We’re Getting Too Good At This

There are always new things to learn along this journey. From things like nuisance bleeding (which was really scary!) to how healthcare systems work and everything in between. Some how it makes me want to plan out every little detail for my kids should something happen to me. And maybe that’s not such a bad idea when you really think about it!

Anyway, today we had our weekly visit from the hospice nurse and I learned something completely new and frustrating. I haven’t done any research on the issue as yet, so I’m just writing off the cuff here. For one thing, Mom has to be re-certified for hospice every 60 days. (I already knew that.) The good news in that I suppose is that the doctor comes out to see Mom. We know that Mom is getting great medical care and we don’t have to drag her out in the cold or wet. That’s a real plus. On the other side of the coin though is the fact that there needs to be constant decline for re-certification. I understand that. At the same time, it’s frustrating to know that we come so far along the journey and nearest the end, if we reach a plateau, all the help comes to a screeching halt. It’s not like the patient is “fine” “doing well” or any of those things.

Currently the healthcare system is designed to get people on hospice when they need it. Once they are there, the road to continue care seems to get smaller and smaller. One of the criteria for Mom is arm measurement. It hasn’t budged lately. So how small can a boney arm get?! Isn’t there an endpoint? It already looks like skin and bone to me. I don’t want it to get any smaller! She will evaporate if it does!

Honestly, I think my frustration with the way this system works comes from my own insecurities about handling end of life issues. It’s comforting to have a nurse come in every week to check on Mom and just reassure us that we are doing the right things. Today when I heard that in Mom’s present state she may not be re-certified, I commented that it seems like we are giving Mom too good of care. Mom is well fed, clean and deeply loved. We make sure she is comfortable and as content as she can be given her circumstances.

She’s not covered in sores or smelling bad, her room doesn’t smell like a urinal and she doesn’t look like she is at death’s door. We do our best to provide an uplifting, pleasant environment and keep her as healthy as possible. Our nurses have been instrumental in our success. It is because of their guidance, suggestions and example that we have been able to provide to Mom the most excellent care we can give. Our hospice care nurses have been an absolute God send to us and we are extremely grateful to each of them.

Mom hardly speaks, she doesn’t move on her own, we use pillows to prop her up in the wheelchair at mealtime. She needs help feeding herself and we tend to all of her personal care. She’s contracting more and more every day. It’s to the point that when I looked at her from the back as she sat in her wheelchair I couldn’t even see her head at all. Her head hangs so low that it’s amazing that she’s able to swallow her food. I imagine her throat has to be at a 90 degree angle. She’s still in there somewhere, but this body of hers is literally curling up.

Mom’s re-cert won’t come up for five weeks. A lot can happen in that time, especially on this roller coaster journey. For the next five weeks we will have the peace of mind of knowing that we have help ready at hand. What a quandary! Of course I don’t want Mom to have to be in constant decline to maintain hospice care. I also don’t want to lose the guidance of our nurses.

I’m learning to let go of outcomes and trust God for what’s best. He’s equipped us to do this and ultimately He will equip us for the very end game as well. I’ve heard it a lot lately: God doesn’t call the equipped, He equips the called. So I’ll try not to fiddle with the fifth week from now. It’s in the future and none of my business at the moment. For now, it’s enough to do what needs to be done today, even if it’s only just sitting with her while she sleeps.

We may be getting to good to keep Mom on hospice care, but one thing is for certain. We are very, very blessed to be getting that good and we won’t compromise our level of care. She’s our Mom and we will continue to respect, honor and love her with the best care we can muster.

Contemplation

Some things you never get used to. I think it should feel nice sitting here across the table from Mom listening to smooth jazz playing in the other room while the rock tumbler steadily hums in the background. It sounds pretty peaceful doesn’t it? Add to that the fact that we live in the idyllic beauty of north central Minnesota. It should be perfect.

I watch Mom finger what we call her Food Deflection Unit (our fancy way of saying “bib”) and somehow my heart melts. I suppose it’s because as I watch her slowly push and pull at the cloth, straightening it out, bowing her head low and pausing as if in prayer, then starting the process over again, I’m thinking to myself of how she used to be.

Betty Smith was so vibrant and such a force to be reckoned with! At times she could be like a whirlwind with ideas and opinions and general conversation. She always had something to say about everything. She kept abreast of the news and current events. Her mind was always wrestling with something or other. I think one of the reasons she suffered with migraine headaches was because her mind was always working away at light-speed.

After retiring from her teaching career she was church organist for years. She would practice for hours sitting at her Wurlitzer organ, bouncing up and down. Often she would wear headphones but the clicking of the keys and tapping of the foot pedals could still be heard. Most of the pieces she played for preludes and postludes seemed impossibly difficult to me but Mom would bounce away, chewing on her tongue, studying the music intently, and practicing until she got it exactly right.

That was Mom. Getting things exactly right. Grandpa Jonas came over one day to teach us how to make lefse, the Norwegian potato flat bread. He showed us how to make the dough and how to roll it into little balls then flatten the balls into thin circles. I ended up with everything but a circle. Mom on the other hand managed to get a perfect circle every time. “Is this right?” she would ask, as if she really needed to ask. Her circles were even better than Grandpa Jonas’. “Ja, you did a good job dere.” He was from the old country. Her first time making lefse and she got each one exactly right.

That day if someone would have told me that Mom would be playing with a food deflection unit – no, if someone would have told me that Mom would even need a food deflection unit I would have laughed and said, “No, not my Mom. That would never happen to her.” I think we even call it that because we don’t want to accept the fact that Mom needs to wear a bib at meal time.

Today I watch her and realize again for the millionth time on this journey that we have no idea what lies ahead for us or those around us. It’s so important to make the most of each moment we have with those we love. We don’t think about that when we get angry with them. We don’t think about it when we take them for granted or take advantage of them. Or when we ignore them because they are getting on our nerves. We don’t even think about it when we’re having fun and things are going perfectly. Because life is good or maybe just because it’s smooth, or going along comfortably, we fall into the rut of believing that it will always be good or smooth or whatever way we happen to be comfortable with.

Maybe if someone would have told me that I would end up holding the tissue so my mom could blow her nose or that I would end up brushing her teeth or holding her cup while she drank from a straw or that I’d spoon feed her morning and evening pills to her, maybe I would have done things differently when she was a whirlwind.

Maybe I would have appreciated her more. Perhaps I would have sung more hymns with her when she was practicing for church. Maybe I would have made more lefse with her or cooked meals with her or worked in the garden with her or painted more pictures with her. Something. I don’t know.

What I realize right now, again, for the millionth time, as she plays with her food deflection unit, is that these moments count too. From time to time I find myself staring at the beauty of her hair. I love the way it glistens in the sunlight as if it’s lit from within. Those rare times when she looks at me I marvel at how clear and beautiful her hazel eyes are. Truly a miracle at age 89. She doesn’t smile often, but when she does her smile lights up the room and my heart!

Mom is no longer a whirlwind, she’s barely a slight, gentle breeze. Still, for me she remains a force to be reckoned with because she calls up so much in me and I seem to go so deep in contemplation because of who she’s become now in the twilight of her life. I’m learning lessons, important lessons as I sit in her silence and watch her mindless halting movements.

The hands that once played Vivaldi, Bach and Beethoven, those beautiful hands with the long delicate fingers have grown more beautiful and delicate. They now dance over the threads of a cloth, slowly, slowly. There’s no bounce left in her body. Only the occasional rise of her head that mostly hangs down, the rest of her, limp with age and forgetfulness.

What I realize again is that these moments count too.

Playing Favorites

Do you play favorites with your loved one? By that I mean, do you play your loved one’s favorite music and listen to it together? How about old movies? Do you have movie nights with popcorn or some other special treat and cozy up together?

The other day Minnesota Public Radio played Handel’s Messiah in its entirety. Unfortunately I was on the road at the time so I placed a call to my sister-in-law who was home with Mom and left her a message asking her to turn it on for Mom since it was a much loved favorite. For years, whenever we were together and the Messiah came on, we would listen to it. We both have fond memories of that particular piece of music.

When I was a child, Mom sang in the church choir. The music director, Walter E. Gossett was quite a character in my mind as Mom would describe him and how he handled rehearsals demanding perfection from each voice. What I remember most was her participation in Handel’s Messiah. That was one of the musical traditions that Mr. Gossett started at St. Mark’s Methodist Church in Chicago where we worshiped. It was also the piece about which he was most particular.

Mom loved working on the Messiah and though I don’t remember any one particular story, I do remember her excitement about it. I also remember her blue score. It was the size of a medium novel and I thought that Handle’s Messiah had to be a lot of music. We sang around the piano a lot as I was growing up and not one of the other music books she had was as thick as that score.

Fast forward to 1971. I was in college and learned that the choir was going to do Handel’s Messiah for the Christmas Concert. I had to be a part of that choir. I wasn’t confident of my voice – that’s a whole ‘nother story – but I knew I had to sing the Messiah. The short version is that I made it into the choir and was as excited and honored to be singing as Mom had been and my choir director was every bit as demanding of perfection as Mr. Gossett had been. It was one of the highlights of my life and I always hoped that one of my children would love it enough to keep the tradition going.

The point is, Handel’s Messiah is one of her most favorite works and I know that Mom loves to listen to it. I can see her lips moving as the songs are played. I believe it makes us both happy to share this little piece of our history. In fact, this afternoon as I was writing this post I looked across the table and asked Mom if she remembered singing the Messiah. She hesitated for a moment, then smiled. “Yes,” she said gently.

“Do you remember Mr. Gossett?”

Again a hesitation for a few seconds, then the light of remembrance shone on her face. “I do! Yes, I do remember Mr. Gossett.” Then a sad look, “You know he’s dead now.”

“Yes, I know. Did you like singing the Messiah?”

“Oh yes! Yes I did!”

Well, I hope this special season and always you are playing favorites for your loved ones. It may be the best present you can give them.

Amazing

Contemplation

Just about everyone who’s been around a newborn stands in awe of the miracle before them. Little tiny hands and feet, a miniature human, evicted from biological transitional housing and thrust into an unknown world. Yes, it is truly amazing.

Today as I was helping Mom eat her dinner my mind began to consider the other end of life. Mom just recently celebrated her 89th birthday. Quite a milestone for a woman who didn’t expect to get too far into her 70’s. Mom didn’t have any health issues to speak of, only a rather limited view of what was possible. Her father passed before he was 70 and her mom a couple of years later.

As I watched her eat, eyes closed as usual, I noticed all the little things about her: the moles on her cheek, one a bit larger and more pronounced than the other, the crease in her forehead from years of managing migraine headaches, the beautiful silver hair – she has the most beautiful hair I’ve seen – the shape of her ears, the hazel green of her eyes – still clear as ever – the flare of her nose, the color of her lips…so much to take in.

I sat there amazed. This being has been on this planet for nearly 90 years! Imagine all that she has seen and been through. Earlier today as I cut up a polish sausage to put in our grits, I thought about how Mom used to tell us the story of Grandpa buying a nickle’s worth of hamburger and making it go around to feed all six of them. That was during the Great Depression. She told me about learning to drive at 13 at a time when people didn’t need to have a license to get behind the wheel. So many stories.

I am amazed at how we have been constructed to withstand the test of time. Our bodies change, our minds may become our enemies. All kinds of things can happen, but when I think of the construction of us, everything that goes into making us last through all kinds of trials and tribulations, I am just amazed.

Certainly she is not the robust, opinionated, vivacious, organ playing, intellectual debater she used to be. In fact if someone told me how my mother would be in her later years, so frail and vulnerable, I would have laughed. There is no way we saw this coming.

Yet at the same time, this journey has allowed me to see things that I never would have noticed had she remained as full of life as she was. This journey has brought so many things into focus. It’s like driving along a road at high speed and seeing everything going by as one big blur and then slowing down to a crawl so that you get to see even the blades of grass and the pebbles. When you stop to notice, there is a beauty and awe in them that can only be appreciated when you stop long enough to contemplate.

This journey is not easy and it’s definitely not for the faint of heart. I refuse to think too deeply about what’s really going on. It’s too sad and depressing. Instead, I focus on the gift of slowing down, of living in a different world. In this world little old silver-headed, fragile ladies are just as amazing as those tiny bundles of newborn joy, maybe even a little more amazing.

Grits Ain’t Gravy

We grew up on grits. Mom used to tell us, “You need something that will stick to your ribs.” Well, when you’re a kid and take things literally that can be a rather scary prospect like – eat your vegetables, it will put color in your cheeks. But who wants green cheeks? Anyway, we ate our grits, and I don’t know about my brothers, but I didn’t really appreciate that cereal until I was fully grown.

Mom is not fond of oatmeal. She once said that when she was little she told her brothers and sister that oatmeal was snot and boogers. That didn’t stop her from serving it to us though. Oatmeal was another of those stick to your ribs breakfast choices. Pancakes and waffles were for Sundays mostly. I guess they just didn’t have the staying power of oatmeal or grits. My children also grew up on grits. Unlike their mother, they enjoyed them at an early age. Somehow grits managed to move over into the comfort food category for most of us.

Perhaps it was always comfort food for Mom. Her mother was from the South and grits were a staple there. In fact even now many restaurants in the South will serve them with just about any meal. I’ve never seen grits served in so many ways as they do down south. I never thought of grits as a side dish at dinner either. There are always new things to learn.

Well, lately Mom has taken another dive down the spiral of dementia. She hasn’t been eating well for the past few days. I was sick in bed so I was not able to help her at all. We usually serve her an omelet for breakfast because of the protein. We pack it with veggies and cheese so it’s nice and nutritious and it’s something she can eat on her own, but since she’s declined a bit more, she’s not eating on her own, and not eating much when fed.

This morning, I was feeling much better so as I was finishing up her oral care, which was a tussle because she isn’t holding her head up now, I asked her if she wanted me to make her some grits for breakfast. She lifted her head just a tad and nodded once.

So, Mom had grits for breakfast this morning. She ate a full helping which was more than I hoped for. There is a reason they call it comfort food. When all else fails, it’s the food that comes to your rescue. She ate some pizza last night. That’s her favorite dinner.

The way things look right now who knows how many meals she has left to eat. I did consider as I made her grits this morning that it could be her last bowl. I wanted them to be good for her. We are at that stage now. In my heart I want everything to be good for her because it may be the last she will have.

She used to say, “Grits ain’t gravy” and I never questioned what it meant. She could very well have gotten it confused with Titus Turner’s “Grits Ain’t Groceries” written a long time ago. The first line of the song goes: “If I don’t love you, baby Grits ain’t Grocery, Eggs ain’t poultry and Mona Lisa was a man.” I guess in the end it’s all about the love, isn’t it? Comfort and love. That’s all you really need in the end.

 

Chocolate and Flowers

Lately, Mom seems consumed by a cloud of melancholy. It looks like she’s slipping back into the space we visited last fall. Perhaps it’s the change of seasons that precipitates these darker days. I’m not sure. This has been a hard winter. Even now the temperature is below freezing – but it will get warmer later in the day. The snow is beginning to disappear and there is almost more bare ground than snow drifts. Almost. The clouds are not as thick today so the sun is shining bright. But the light in Mom’s eyes has not been so bright lately.

Finding something to lift her spirits and make her smile can be challenging. There are some folks who would just say, “Let her be and stop trying so hard. In the end nothing you do is going to make a difference.” And that’s true. It won’t make a difference. As I’ve said before, no one gets out of this life alive! By the same token, this journey can be traveled in lonely solitude, or I can accompany her on the road up to departure.

There are some things that cause Mom to smile though, that turn the lights on in her eyes. Saturday I told her that William was coming and he was bringing her a treat…chocolate! Immediately, her green eyes lit up and sparkled! “Oh, goody, goody gum drops,” she laughed! She was clearly pleased at the prospect of a visit from her grandson.

Every couple of month’s or so William sets aside time in his hectic schedule to come see Mom. It’s a long drive, though not terribly so, but to drive three hours to visit for just a few hours is a bit of a sacrifice. This is especially true since he’s a busy young man and considering that Mom does not offer engaging conversation. He jokes that the only reason she likes to see him is because he brings her chocolate and flowers. We both know that’s not true even if it seems so.

When he came and said hello and kissed her on the cheek, she smiled and her eyes lit up. Since day one, William has always held a special spot in Mom’s heart. When he was a very little boy he used to enjoy singing with Mom while she practiced her organ for the Sunday service. She was always so proud of the fact that he loved singing and did his first solo for the congregation when he was three years old. He was her sidekick – the yin to her yang! Grandmother and grandson, best friends for life.

Each time he visits, it’s special for her. Will and I sit and talk and Mom may look like she’s sleeping, but often she is listening to every word. Yesterday, he mentioned something about her sleeping while we talked, I told him she was not asleep, but listening. “Right Mom?” I asked. She nodded her head, “Yes, I’m listening.”

I’m grateful my son takes the time to see his grandmother. I’m grateful because it is a much needed gift that he gives her each time he visits. It means something to her that he comes to see her. She can’t express it, and it isn’t obvious, but it means a lot. Her essence is still in there. The part of her that makes her “Betty” is still alive and well, though it may not be able to communicate or express itself.

No one that I know of relishes being forgotten. Not really. Even the busiest people I know appreciate their down time, but they do not want to be forgotten or cast aside. It’s important that we remember this when caring for those who cannot interact with us they way they used to. It’s easy to assume that because Grandaddy can’t talk anymore and there is always a vacant look in his eyes it doesn’t matter if we include him in our active lives. Feed him, keep him clean and comfortable, that’s all that’s necessary. I beg to differ.

Grandaddy may not be able to respond to you in the way you are used to, but that doesn’t mean “Grandaddy” isn’t here anymore. I imagine it’s basically being trapped in your body. Your mind is working, you want someone to smile at you, talk to you, touch you in a loving manner. You still want to know that someone cares about you, but you are trapped and have no way of making your wishes known.

I’m grateful that my son gets that. He understands. So when he comes with chocolate and flowers, Mom giggles, “Goody, goody gum drops!” What a huge gift it is just to know someone “sees” you!

Walking on Eggshells

We now have a nurse come in and visit Mom on a regular basis. I find it comforting. It’s also affirming since she says that we are doing a good job with Mom’s care. Her care is no small feat seeing how Mom is unable to walk, my brother has to do all the transfers alone, she can only feed herself sometimes and she is generally listless. We’ve been here before.

Last autumn she was pretty much in the same state and I thought that those were surely her last days. I didn’t want to sound any alarms but I did let her sister know that perhaps it was a good idea that if she had plans on seeing Mom it would be better for her to come sooner rather than later. She was able to come out in a matter of a just a few weeks.

This was no simple trip for her either since she had to travel by plane from California to Chicago then backtrack to Minnesota and take a three hour ride from Minneapolis to the north central part of the state. Mom is 88 and her sister, though much younger, is not exactly a spring chicken either (though meeting her and talking to her you’d be hard pressed to tell!), but with the aid of her daughter, my dear, sweet cousin, she made a whirlwind trip that amounted to them staying a little more than just a day to visit. It took a lot out of my aunt, but what a gift they gave us in that brief, simple visit.

I hadn’t heard Mom laugh in months . . . at least. With her sister’s visit she laughed. Oh, she may have looked like she was asleep with her eyes closed and head down, but she was soaking up every word. We were startled the first time she laughed! We all laughed with her and it was cleansing and healing. She smiled, and grinned, chuckled and giggled, all with eyes closed and head hung low as her sister recounted some of the escapades of their youth and told stories of friends and family of years gone by.

We had a brief visit lasting only hours considering the number of miles traveled to make it happen, but that visit was such a healing balm. Somehow in those few short hours Mom was infused with new life. She ate better, stayed awake longer, talked a little more and I could see the light shining a little brighter in her eyes. That medicine took us all the way through fall and through a winter that has been interesting to say the least.

Now it’s spring. Or so they say. There is still snow on the ground and even as I write this, more is expected. There are no daffodils springing up yet. As I look out the window, I still can’t see the grass. It’s gray and rainy; a melancholy type of day. And now I feel as though we have come full circle. There’s a part of me that wants to say to friends and family, if you’re going to visit, you’d better do it soon. I don’t want to do that. I’m not going to do it. Hmm . . . maybe I already have.

The nurse suggested that it’s time to look into hospice care for Mom. It wasn’t an easy subject for her to bring up. Just before she began speaking I could tell she was searching my eyes, deciding whether or not she should say anything, unsure of how I would take the suggestion. I’m not sure, but I’d venture to say at one point I saw tears in her eyes. She was walking on eggshells. I assured her that there was no need to do that. None of us get out of this life alive!

The older we get the closer we come to the inevitable. The truth is we never know when the inevitable will arise. It can happen before birth or any time after that. Once conceived, we are bound to die. Mom was always vocal about her thoughts on death. From as far back as I can remember she never flinched at the thought of death – not hers or anyone’s. She always spoke of it as an unavoidable consequence of living. I won’t say she was obsessed by it, but eggshells were not part of the equation. Why would they be? Death is just a fact of life.

So, we’ve come to the part where we must sit down and discuss the prospect of hospice. Basically, we’ve come to the part where we sit down and talk about how to make Mom the most comfortable from now until the end. My guess is Mom wants us to face this head on and take care of business. For sure I know she doesn’t want us walking on eggshells.