me lying awake obsessing on how we could possibly be inhabiting the same space on this earth as did the dinosaurs. I could not stop thinking about how they lived for almost  200 million years and now there are none and humans weren’t even created/in existence for another 66 million years after the dinosaurs died out! Clearly the impact of this realization did not resonate with me at a more appropriate time, like in the fifth grade!  I was probably too busy passing notes to my friends under the desk.

It is funny to me now that I had that odd year of sleep deprivation over two of the most random topics. But I can still remember the dread of imagining hearing that my mother had died and how I would react and how devastated I would be! My how life gives you a chance to see things from a different perspective, if you just give it enough time. Who knew the thought of her dying would one day feel like her being released from a prison not of her making.

It would be prudent here to explain that the last thing I am implying is that I wish for my mothers passing anytime soon. In fact I saw her just this morning and her smile was so beautiful and her laughter so bright. I walked onto her floor at the Skilled Nursing facility and mom’s physical therapists were walking her down the hall to get her strength up. She was singing and smiling to everyone as they walked past. It really made me happy to see my sweet mother doing so well.

But I would also be less than genuine if I did not admit that a new fear has now crept into my consciousness. I have a new worry that keeps me awake at night, sometimes making sleep difficult and often bringing tears to my eyes.  It is the thought that my mothers healthy body will continue to outlive her mind, far after there is little left of it to enjoy.

Alzheimer’s is such a cruel disease. The brain can completely deteriorate into nothingness but leave behind a body that breaths and a heart that beats.  The limbs contract, the eyes may no longer see and the ears lose the ability to make sense of the noises. I see it every week in my work, my heart breaks for these people and it chills me to imagine this one day could be my darling mothers fate.

Mom long ago told me that her biggest fear was to lose her mind.  She shared with me when I was very young that she could imagine any challenge but that one and hoped a quick release from that type of a life were it to happen.  How sad it is to know there is nothing I would be able to do to help her avoid that existence, if she actually does live long enough to move into that phase of the disease.

Time does have an interesting way of creating a new perspective.  Who would ever have guessed that imagining my mothers death, that once created fear and thoughts of devastation, now years later would be considered a gift to spare my mother from that end of life expereince.

But like all phases of her Alzheimer’s I have witnessed, as we journey through this together, we do not get to pick which one will be her last. Mom will continue to move through to the next place in her dementia and with each step into decline, I will honor her wishes and hope each next one will be the last. A new perspective as unimaginable to me in those long ago sleepless nights as 200 million years of dinosaurs.  Hard to believe what time can do to life and how powerless we are to change it. Harder still to accept it….

Pain.  The universal equalizer. I have long known that without it of course there could be no empathy. Not an epiphany of monumental proportions, but one I learned at a very young age, so for me that lesson seemed very profound. I learned that from the ashes of pain and suffering can blossom a gift of understanding, compassion and connection for those with whom you share a common experience.

When I was eleven years old my little brother died of encephalitis.  He was only eight years old and it changed the family I had know for eleven years, forever. My mother and father never recovered to be the people I knew them to be before Mikie died.  Yet in that experience, an empathy grew within my young soul that I would never understand as a gift until I became much older.

We move on from pain, into a life of hope and belief for a better understanding or by sheer determination, to just survive. But unless we choose to end our lives, it does move on and we are forever changed from our painful experiences. This really is the life spring of empathy.

Empathy is a gift of monumental importance as we encounter suffering souls who cannot find a way through their pain without the love and the understanding of someone who has been in their very place once upon a time.  It is a rare time in your life when you can be quiet in the shared experience with someone and it can sometimes be enough for them, just to know you are there.

So since I started my new business of helping families to place their loved ones into senior assisted living facilities or board and care homes, I often find myself in situations that move me from sympathy to empathy as I feel the painful touch of reminders. Experiences shared, like the guilt of having to move parents out of the home where they hoped to live until they die, the passing of a father, or the heartbreak of caring for a mother with Alzheimer’s. Although at times heartbreaking, it has been my pleasure to be the person in the room to listen and help them move forward with compassion and understanding.

It would seem that all the experiences of helping others to make the next step, to help their aging loved one on their journey, would make me a natural to help mine. But the empathy I feel for others seems to dissipate into judgement as I contemplate the next move I am to make for the care of my mother.

After two and one half years of caring for my mother at home, I am now in a positions to have to place her into a memory care facility as a result of her Alzheimer’s. Heartbreaking does not begin to describe the pain of making such a decision after having my mother with me for these last few years.

I now echo the comments of feeling like a failure, guilty and selfish for making the move. Just like the people I help, I am forced by finances and circumstances to make a best decision that feels like no one wins, except a disease that has now robbed me of my mother, still and again.

It makes me angry that I find it difficult to have the empathy for myself I have experienced for others. Judgement seems to be the traveling companion to my empathy whenever it tries to reach out to comfort me. A reasonable mind can bring my thoughts back to the logical conclusion that it is time to move my mother from my home, but my heart still aches in response.

So I have to find comfort in the fact that it is my turn.  My turn to walk the path I so carefully help others to navigate to find a safe place for their loved one to land. My turn to let strangers care for my mother and have faith they will do it much better than I probably do. My turn to transition from caregiver back to daughter again, as I help my mother move into the next steps in her journey. My turn to face the reality that I cannot escape the ravages of her disease, but I can hold her hand, sing her songs, continue to try to keep joy in her life and always be there to remind her that she is loved and not forgotten.

Maybe one day soon it will be my turn to learn the lesson of humility. That you cannot be all things to the people that you love, no matter how hard you try to make it so. Maybe then I can sit quietly, with a little empathy and let judgment pass me by.

To my Mother’s new caregivers:

There is a life inside
A child, a bride
Successes and failures
Humility and pride
Look Deeper

There is a life inside
Experiencing a new day
Full of shadows and sunlight
Walls lining their way
Try Harder

There is a life inside
Fear sharing with joy
A journey together
Made difficult to enjoy
Be Kinder

There is a life inside
Beginning meets end
A mother, a daughter
A wife and a friend
Show Respect

There is a life inside
Remember today
A smile or a touch
Some kindness to display
Give Love

By Monica M. Flynn
A Daughter

 

 

 

When I first started caring for my mother and discussing with friends about the challenges of caring for her at home, the ones who had children would often look at me with sympathetic expressions and say, “It is kind of like having kids isn’t it? They just take over you life. It is so hard!”

Having never had children, this comment always created a feeling in me that was a mix of confusion and inadequacy. It sometimes made me feel inept, that I never experienced the personal sacrifices others went through as they raised their children that, according to these friends, would have better prepared me for the ones I am making today. Like somehow having kids would have made me a seasoned caregiver with better tools to do the job I am doing with my mom.

Then one day, when someone with children repeated that common refrain of similarities between caring for kids and moms with dementia, I looked a them and commented, “Well I never had children but I imagine much of the work that you get with them is accompanied with a tremendous amount of joy.” When she gave me a quizzical look, I went on to explain that most of what I witness with my mother is a loss of ability, memories and functions. There is no celebration of new lessons learned and joy in watching her experience new things. It is mostly  witnessing a slow decline. So the work is never the reward of watching someone grow into a new person but the loss of one. With that cheerful contrast we both laughed and agreed having children is definitely more fun.

Now two and one half years into living with and my mother and dealing with her  Alzheimer’s, I have come to realize that caring for somebody, whether it is children, parents, spouses (and sometimes dogs)  is a called a labor of love for a reason. One is no greater sacrifice than the others. None is without similarities and differences. Time outside of yourself in the service of others has its joys and its sorrows and they are found in many moments throughout your day.

And so I found one last night as I was helping my mother dress for bed. I was pulling her shirt over her head and it got stuck. We laughed and she commented “It is like having to dress a baby. But you don’t know what that is.” I was surprised and replied, “Good memory Mom. You remembered that I didn’t have children.” We pulled the shirt off her head and she looked and me and said, “How sad.” I smiled and replied, “Yes it is a regret. But you had kids do you remember that? Did you enjoy it?” Mom said in a voice full of emotion, “Yes it was so wonderful.” She looked up at me as she sat on the edge of her bed, and with a far away look in her eyes she smiled and said, “It was my life!”

 

 

One thing that is hard to grasp when trying to understand people who have Alzheimer’s is that their decline in cognition goes hand in glove with physical changes in the brain. Besides plaques and tangles that can interfere with neurotransmission, the brain actually atrophies and develops big empty spaces, especially in the temporal regions of the brain. That is the area that is most responsible for memory.

So imagine a thought, firing along the neuro pathways toward the area in the brain that fills in the pieces that provide a memory, only to arrive at a hole. Does the brain redirect and look for another way to the places that are still available to give that thought substance? What about when those memories are now forever lost in the hole? What information does the thought then choose to latch on to make it complete? Now realize that this all happens in nanoseconds, the part where the brain picks different pieces of information to fill in the blanks to create a memory, ask a question or create conversation. To complete a thought.

That is the life of a person with Alzheimer’s. Working with a brain filled with blocked pathways and holes so they are unconsciously recreating their reality every time they try to retrieve information. The brain fits together the pieces of memories like a puzzle. To you and I the picture they are presenting is a jumbled mess, but to them it often seems to make perfect sense. Not only does what they pieced together make sense, but most importantly to them, they need you to understand it to be real.

In the spirit of full disclosure it is more experience than science that brings me to the conclusions of why and how Alzheimer’s suffers communicate. It is the countless hours of spending time with my mother and her deteriorating brain and her efforts to make sense of the world that has given me a hint of how and where the puzzle pieces, that don’t seem a fit to me, look and feel good to her. Memories lost necessitating new ones created, give her a reality that enables her to still coexist, find a place to fit in and still be relevant. It happens unconsciously I am sure, but it speaks to the dignity that we all strive to maintain as sentient beings.

To take off the heavy edge, my reality is that some of the new and jumbled pieces my mother creates can make a brighter place than the memories and habits of old. For example, every time she has a Haagen-Dazs chocolate covered ice cream bar she exclaims that it is the best thing she has ever eaten. When I walk out of the bathroom after a shower she will point to my head and say “Oh look, your hair is smiling!” Everyday I come home from work she greets me like I just came back from a lengthy absence and is so excited to see me. Any bright colored clothing I wear is the most beautiful thing she has ever seen. Trees blowing in the wind are talking and that makes her happy. She smiles and waves at almost everyone at a restaurant like she knows them. Paper plates are to be washed and put out in the sun to dry. Sometimes they are to be displayed on her dresser because the flowered patten is so pretty. Dogs and cats can eat, sleep and behave however, and where ever they want. The only down side to that new reality is it has to have limitations and THAT makes me the perpetual bad guy, but the animals all adore my mother!

All the new is not fun, but conversely some that was lost is not necessarily missed. I have a choice in what to enjoy, I try to embrace the inevitable change and give myself permission to be upset when this new reality is not easy. But in the end, because my mother no longer has a choice in how her thoughts are constructed and her memories created, it is my greatest hope to help to maintain her dignity. Regardless of how a person with Alzheimer’s pieces and puzzles together their new reality, the parts of who we know them to be are still in the mosaic they are creating. It’s our job to remember for them, and love them just the same.