Lessons

Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine.  We get up each morning, get dressed, eat breakfast, go to work or school, run errands, take care of the kids, make dinner, clean up, and go to bed.  Repeat.  It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing things around us really are.

And then, in the blink of an eye, everything changes.  We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.  And even as much as we might wish that things would go back to the way they were, things are changed.  We are changed.  And, for better or for worse, so is our perspective.

In a way, the holiday season was part of the repeating loop for me over the years.  Certainly the joy and the excitement were there, especially seeing the wonder and the happiness in the faces of the children in the family.  Looking back from this vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.  I worried about when and how the Christmas decorations got put up, I worried about having the “perfect” gift for everyone on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and I worried about making sure that my kids had an action-packed, memorable (at least what I thought was memorable at the time) holiday season.  A lot of the stress I felt during the season was admittedly self-inflicted.  And, as I see it now, a lot of it was unnecessary and unproductive. 

 As I got out the Christmas decorations this year, I thought about years past when I did the same thing and I thought about when my dad was sick.  The hustle and bustle was still present that year - it was just focused on a different set of priorities.  My kids did most of the decorating at my house that year; I was out of town helping to care for my dad a good bit during that the time.  I did 100% of my Christmas shopping online, much of it late at night in between conversations with Dad.  Some of the gifts did not get wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking shifts being with Dad who was in the hospital in the ICU at that point. 

I will never forget how awful it was being in the hospital that Christmas.  The hospital cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half after that.  The roads were icy and travel was precarious, and everyone in my family was so, so sleep deprived and concerned about Dad and about each other.  None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together and to do whatever we could to try to help Dad.

I thought about that a lot as I lifted each string of lights and each ornament out of the boxes again this year, and here’s what I realized:  As tough as things were that Christmas, not for one second did any of us lose sight of the value of being there together.  No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else.  Together we struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way.  The lessons I learned from all that we went through that holiday season are things that I am certain will never leave me – things like how it’s more important to focus on the joy and togetherness of today than to worry about the details of tomorrow, especially when much of tomorrow is out of our control.  Like how it’s important to ask for help when help is needed and how stuff is just stuff.  Like how when one of us is sad or exhausted or discouraged or sick or hurt, we are strong as a whole.  And like how, even in the midst of the everyday, it's possible for perspective to reflect the riches that we are fortunate enough to hold in the moment.

Open to Hope

Last fall, a blog entry that I wrote got published on a website called Open to Hope.

Click HERE to read the article.

A couple of days ago, I received an email from someone who had read the entry and had left the following comment:

I was so touched by your article and the statements from the other readers.  I am writing because my husband has a brain tumor, glioblastoma, perhaps what your father had.  This is heartbreaking for our twins age 19, away at college, and I am wondering if there are some things we should be doing now to prepare us for the special occasions, holidays and even just the really sad times when he is no longer here.  He is still fairly lucid and would be willing to do something to make it less painful for all of us but I would need to help him as his vision is very poor and he can no longer write legibly or use the computer.  We have come up with some gifts to give the kids from him when they graduate from college, get married have children etc, but there are so many other times in between the highlights of their life when they will miss them.  We had him with us this Xmas but it is unlikely he will be here for the next one.  We still have some time and I don't want to regret missing opportunities while we still have him with us. If you have any suggestions I would really appreciate it.  Thank you.

Wow, that's a tough situation and a difficult question to answer.  Knowing what a tough experience her family is having to go through is heartbreaking; it brings back so many memories and brings forth so many emotions from my own family's experience.  I want to help, but I'm far from an expert on the subject of coping; all I can do is to offer suggestions based on my personal experience and my perspective at this point on the timeline.  

I will tell her that my dad did have the same kind of brain cancer, glioblastoma, or "GBM" for short, an awful combination of three letters that brings devastation to people in a matter of seconds.  I will say that what I've figured out since my dad's death is that it is possible to pull out the silver linings of a terminal diagnosis; in no way does doing so diminish the pain and the hardship of going through it, but it does allow for opportunities to do some things that are very valuable, things like making memories, even just in the midst of everyday things, so that you can hold onto those (hoarding memories, as I have called it), things like helping the person who is sick tie up loose ends, and things like saying things such as I love you and I am a better person for having known you and thank you - and, eventually, goodbye.

A few books that may be of use in such a situation are Dying Well by Ira Byock, Final Gifts by Maggie Callanan and Patricia Kelley, and On Death and Dying by Elisabeth Kubler Ross.  I wish I'd read them in time to help my dad; written from a perspective of those who have done hospice work for decades, these books are full of information about what often happens when a terminal diagnosis is handed down.  

Something that I was surprised to learn after my dad's death is that there is a natural process that occurs as an individual nears death, and, while each person is unique, the dying process is nearly universal.  Many people find it helpful to know what to expect during a typical dying process. She can tell her husband that she is willing to discuss any concerns he may have or that, if he would rather have those conversations with someone else, she will find a person for him to talk to.  My dad asked me what I thought it was like to die, and, when I answered him, I tried to focus my answer on what I thought his main fears about the process were, which, for him, were related to pain and worries he had about leaving my mother and my siblings and me behind.  I don't know if what I said was right or not; I just knew that his distress needed to be addressed.  I can't imagine how scary it must be to have all those fears about dying and, even more so, to feel like you might inflict even more distress on your loved ones by voicing those fears.

But more than how to handle the logistics of her situation and the anticipatory grief and the emotions that come along with it in such a situation, this person is really asking two things: first, how can she help her husband emotionally as he prepares to leave this world, and, second, how can she help her children and herself, especially with regards to after he is gone?

First, let me say that, while the diagnosis of both her husband and my dad were the same, my family's situation was different from what it sounds like hers is.  My dad was "lucid," in that he could speak clearly and could understand the words that were being said to him, but he had fairly severe problems with his short-term memory and his attention span.  He was told by doctors that the prognosis was two years at best, but he was also told by them (and by us) that it wasn't unreasonable to believe that he could beat those odds, at least to buy more time.  There was a lot of denial by all of us, I think by the medical team too, about the fact that his time might actually be as limited as that general 1-2 year time frame, so much so that, coupled with the frantic pattern of caring for him 24 hours a day and the decline that happened so much faster than anyone would have ever believed, we didn't think much about those two questions while he was sick.  I wish we had; I wish we had had the time to figure some of that out.  All that to say, though, that what I have to offer in terms of ideas to address her concerns is from my hindsight type of perspective, not from what we actually did.  What we did do related to those two areas happened quite by accident.

I think it would be a good idea for her to talk to her husband about what his goals are from this point forward.  Like I've said in telling the story about my dad's illness, though, that Bucket List type of discussion is probably going be vastly different than it would be for a healthy person; the best you can do in such a situation is to come up with a Modified Bucket List to work towards.  Like my dad did, her husband is probably having to deal with medication schedules, doctor's appointments, and possibly some treatment plans.  Hopefully, though, unlike my dad, he has had less of a change in his physical abilities and his cognitive abilities, which may allow him to do some things like travel or even just socialize with friends and family without it being a major source of stress or a logistical impossibilty. Each person's goals are likely to be different, but clarifying them and putting them into some sort of order by priority and feasibility are important in any case.

There’s such a feeling of urgency when we are aware that time is short, and it can be overwhelming and stressful for a caregiver to feel like you need to fulfill every desire and help your loved one cross off everything on his to-do list in that limited time.  It's natural to want to make every day into a special event, but, as I have learned, very often the wishes of those who are very ill are much more simple than big vacations and major events.  I've heard of people hoping to be able to go to a family reunion, or to go camping, or to go horseback riding, or, like my dad, to go to a beach or even just to see a movie.  Sometimes even things like that require planning, and sometimes family members have to ask for help from others to make these things happen, but thinking in terms of lower key type of arrangements can give everyone something to look forward to and can serve as an opportunity for memories to be created.

That said, though, so many special memories can be created in everyday moments that sometimes it isn't necessary to plan something like a trip or a Bucket List type of adventure.  I have found that I am comforted by thinking back on the times my dad and I just sat around talking about the past or current events or funny things during the time he was sick; sometimes it's ok just to sit in silence and hold the person's hand too.  The everyday moments can be just as important as the big-deal moments; many times, just being present with the person who is sick can be comforting and meaningful for both of you.

In my dad's case, when he first got sick, we tried to view a day as A GOOD DAY as one during which he was able to do at least one thing he NEEDED to do and one thing he WANTED to do; later, when he was even sicker, in some ways I think we struggled to consider a day as a good day when he didn't have an overwhelming amount of pain (mostly headaches) and/or anxiety.  As we learned in a crash course, it's all about perspective.

People often seem to think that talking to someone with a catastrophic illness about their diagnosis or their impending death will upset that person more; however, from what I've been told and from what I've read, the opposite is actually true.  In fact, sometimes the person who is sick may be hesitant to bring up difficult topics like those with their family members for fear of upsetting their loved ones more.  But there are bound to be questions, and thoughts, and emotions that need to be shared, and sometimes a certain degree of peace can come from talking about those hard things or to admitting one's feelings about what is going on and what's going to happen.  The books I mentioned address how to broach those tough subjects in the most compassionate ways.  

In his book The Four Things That Matter Most, Dr. Ira Byock discusses what most people define as being the most important things to say before they die: "Thank you," "I forgive you," "Will you forgive me?" and "I love you." Two of the four phrases are about forgiveness, emphasizing how important it is to offer and receive it before we die.

I have heard that men and women have different types of end of life concerns.  Men seem to focus on finances ("Have I provided for my family adequately?") and things that are physically left undone at work and/or at home.  This was certainly true for my dad, and it caused him a lot of anxiety during the time that he was sick that only got worse as his condition did the same.  Women, on the other hand, seem to tend to worry about the emotions of their loved ones and the logistics of things, especially those things that they have taken care of for their loved ones, like gift giving and planning events.  I wish we had been able to address my dad's concerns directly in such a way that he could have understood and been comforted by that information, and I hope that is something that this woman is able to accomplish in her situation.

I love the idea of helping the person who is sick to buy gifts for people to be given at certain points in the future when he is not likely to be around.  I think that is likely to be therapeutic for both the giver and the receiver, and it's a very touching gesture that will comfort those left behind.

I also think she should have conversations with her husband about his goals for his legacy.  I think most people want to leave some sort of legacy in life; we all want to be remembered because being remembered means that our lives had meaning and significance to someone other than ourselves.  Maybe it's something he accomplished professionally, maybe it's something he did that will continue to impact people long after he's gone, maybe it's a character trait that he has that others can try to emulate, or maybe it's something else that he will be remembered for.  She should talk to him about how his legacy will be carried on in the future, even by people he doesn't know who have come into contact with the people who have known him (the "rippling" concept).  I suggest that she ask others in his life to tell stories about things they enjoyed doing with him, things they admire about him, things they will remember, and/or how he has affected them; as we found out after my dad died from comments made by many people who had known him, sometimes one's legacy is different than they or people who knew them in a different context may think.

I've heard that many people who are at the end of their lives tend to want to talk about their regrets, accomplishments, hopes, and dreams.  Doing a life review is a way to bring closure to the person who is ill, and it can also serve as a legacy of life to the person's loved ones.  There are several ways this can be recorded for posterity: 

*A MEMORY BOOK can be created in one or more different formats.  A simple photo album or a more modern version created online through Shutterfly or a similar website can be a wonderful memento.  A scrapbook can be made by using photos and other items like ticket stubs, menus from special dinners, or personal notes.  A book of memories can be completed by filling in information in a published book like THIS ONE or just by jotting down or dictating memories, thoughts, and ideas in a notebook a little bit at a time. 

*AUDIO TAPES can be a wonderful thing to leave to loved ones and may be able to be produced more easily and more privately than dictating for someone else to write down messages.  Loved ones often miss hearing the voices of their departed friends and family members.  By recording tapes for those they leave behind, terminally ill patients can know that whenever their survivors are missing them, they can simply pop in a tape and hear their voices.  I've heard of people who have recorded themselves reading favourite bedtime stories, singing lullabies, or simply talking for their children or grandchildren (or future grandchildren) to listen to later.  Tapes can be made for friends and family members, individualizing the messages for each recipient.  One thing I will say is that even though we didn't record my dad while he was sick, we have some recordings of his voice from before he got sick that are absolutely priceless to us.  

*VIDEOTAPES may be the ultimate way for the terminally ill to leave their loved ones with little pieces of themselves. Similar to the process for creating audio tapes, a video camera can be set up and turned on for the person who is ill and then the person can be given an opportunity to have his message delivered in private.  Again, different videos can be produced for each loved one, with the emphasis being on making them as personal as possible.  Parents who know that they will miss important milestones in their children’s lives can prepare videos offering the advice they had hoped to deliver in person. For example, a dying parent may prepare videos of themselves talking to their children about the importance education, being true to yourself, finding lasting love, or prioritizing the important things in life. More than anything, these videos should be used for the terminally ill to express themselves and the feelings that they have for those they will be leaving behind.  

*WRITTEN LETTERS (or those that have been dictated and then written on the person's behalf) can be used to offer kind words, to share advice, to provide encouragement, or simply to declare one's love for another person. Such letters are sure to be treasured and kept as special remembrances of a life that ended too soon.

It has been said that as long as one person holds memories of someone, they are not really gone. Losing a close friend or family member is one of life’s difficult realities, but most people keep their departed loved ones forever near by thinking back over the times that they shared. Creating tangible memorabilia can reinforce those memories, helping survivors to keep loved ones a part of their lives.

One more thing I'll share is a link to a website that has great info about how to cope with end-of-life issues for people with brain tumors:  BRAIN TUMOR HOSPICE.

In closing, I will say to the woman that, when faced with the most difficult situation that she has probably ever faced, all she can do is to try her best.  Accept help from others; ask for help when needed.  Keep a Notebook of thoughts, questions, appointments, inspirational quotes, anything that might be something she needs quick access to and/or that might be good to remember in the future.  Take photos of your husband along the way, with other people and by himself, maybe even of things like his hands or him facing away from the camera, to create memories in a visual format.  Make an effort to take note of everyday joys, don't be afraid to just sit silently and enjoy each other's presence, and cut yourself some slack and take a break on a regular basis.   

I am going to wait a couple of days before responding directly to her message, and I'd love to get feedback from others who have opinions about the subject of what else she may want to consider doing.  Please comment below if you have any ideas on anything else I should add!!

Not Knowing: Grandmom's Story, Part 3

Continued from Not Knowing, Grandmom's Story Part 2

In reading the book "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying," by Maggie Callanan and Patricia Kelly, I came across many things that spoke to me in regards to what my family and I had experienced during the end of Dad's illness.  I read the book with a goal of gaining some insight and perhaps even some perspective about my dad's death, and, in the process, I began to see that there might be another reason for the recent changes in my grandmother's emotional state besides the cognitive decline associated with her medical condition.

One section of the book is about things that may be needed in order for a person to die peacefully:

"Some people realize a need for reconciliation.  Some request the removal of a barrier standing in the way of a peaceful death. Still others need particular circumstances to die peacefully - perhaps choosing the time of their death or the people who will be there.

Realizing what they need, dying people often become concerned; some communicate a tremendous urgency.  Coherent requests usually bring action.  But requests that are vague or indirect may be missed or ignored, leading to frustration, anxiety, and sometimes agitation.  If the awareness of an important need comes late - when death seems to be imminent - the person may delay or prolong the process of dying in an attempt to settle an issue or effect a final reconciliatory meeting.

A person's anxiety, agitation, or prolonged dying can be upsetting for everyone ... Often, the response to agitation is to sedate the patient ... Sedatives may help relieve agitation, but medicines alone are not the answer."

Reading these passages caused me to see some things in a new light, not just about my dad's passing but about Grandmom in her terminal condition, including the fact that our decision not to tell her about Dad's illness or his death might not be the best choice.  According to the authors, "Sometimes a family decides to withhold info about the death of someone the dying person knows.  While this is typically done out of kindness and concern, the truth often brings peace instead of discomfort or upset to the dying person."

I shared that insight with my mom and my sisters, and we decided that Grandmom needed to be told about Dad.  None of us wanted to do it, but we believed it was in her best interest and we hoped the information would help to ease her mind.  As my sister Jennifer recounts, "We were so worried that she would get the idea that he abandoned her, that he didn't want to visit her again, or maybe even that he didn't love her anymore, and of course we wanted to do anything we could to prevent her from those thoughts, which of course were absolutely untrue."  We resolved to tell her the next time one of us could go with Mom to visit her. 

Shortly after that, on the Tuesday before Dad's burial was scheduled on Saturday, Jennifer arrived at our parents' house, and she and Mom went together to see Grandmom.  Here is Jennifer's recollection of what happened when they got to the nursing home:

We rounded the corner and saw that Grandmom was sitting up in her wheelchair, which was parked just outside her bedroom door.  We greeted her, and then I kneeled down right in front of her and held both of her fragile hands in mine.  I said something like this:

"Grandmom, I want to tell you something that might make you sad, but I feel like you need to know, and  I don't want you to worry.  Bill was sick and had cancer.  He went to the best doctors and the best hospitals, but, even as strong as he was, he was not able to fight off the cancer.  He passed away and is in heaven now with God and with Roy [our grandfather, Grandmom's late husband].  He is not in any pain.  You should not worry.  Vicki and Stephanie and Nancy and I were all with him while he was sick, and we took good care of him.  He always asked about you and tried so hard to come back to see you again, but he was too sick.  You were so important to him, and he loved you so much.  We promised him that we will take care of you no matter what. Then, when God decides it is your time, you will get to go to heaven and be with Bill and Roy again."

Somehow I did it without crying -- I just felt really focused on giving Grandmom some relief and definitely did not want to cause her any additional sadness or worry about why I was sad, and so I just talked clearly and slowly and looked right into her eyes and told her.  She wasn't really able to talk much, but she definitely seemed to be listening to me, and I truly think had a look of relief and understanding on her face after she heard the news.  She did not cry.  A little while later, when we left, I hugged her again and told her I loved her and that Dad loved her and that we did not want her to worry. 

In the days that followed and over the course of the next two months, the nurses reported that she was sleeping better and was much less anxious.  She required fewer medications and wasn't crying anymore.  We like to think it was because she understood that her son loved her until he took his last breath and that, given the information about what had happened to Dad, she was able to hold onto the belief that he had gone on ahead but was waiting for her in heaven. 

To Be Continued - Part 4 of Grandmom's Story, Coming Soon

Part 49 – Being Called Home

Continued from Part 48 

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.  It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.  – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.  

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.”  Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted.  My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.  

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone.  As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.  

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip.  Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all.  Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.  

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day.  I quickly hugged my mom and then went into my parents’ bedroom.  I saw my dad lying in the hospital bed – it looked like him, but it didn’t.  I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room.  A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”  I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were.  Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it.  That we had gotten here this fast, or at all.  That we weren’t going to be the ones to beat the odds.  As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital:  “It’s just too much.”  He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much.  What was happening was too much, and so was the grief, already.  Unimaginable, even in the moment.  All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing.  Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on.  For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.  

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.  Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties.  She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting.  She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did.  While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?”  I think I meant for Dad, but maybe I meant just in general.  I felt restless and so completely useless.  For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him. You have to tell him he can leave when he needs to.”  Oh, god, how I didn’t want to hear those words, but I knew she was right.  I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on.  Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands.  A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared.  Dad said he was so scared that he was going to be “counted with an odd number.”  He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost.  I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family.  I carefully put my head on his shoulder, and I said, “You can go.  But you have to come back to me!”  Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying.  “Oh, Dad,” I cried, “I know your body can’t do it anymore.  I know you are doing everything you can to stay here with us, but it’s ok if you can’t.  You’ve finished the race; you’ve done everything you needed to do, and we will be ok.”  He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too.  I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.  Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.  Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.  It didn’t seem possible, or real.

But it was real, and time was marching on.  The night-shift nurse came to replace Marilyn.  As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep.  It felt odd yet also comforting to have the night nurse watching over us.  Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing.  I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all.  It was the air, breathing, and being together with those we love that were paramount.  I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.  But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Up Next … Part 50 – Saying Goodbye

Happy Birthday, Grandmom!

My dad and his mom, at the library dedicated to her at her church

Today marks my paternal grandmother’s 91^st birthday, her first since she went on ahead. 

My dad’s mom, whom I called Grandmom, died on April 19, 2011, after an extended illness, a series of strokes that took her independence, her vitality, her dignity, and finally her life.

When she first got sick and it became evident that she could no longer live alone, even with home health services, my parents moved her from her small hometown in Alabama to an assisted living facility very close to their house in Tennessee.  At the time, Grandmom was sad that she had to leave her house, her town, her church, and her friends, but she trusted that my parents were making decisions in her best interest and that they would be there to take care of her, and they were.

A series of continued strokes pushed Grandmom along her downhill descent cognitively and physically in a relatively short period of time.  We still got brief glimpses of the smart, fiercely loyal woman she was before from time to time, and in those moments it was humbling to see how happy she was to have us visit and how grateful she was for anything that was done for her, especially to my parents.  My mom, her daughter-in-law for 43 years, so like a daughter to her, made sure that Grandmom’s hair and nails were “done,” as Grandmom liked them to be.  She bought new clothes for Grandmom and did her laundry every week, and she read to her and talked to her about current events and family news, both of which Grandmom loved before she got sick.  She decorated Grandmom’s room at the assisted living facility and later, after Grandmom declined even more, in the nursing home.  Mom was the one who noticed if Grandmom’s feet were cold or if the skin on her hands seemed dry and then asked the staff to be sure there were socks on her feet and lotion on her hands during the times we couldn’t be there.  She took care of Grandmom in many ways, and Grandmom and many others of us appreciated it more than words could express.

Dad played a different but equally important role during the last few years of Grandmom’s life.  He was her connection to the past, the one she always recognized and the person for whom she always lit up.  He was her bridge to socialization; he made friends with the other nursing home residents and the staff on her behalf and encouraged her to join in on the social activities scheduled at the nursing home.  He loved to escort her into the main room of the facility for special programs, especially the musical ones.  As usual, he provided kindness and comedic relief to everyone around, and, most importantly, he loved her unconditionally. 

At this time last year, just after Grandmom’s 90^th birthday, she took yet another turn for the worse, this time with significant swallowing problems and a cough that just wouldn’t quit.  Her doctor met with my parents and broached the subject of hospice support being provided in addition to the care she was receiving in the nursing home.  It was obvious to anyone who had seen the changes in Grandmom that, while she did have good care, she did not have good quality of life.  She had lost the ability to feed herself and now couldn’t even swallow without choking, which resulted in some of the food or liquid spilling over into her lungs.  It was clear what Grandmom would have decided had she been able to make that kind of decision for herself, and so, with a heavy heart for the loss of the woman she used to be, my dad signed the papers for his mom to begin receiving hospice care. 

The doctor told my parents that Grandmom could possibly recover from the cough but that she wouldn’t improve functionally and that she could be with us for a matter of days, weeks, or even a couple of months.  In the last text message I ever got from my dad, he told me about the hospice decision and expressed how sad he was that it seemed like she didn’t have much longer to live. 

But Grandmom surprised everyone; in fact, she did so more than once over the next six months.  She did recover from the cough, and then she took another turn for the worse on the day after Thanksgiving, this time coming so close to death’s door that the hospice nurse told us to hurry to her bedside to say our goodbyes.  She had the rattley-breathing and was unresponsive, and she hung on by a very thin thread for days before she rallied to her former state.  It wasn’t yet Grandmom’s time to go on ahead. 

And so, as she continued on hospice, we continued to visit her as much as we could, but, due to his time in the hospital and then in the rehab facility, Dad could not visit, as he usually did several times per week.  We told ourselves that Grandmom didn’t notice his absence; certainly she didn’t ask about him, but, with the nature of her own state of confusion, it was impossible for us to tell what she was thinking.  Dad worried so much about her, and he was relieved and grateful whenever we visited her and reported back to him that she was doing as well as could be expected.  It was one of the few things we were able to do for Dad during that time that made him feel a little better, and we were so thankful to have the opportunity to spend extra time with Grandmom and to do something to take away a little of his anxiety. 

By the end of November, Grandmom had healed from the infection in her lungs.  Her health stabilized over the next few weeks, but, devastatingly, Dad’s continued to decline.  It was so completely surreal for us to bring in hospice services for Dad too just before the New Year and then to have him go on ahead shortly thereafter.  How was this happening?  Grandmom had been so sick for so long, and Dad was the picture of health.  It was simply unbelievable to everyone who witnessed it. 

There is much, much more to The Grandmom Story, some from the time between when Dad went on ahead and a few months later when Grandmom did too and a lot more from her Real Life, before she got sick.

A couple of years before Grandmom got sick, she gave me one of the best gifts I’ve ever received:  a collection of several decades’ worth of journals that she had kept of her life.  I had been asking her about details of her life for a long time, trying to get to know her as a person not just a grandmother, and seeking to procure her history to learn from and to share.  She made a decision to entrust those to me, an honor which I do not take lightly.  I told her at the time that I would one day write her story.  She told me she would like that and even bragged to some of her friends about it.  Further down this road of grief, I intend to keep that promise and to share her story, which, by the way, is fascinating and full of surprises and, not surprisingly since she is indeed my dad’s mother, full of perspective and life lessons.  

 

Grandmom was a woman to admire, a person who touched many lives and who had a far greater impact that she could possibly have realized.  I don’t know if they serve birthday cake where she is now, but I do know that she is at peace and that she is most certainly with her husband (my grandfather) and my dad, and that in and of itself is cause for celebration for her.

                                                     Grandmom loved this song by Willie Nelson.