Tobe Jane…

It seems hard to believe how long Mom has been living in the nursing home – over 8 years now. When I think back to her first years there, I see my mom walking within the secured wing of her facility,visiting other residents by waltzing into their rooms, uninvited. For most families, Tobe was a welcomed guest whose gentle ways were comforting.  She added something to their visit and company for their loved one.

Often, the staff got to play a game I used to call “Hide and Seek, Tobe”; this object of this game was to find my mother, wherever she was hiding in the wing.  Sometimes, it was in someone else’s bed, sometimes it was actually under someone’s bed (don’t ask), sometimes it was sitting in a chair in the corner of someone’s room, sound asleep. Back then, I thought things couldn’t get any worse.  Although I saw people who were far worse off, ones confined to wheelchairs or beds, somehow, I could never imagine my mom getting to that point.

Mom also seemed to have an inner sense of which residents were going to pass soon; I really don’t know how she did it.  In those cases, mom would sit vigil in the resident’s room, watching over them.  Within the week, the resident would end up passing on, gone to a peaceful place. I assumed Mom would be doing this for all of her stay.

Then, almost 3 years ago, we thought Mom was approaching her final days.  She had acute renal failure and we thought for sure, that would be it. However, in true Tobe Jane form, Mom rallied and her renal failure was reduced to a normal decline in renal function.  The bad news was that from that time on, she has been confined to a wheelchair.

She has never been able to get around in the wheelchair alone, so her days of visiting people came to an end. Her “Hide and Seek, Tobe” was over too!  I’m sure the staff was relieved that they no longer had to search for her every day, but I miss searching for her.  I miss her seemingly calculated attempts to escape the locked down wing, following unsuspecting visitors through the doors before they locked behind them. I miss those days.

Mom turned 88 this past summer.  Her days are spent primarily sleeping with her stiffly contracted arms bent across her chest in her “mega” wheelchair which has cushions carefully positioned around her to try to keep her as comfortable as possible. Although she is mostly unresponsive, it never stops her from eating her pureed meals every day.

When I visit her, I walk her through the long halls of the nursing home where countless people stop to say hello to her; huge smiles beam from their faces as they cry, “TOBE!!!!!  How are you?” It is truly comforting to know that so many people care about my mother.

Often, I find a quiet place to sit and be alone with Mom.  I tell her all about my siblings, her grandchildren, and her great grandchildren. Stories of family events, things that happened at work, adventures with friends, conversations I’ve had with her friends, all pour out from me.  I sing familiar songs to her and kiss and hug her like she is a small child that I am trying to fill up with all of my love for her.  Often she wakes up, smiles, and tries to talk, but that is mostly impossible.  On rare occasions, she utters, “love, love, love” or even “nice,” but those words come less frequently.  I treasure the moments I hear her voice and know she is trying to tell me that she loves me and all the hugs and kisses.

So, what I’ve learned is that she is still in there.  Yes, I truly believe that.  She shows it in small, tiny ways, but I still see her in there.  Don’t get me wrong, I miss my mother so much.  In infinite ways, I miss so much about her every day.  I relied on my mother for so much in my life: unconditional love, moral support, counseling, advice. If she had just gotten sick and passed quickly, I don’t think I would have grown to understand myself and life the way I do.  Somehow, maybe this was part of her grand plan: to come into my life and let go ever so slowly, so I could learn important life lessons, first hand, along the way.  For this, I am grateful.  Mom always used to tell me that “patience is a virtue.” Well, Mom, I get it now.  Patience is undeniably a valuable asset; I am working on my growing virtue every day.


I went to the nursing home today, as I do many Sundays, to feed Mom lunch and take her for a walk around the nursing home.  Getting her out and around makes me feel like I did something good for her.  She spends her days in the same part of the nursing home, confined to her wheelchair.  When I push her out through the big, heavy doors to “see” the halls beyond, somehow, I feel as though I’ve accomplished something for her in her day.

The thing about those walks, which I now take on a regular basis, is how the staff at the home respond to my mom.  Love-filled “Tobe”s fill the air as people stop to say hello to her.  Staff that didn’t move with her when she was placed in the relocated locked down portion of the home are so happy to see her, to talk to her, and to share their favorite “Tobe stories.”  Today, the CNA who stopped to say hello told of a time that Mom escaped her lock down by smiling in a flirty way with a handsome employee who didn’t realize Mom had to stay behind the door she was trying to exit.  She laughed so hard as she reminisced about that escape.

The other night, my husband and I went to see her and feed her dinner.  After dinner, we went for a walk with Mom.  I wanted to show him how much her former wing had been totally transformed since she moved two years ago.  As we slowly made our way through that hall, I suddenly heard someone calling loudly from behind a glass window, “Tobe, Tobe…”  I looked all around me until I realized that a CNA who had worked with my mom for years was running towards us wearing the  biggest smile.  We embraced with such a warm, loving hug.  She had always been so kind and loving to Mom.  That is when she told me she had just  been looking at some photographs of Mom the other day and missed her so much.  It warmed my heart to see the connection she has with my mother.  Oh, don’t get me wrong, there are loving, caring CNAs with Mom now, but this woman’s love radiates from her entire being.  You can see how much my mother touched her life and how much she genuinely loves my mom. I love her for that! These walks are really good for both Mom and me.

By the way, the good news is that Mom’s renal failure is no longer acute.  It is just mild now, which means she is doing well.  I wish she could still walk around, but it is what it is, so we’ll go on with acceptance from here.

Since Late November…

Sometime last fall, my mother began to falter when she walked.  I would get occasional calls that she had fallen, was checked by the doctor, on a couple of occasions was double checked with an x-ray, and was fine.  Of course we were all concerned, but still grateful that she could walk and in a little denial that this was a sign of what was coming:  mom’s health was starting to fail and her Alzheimer’s was beginning to worsen.

Her health declined quickly over the next couple of weeks and after the nurse’s aides repeatedly complained to the nurse, mom was sent for a blood test.  By this point, her skin was tight and a bit yellowish and she was considerably more sleepy than usual. She was no longer walking and was transported to meals and “social” activities in a wheelchair. Then came the diagnosis: acute renal failure. The aides were crying (some actually sobbing), and we were bracing ourselves for what seemed imminent.  I posted my worries on social media, preparing my friends for why seemed to be at our doorstep.And then it happened: NOTHING!!!!!

Yes, you read that right!  Zip! Zero! Nada! NOTHING!!!!!  Oh, don’t get me wrong; things had changed quite a bit.  Tobe was no longer able to walk (which was her favorite thing to do all day); this prevented her from playing her favorite game – “Where is Tobe?”  That game was one she played with amazing skill, multiple times every day.  Anyone and everyone who had to get my mom for a meal, her nap, or to visit with her was a game challenger and the object of that game was to find my mother in as little time as possible. In the earlier days of her residency at the nursing home, she was in a much smaller wing of the facility, so it was considerably easier to find her, although in those days she was more skillful at hiding!  She was even found under beds and in other people’s beds (and on one occasion, sleeping on the floor of the bathroom) in a few rounds of the game.

The thing about her daily walking and “hiding” was that she really did connect with other residents. EVERYONE knew my mom: all of the staff (even those that didn’t work with her), all visitors, EVERYONE!  She would walk up to people and smile, pat their arms, and try to comfort them. She  loved to do a little dance with people who stopped in the hall to say hello, always trying her best to stay connected as best as she could.  I was told that on many occasions, my mom would be found sitting in the room of a dying patient, just keeping them company.  It was like she had an instinct for that – knowing someone was getting ready to pass.

Other things changed too!  Now they chop all her food which makes it look UNyummy (add that one to the dictionary 🙂 ), and her fluids are thickened (both of these things reduce the chance of her choking).  The upside is she still loves to eat and she actually drinks all of the disgusting fluids quite willingly.  We have noticed that she is starting to have a bit more trouble swallowing (a result of the Alzheimer’s), which, for now, I am choosing to be in denial about.  It is yet another sign of her decline, and I am afraid of how far she will fall before she passes on.  It hurts to watch her deteriorate.

The thing that hasn’t changed is how much she enjoys being outside.  The home has a beautiful view and on nice days, I wheel her outside to breathe in the fresh air and look around at nature.  She smiles, looks around, and then….falls asleep.  She is such a sleepy-head.

It has been 6 years since Mom started living in the nursing home, and I guess I didn’t expect her to last so long as to lose her ability to walk.  I was sure that she would choose to go before she wasn’t able to “enjoy” her days of walking, but I was wrong.  It’s a funny thing, but I almost think she chooses to stay to show us that life goes on, even when you think it can’t.  Yes, she is still in renal failure. Yes, she can’t walk.  Yes, she sleeps well over half of her day.  And yes, she can’t eat some of her favorite treats!  Yet, in spite of it all, she is still cheerful!  She still enjoys interacting with others.  She doesn’t complain.  She is a lesson for me in choosing to make the most of what you’ve got when you’ve got it.  She is filled with love.  She is filled with inner peace.  She is and always will be the woman I most admire: my dear mother, Tobe Jane.


A few months ago, I was sitting with mom, my arm wrapped around her rounded shoulders, when a young woman who was caring for a patient stopped to say hello. She told me how very lucky I was to still have my mom and began crying. She poured out her heart about how much she missed her own mother so much; apparently they lived together before her mom’s passing.

I reflected on our conversation for weeks. I knew that I was so fortunate to be able to hug and kiss her endlessly on my visits to the nursing home. That loving connection was exactly what I needed over the last few month: in August, I was diagnosed with a small cancer in the milk duct of my breast, and all I wanted was the comforting calm that my mom always provided. There is something unique in her presence that makes me feel strong, even when I feel scared.

I told her all about what was going on with me. Of course, she mostly stared off in space, but on occasion, she would nod her head as if to say, “I’m here for you. I understand.” I’ll never fully know her intention, if there was any, but it made me feel safe. I felt protected, somehow.

Over the following 3+ months, I underwent a minor surgery, and had 6 weeks of radiation therapy. Throughout the entire ordeal, I looked forward to sitting with mom, or taking a slow walk down the halls of the nursing home with her. I would reflect on all the lessons she taught me about inner strength. She would say, “What is this to eternity?”   I knew the lessons were right there for me in this lifetime

I am on the other side of a lot of the treatment now. I am strong and grateful. Grateful that they found it during a routine mammography. Grateful that they treated it and that I endured the whole thing. Grateful that my mom’s presence and her deeply embedded wisdom helped me see and feel all that there was to be grateful for in my life and in the lessons I was learning.

Staying Connected

About three years ago, I braved reading Still Alice, a book that takes you through the decline of a woman who has early onset Alzheimer’s Disease.  It was hard for me to read on so many levels: revisiting my mother’s descent into the disease; my own worries for myself, my husband, my children, my siblings, and dear friends; my current menopausal fog brain concerns.  It is hard to look at what you’ve already experienced on such an emotional level, but even harder to be uncertain of what is yet to come. I made it through the book and, in the end, found it to be a healing force and one that gave me strength in understanding that lives have many different journeys and in this life, my mom’s illness, my future, and the future of my family and friends have been and will continue to be whatever they are.

A little over a month ago, the movie, Still Alice, came out in theaters, and when my daughter asked me to brunch and a movie of my choice for my birthday, I felt pulled to see the movie. I knew I needed tissues, which, of course, I forgot to bring, but I was riveted to the screen as the familiar story unfolded. I found myself weeping, over and over, for my mom, stepping into her shoes long ago as she knew she was having memory issues. I had moments when I panicked, for myself, recognizing those moments of word retrieval issues that I have been known to experience, fearful that they could be more than menopause and overload.

The most poignant moment in the movie for me was when Alice, who had been a professor of linguistics at Columbia University prior to her need to retire, is giving a talk about her experiences with her declining memory and what it is like to have Alzheimer’s. She talks about the need to stay connected. Connected: the most basic human need.

I think my deep sense of understanding my mother’s need to be connected is what made this point stay with me. It has been something I think about a lot lately. It is exactly why I know how much it means to visit her. I see her trying to connect all the time. She walks up to everyone, sometimes rests her hand on their arm or shoulder, to say hello. She loves all the caretakers’ constant greetings, “Hello, Tobe,” as she walks the long halls. She tries to say things, and some real words emerge, “Good, good, good,” as well as gibberish. She often says, “I love you.” I think that she understands far more than she can communicate; at least it sure feels like she does. It is hard to know for sure exactly what goes on inside her head, but she does figure out how to do things and get places when she wants to.

However, there is one thing I really know for sure. I know for sure that Mom wants to stay connected. It is a basic need. She loves to be hugged, kissed, and held. She sighs and relaxes when I sit with her and have my arm around her or hold her hand. It is in those moments that I feel connected too. I feel connected to my loving mom, not in the old ways, but in these new ways, and for that connection, I am truly grateful.

The Flu…and Feeling Helpless

My sister got a call from the nursing home on Monday; Mom, they were pretty sure, had the flu.  They would swab her the next morning to confirm.  So, worried to death, the day passed with Mom in bed and the 4 of us being warned that many patients were sick with the flu, staff was wearing masks, and it would be best not to visit.  It felt like a very long day…but finally, we got the answer we dreaded: indeed, Tobe had the flu.

I kept picturing her lying in her bed, achy and feverish, confused and miserable!  It made my heart hurt to know that there was nothing I could do to help her and visiting didn’t seem like a wise choice.  The truth was, what would my visit do to help her feel better anyway?? I kept imagining a very long week of Mom in bed.  I called every night on my way home from school, always ending with, “Is the staff still wearing masks? Should I still stay away?”  Of course, I was encouraged to stay away to avoid contracting anything.

Yesterday, I called at about 4pm, which is when the nurse, Leonard, told me that Mom is up and walking around – no fever at all, no cough!  Hallelujah! I finally breathed a sigh of relief.  The bad news is that he still is saying to stay away, and since I am not a fan of the flu, obviously, I will wait a few more days and call back to get the status of her floor of residents.  It is so sad to think of them all suffering with the aches and pains of the flu.  I’ll be praying for their quick healing.  They are such a sweet bunch of people.

Maybe it is my age.  I am poised at the door to enter my senior years and I’m realizing just how fleeting life is.  When you spend so much time with so many people who can’t remember their lives, it makes you see the importance of enjoying your own life while you can.  Spending time with loved-ones, making a difference in the lives of others, living with love inside of yourself, and counting your blessings are essential ingredients to a fulfilling life.  I can honestly say that my mom did all of those things.  She lived a life filled to the top!

It is Christmas, again.

For the last 5 Christmases, my Christmas has included delivering trays of food to the staff at mom’s nursing home, to thank them for all their kindness and hard work throughout the year.  I am truly grateful for all the loving care my mom and the other residents receive all year-long from the dedicated staff there.  Since my mom’s wing of residents was moved to a larger area of the home earlier this year, there were so many new faces of caregivers.  It was so nice to see the genuine surprise and joy when I walked in carrying the trays of sandwiches and shrimp platters from our family.  Seeing their happy faces made my trek to Hackensack in the pouring rain worth it. Battling the parking lot at Costco and then getting soaked was really okay; their appreciation was so warm.

After my delivery was finished, I searched for my mom;  she was where I expected – sitting at a table, sound asleep.  I gently woke her up with lots of loud kisses and she spoke saying, “I love you.”  It isn’t often that she speaks and usually, if she does, it is fragments of phrases she can’t finish or nonsense words, but the one thing she is able to say is “I love you,” which is often followed with a kiss on my cheek.  It is such a gift each time it happens and I sure needed a gift from her this Christmas.  You see, Christmas was my mom’s favorite holiday.  My memories are so vivid of her decorating our home with such love and care.  She transformed our home into a Christmas wonderland of true beauty.  She loved going out to see the houses decorated, lights glowing, Santa’s ho-ho-ing.  She treasured walking in NYC each year, seeing “the tree,” walking though St. Patrick’s Cathedral, looking in the magically-decorated windows of the departments stores, and enjoying all the holiday treats.

I really miss sharing this with her, but I am so grateful that I did.  I see all these precious memories so clearly, and they fill me up with love and warmth.  She loved her family and sharing Christmas with us was one big way she showed it every year. I know how lucky we all are to have her as our mom.  Merry Christmas to all, and especially to my mom.

Settling in….accepting change

So, Mom has been in her “new digs” for almost 2 months now. It has been an enormous change for her and for our family. The new wing is triple the size of the one she was in before, so there is a lot of space for her to roam around in, which seems to suit her well. Overall, she seems happy and doesn’t stand at the locked doors staring into the halls that represent freedom. That is a good change! Everyone knows Tobe, and that brings her a lot of “hellos” from staff and other visiting family members. ALL GOOD!

Another great aspect of the new wing is the access to the outdoors. There is a BEAUTIFUL courtyard that has all kinds of flowers growing and lots of tables with umbrellas and chairs. She loves flowers and loves it out there. In addition, there is a porch with big, comfy chairs where Mom and I sit and look at the mountains in the distance, (okay…wishful thinking there….it is me who is looking, but she loves being outside). So, during the spring, summer and in early fall, we have a place to go get some nice fresh air, and my mom LOVES it.

Even though there are some ups to this new environment, some of the changes drive me a little crazy. Since she has been there, she has had 2 x-rays, (which never happened where she was before). Once, she fell out of a chair, because nobody was watching her as she fell forward while sleeping in the chair. The other occurred when a patient ran her foot over with their wheelchair. She had another wheelchair vs. foot incident that didn’t require and x-ray, too! This is where I get somewhat upset – okay, really upset!!!!! In the previous wing, most of the people couldn’t walk, nor could they propel their own wheelchairs. There were far fewer residents there, so they could be monitored much more closely. Mom was, in my opinion, safer. Here, they have mixed a huge array of dementia patients with a few typical older nursing home patients into a highly populated wing. Many patients push their own wheelchairs, and this has been the cause of my mom’s wheelchair mishaps. They tried to “pin Mom down” by literally keeping her in a chair against a wall, trapped by the table where she eats. After finding her like this on NUMEROUS occasions, and removing her from that place so she could roam free, and voicing our concerns, my sister arrived one day to express her thoughts on the matter. In a calm tone, she explained that this was unacceptable and she didn’t want to see my mom pinned against any wall again. They followed up by pushing the table against the wall, and mom has never been trapped again, thanks to my sister’s clear message.

Another change that has been a challenge is getting to know her direct caregivers. Before, we knew both her morning and evening caregivers quite well. We would see them regularly and check in with them for feedback about Mom’s days. After nearly 2 months, I finally have pinned down exactly who is Mom’s day caregiver. We had some serious concerns with her at first. Mom’s nails were filthy, which never occurred previously at the home. And when we were introduced to her, she said a brief hello, seeming uninterested, and moved on. I wasn’t even sure if she was still her caregiver, until this week. I went to help Mom with breakfast, and there she was, helping Mom. When I arrived, I said I would help Mom, so she sat with us, helping the other woman at our table. We really got to talk, and I felt so much relief in seeing how warm and kind she really is. Now, I finally feel some comfort and connection to Mom’s daytime caregiver. My goal is to meet here evening person and get to know her too. This is a very long road to getting to know all the people who care for my mom.

So, change is hard. I must admit I’ve never been good with it. Some of the changes have been good, and some aren’t. I can’t quite decide yet if it is more good or bad, so I am going to give it time. What I do know is that it is imperative that families visit their loved ones regularly, daily if possible, when they are in nursing homes, particularly if the person, like Mom, can’t speak for themselves. Our presence and willingness to communicate on Mom’s behalf, has affected her care in important ways. When they know you are looking, it matters!

The Nursing Home

Life has been very full lately. Between my teaching, my family, and my stepson getting married ( truly joyous event!!), I haven’t had the brain power or time to devote to my blog. I want to get back to this again…so here I go…

My mom has lived in the nursing home for nearly 4 years now, and judging by her excellent health, she may be there for quite some time. She is still ambulatory, walks the halls all day long, and is in remarkably good health. In addition, she is generally cheerful or at least peaceful in her demeanor. She is kind to people, in her own way, and I do believe she brings some happiness to the staff and some of the residents that are there. All of these things are blessings! When I am at the home, I see so many different people who also suffer from some kind of advanced memory loss, and some of them are so anxious and unhappy. It breaks my heart and realize that there is so much for me to be grateful for, even though my mother is declining steadily.

This past week has been particularly hard on me; the nursing home decided to move my mom’s entire wing of patients to a much larger wing on the other side of the nursing home. Apparently, there are so many dementia patients there, and they want them all in one place to better meet their needs. Now, as I’m sure you all have experienced in one way or another somewhere in your own life, even with the best intentions and efforts, the transition was not smooth at all. Although they tried to prep the caretakers (CNAs….I think it means certified nursing assistant), they did not really prep them enough, nor did they send enough of the staff who knows these patients, who can’t speak for themselves. My mother has two completely new-to-her CNAs, who seem very nice, but are a big change. Moving day was Friday; I arrived to an overcrowded room of some very confused people. The facility was still ironing out where to send the food for which patients, the nurse didn’t even know most of the patients in the room to administer medications, and my mother had not been put in for her afternoon nap. I took a deep breath and tried to orient myself to her “new home.” I went to her new bedroom, cleaned out some stuff since she has less storage in this room, and spent my time talking to Mom. I knew I’d be back the next day for the open house we were invited to.

The next day, some of the families arrived at about 11:30 AM for the open house which was offered to answer questions and address concerns. I was not surprised to find out that the staff was mostly unaware that this was even occurring. I felt so bad for one woman whose husband is a resident there. She waited for someone to answer her questions for quite a while, before I finally opened my mouth to get some answers. Then, the staff took a few of us to a meeting room to discuss the transition. They were kind and open to any concerns.

I must admit that I felt a little better after the meeting, but I am still concerned about the overcrowded room of residents. Let me explain: there are a couple of activity/dining rooms where they bring the residents daily. In the old wing, the room was smaller, and therefore it seemed much more manageable. This room is really quite large. Each resident has an assigned seat for eating. I can already see that they sat residents that were separated due to social conflicts in the previous dining hall back together in here. WHATEVER!!!!!

I do know that there are some lovely benefits to this new environment. There is a beautiful outdoor courtyard which will give all the residents a place to get some sunshine and fresh air, and my mom’s room looks out onto this courtyard; it really is so pretty! Since there are so many more hallways in this wing of the home, my mom, who likes to roam around and explore, has so much more space to do so. The down side is that when we get there, it will take MUCH longer to find her. I call it “hide-and-go-seek- Tobe”! You really never know where she may have sat down and fallen asleep. In addition, I made a point of meeting the director of the CNAs who introduced me to Mom’s new daytime CNA; they were both nice, so that is comforting to me. I know time is needed for everything to settle down, and it is just another piece of the experience of watching over a parent in a nursing home. I need to remember what my mom always said: “What is this to eternity?” and “This too shall pass.”


More mini pad adventures

I’ll bet nobody reading this knows all the uses of the female mini pads. I sure know that I didn’t know them until my mom revealed their many uses over the early years of her decline.  Let’s see….

Well, first there is the shoe liner.  Yup!!  You read right!  The shoe liner.  My mother used panty liners inside of her shoes!  I think the concept might have been to keep her feet dry if they perspired.  I’m not really sure.  All I know is that any time I helped her get ready for bed, they were in there!  Next, there is the bra liner.  Yes…of course.  You put one mini pad in each cup, under the breast! Walla!  Walla what?  I don’t really know.  Perhaps another sweat collector.

Then there is the panty liner stuck to the insides of her dresser drawers…here and there, seeming to have no rhyme or reason.  Try pulling those babies off of the wood…not as easy as it would seem!  

Oh yes…and then…get this one….if you have moles on your neck that you don’t like, you can cut one up into little pieces and stick them over the moles. Apparently, if you do that, no one will notice!  SERIOUSLY!!!!! 

What always amazed me was that she had really “thought out” what she felt she needed, (except for the drawer liners…still scratching my head over that one), and then decided that panty liners were the solution!  She couldn’t remember my name, but she could figure out multiple uses for those pads!  Go figure!