The Family Album

I’m jogging my memory by going through the family album capturing snippets of Mom’s life from a teenager at the beach with her girlfriends, to her wedding announcement, to her role as grandmother.

She was so beautiful; still is when you can look beyond the cancer that has changed the shape of her jaw and neck. I wish I had inherited her legs, which have always been slender and shapely even during the higher points of her weight yo-yo. She has always taken pride in her appearance and is always well dressed and coiffed.

I, on the other hand, have fought the pudge all my life. I can remember Mom taking me shopping for clothes as a teenager and helping me find styles that were as flattering as possible. When I was motivated to try to lose weight, Mom even joined The Diet Center with me and we celebrated each other’s half-pound losses and shared recipes (even tofu salad, which was supposed to look and taste like potato salad, but it didn’t fool me). Mutural encouragement to get fit and stay healthy has been a constant part of our weekly phone conversations over the years.

Pictures of Mom with her grandbabies brought back some of my best memories, as well as one of those traumatic incidents that ultimately increased my love and respect for Mom. It was after I had my first son. Mom, who lived close by, wanted to be helpful and asked over and over what she could do. I foolishly thought I could do everything myself and repeatedly turned down her offers. However, within a week of giving birth, I had a particularly bad day – fussy baby, inflamed and sore nipples, and a feeling of being overwhelmed. How could I possibly take care of baby, laundry, meals, husband, or myself? On top of all this typical post-partum dysfunction, I had promised my husband I’d help him with a little project, which under ordinary circumstances would have been no big deal. But on that particular day, Superwoman’s powers failed her.

I called Mom and begged her to come to my rescue. “What? Hold that precious grandson? I’ll be right over!” And she was. And she did. She walked miles through two small rooms trying to soothe that cranky baby while I finished my project and relaxed enough to produce milk for his dinner.

Sue

Let the celebration begin!

Why must we wait until someone is dead to celebrate their life? I’ve attended so many memorial services that were filled with funny stories and joyful remembrances, and often someone will say, “If only Aunt Ethel could hear these memories of her life…”

Why not let my dear mother in on some of the fun? We learned this week, during a three-day visit to the hospital, that Mom’s cancer is not only back, but it’s spreading aggressively. It’s already putting pressure on her trachea. There are lesions in her lungs. And the tumor seems to want to wrap itself around her carotid artery. Her life is now measured in weeks.

I believe Mom knew bad news was coming. Sis and I were prepared, too. But to uncover that huge elephant and see it plain as day was still a shock. The three of us cried and held each other and just wallowed in our mucky sadness for a little while. Sis and I assured Mom that we would surround her with love and make sure she was never in pain. It didn’t take Mom long to stop crying and ask, “OK, so what’s the plan?”

We’re still exploring our hospice options, the tangled web of Medicare, and other logistical questions, but we’re committed to making sure that Mom’s last weeks and days are filled with love and as many laughs as we can muster.

I’ve invited friends and family to write notes with some wonderful or funny memories about an experience with Mom. Why wait for the memorial service? That, of course, made me start thinking of my own stories. It’s not easy. Maybe it’s my own aging brain, but the experiences over the years are blurred into one big, happy mess and I’m having trouble pulling out incidents, much less the details, that made them special or funny.

But, that’s my job for the next… however long. At least one story a day.

Sue

"I won't sign"

Just because my 84-year-old father with Parkinson’s Disease, dementia, and paranoia won’t sign the papers making me and my sister his agents for healthcare and financial affairs, does that mean he has completely lost it? Is there some edge of reason in that degenerated brain of his where his doubts can be addressed, where he can be reassured and then make the right decision?

Or has the time come to let the court decide that he is incompetent to handle his affairs and needs a guardian? I don’t want to take that route if I can possibly avoid it. How can I appear to be his adversary one minute (if that’s how he views it), taking control that he fears giving up, and the next minute change his clothes and tuck him into bed with a good night kiss?

I sit across the table from him as he stares at the same page of the document for an hour. He seems to want to say something and I wait. As I watch him I pray, “God, please give him clarity, understanding, and the ability to communicate his thoughts and concerns for at least a little longer…”

It’s not working, God. I don’t know what your plan is, but it’s apparently not on my timetable. I’m feeling frustrated and angry. God, please give me an extra measure of patience and compassion this week.

Sue

Processing Loss

A divorce mediator once told me that the person filing for separation or divorce has most likely put a lot of time and thought into that action before taking it. He or she has already grieved the loss of relationship, while the other spouse does not begin the grieving process until the intent to separate is announced. The grieving may seem unequal, and indeed one may hurt more than the other, but it’s partly a question of timing.

So it seems with processing other types of loss. All these past three months, our family has been grieving Mom’s loss of vitality, independence, and cognitive function. And while we have hoped for the best outcome, I think we’ve already been grieving her inevitable death, whenever and however that may occur.

Thus, when Sis and I accompanied Mom to the doctor yesterday and heard the bad news that the cancer has returned, that Mom is not a good candidate for more surgery and might not be fit enough for radiation and chemo even if she wanted to choose those options, I think we were prepared for that truth.

I’m not sure about Mom’s processing. In recent weeks she’s said things like, “Well, the fun is over….This is the beginning of the end….I guess I’ll never be back here again (referring to her apartment)…” But after our appointment yesterday, she was visibly affected. It showed first as exhaustion, not surprising given the 90-degree weather and the long trip to the doctor’s office and back. Then, later, it registered as frustration and anger with the occupational therapist who was trying to engage her to exercise small motor and thinking skills with kids’ toys. And, by dinnertime, Mom could not, or would not, sit up straight in her wheelchair. Seeing her slumped over, not saying much, was heartbreaking.

I felt like she needed to process her feelings before talking about them, so I did not press her to talk about it. But going forward, I hope she will talk about her fears, desires, and yet-to-be-fulfilled dreams. Are there things she’d like to do and see while she is still able? How can we help her approach what lies ahead – whether it's more treatment or palliative care – with a sense of calm and completion?

We have another doctor to see – a medical oncologist – and then we may be ready to engage with hospice services.

Sue

Bathroom Epiphany

I woke one morning this week remembering that (once again) I had fallen asleep mid-prayer and, though I believe God knows what’s on my mind even after I fall asleep, I felt compelled to try to finish what I'd started.

As I prayed for Mom, I realized I was confused and conflicted about what to pray for. On the one hand, I want to help her hold hope for as complete a recovery as possible. In my mind, that would look like remission of the cancer, her ability to live as independently as possible, and to enjoy friends and many of her favorite activities, such as chewing real food, going out to lunch, and shopping.

On the other hand, I fear the lumps on her neck signal the return of the cancer, and I pray that she will not have to endure more surgery, the potential for pneumonia and other complications, a long hospital stay, and a repetition of all the physical and occupational therapies. A part of me wants to ask God to take his child as quickly and painlessly as possible.

A prayer for recovery and a prayer for release seemed diametrically opposed. It struck me as two different kinds of energy – the buoyancy of hope and the passivity of giving up. And, once again, I thought about the kind of energy I would want surrounding me if I were in Mom’s shoes. Hopeful, healing energy, please!

However, feeling my own energy draining, my hope for Mom’s recovery sagging, I wondered how I could possibly support her.

Later, in the bathroom – the room that so often inspires creative thinking – as I brushed my teeth, it came to me. Where is my faith if I can’t see the energy and hope and joy in life eternal? As my pastor said, as he preached on the joyous vision in Revelations, “what’s so bad about the end of the world?”

“Wait a minute,” I argue with myself, as my electric toothbrush buzzes over my teeth, “am I just rationalizing my apparent lack of faith and hope for her recovery?”

“Perhaps,” I respond. “But that’s the way we humans are created,” I tell myself. We are hard-wired to try to understand and explain the mysteries of our existence. We are created with the capacity to feel emotion and to want to feel joy. And, no doubt, there’s a certain amount of cultural conditioning going on here, too.

Finding the energy to surround Mom with hope – for whatever comes next – is a matter of resetting my own “faithometer.” It won’t be easy, but with God’s help all things are possible.

Sue

Losing Words

Just about everyone I know has what we all laughingly refer to as “senior moments." It’s a handy excuse for forgetfulness. But after three months of daily living with two people whose senior moments are legitimate and frequent, I am downright scared at my own lapses. Could it be I’m in the early stages of Parkinsons?

Last night, for example, we were out for a stroll around the pond and we noticed plugs of dirt in the grass. I could not for the life of me remember the name for that process – which is performed on my own yard every year – in which a machine takes out plugs of dirt so that the lawn can absorb more moisture and nutrients. Mom couldn’t remember the word either but after all she’s been through, I wouldn’t expect it.

Finally, after about three or four minutes it came to me – aeration – but by then I was ready to make an appointment with the neurologist.

I take comfort in the recent news that there are new medications and vaccines for Alzheimers on the horizon. I pray that my mental decline does not outpace FDA approval.

Meanwhile, I picked up a new book of Sudoku puzzles. I’ve never been fond of numbers, but I can handle 1-to-9. Does the fact that I can’t seem to get past the “easy” puzzles mean that I’ve waited too long to begin exercising my brain? If it’s words I’m forgetting, should I be doing word-memory exercises instead? Or, should I invest in one of those new brain fitness software programs?

I’ll bet it’s not compatible with my Mac.

Sue

Father's Day

How do I want to remember my father? That’s a question I’ve asked myself this week as I shopped for a not-too-sappy Father’s Day card. The card I finally selected refers to memories of good times with dear old dad.

That got me thinking about these and other memories – dunking doughnuts in Dad’s steaming black coffee when I was about three years old; going fishing and having picnics when I was five; trips to the ocean for summer vacations; playing poker for pennies (when I dealt, nearly everything was wild); intense political debates; having lunch with Dad near his office in bars where everyone knew his name.

I pray that those are the memories I will recall until and when I have very little memory left. Eventually, I want to forget most of these last few months as this dear man I’m caring for seldom resembles that other man. I want to forget the frustration and sadness of his physical and mental decline and remember the father who was my favorite dance partner.

Sue

Decisions, decisions

Note to caregivers: Don’t necessarily expect your elders to be able to make their own life and death decisions.

On Monday, I took Mom to meet with a radiation oncologist to explore the pros and cons of radiation treatments for someone of her age and condition. First, we met with a nurse practitioner who answered most of our questions. She left the most difficult question to the doctor – Given what you know about the pathology of her cancer, what is her prognosis with and without the radiation? The answer: “Without radiation there’s about a 50-50 chance the cancer will come back. With the radiation, the chance of it coming back is about half that.”

We also talked about side effects – damage (possibly permanent) to the salivary glands and taste buds, sore throat, skin irritation, and the exhausting trips to the hospital five days a week for six or seven weeks.

I wasn’t sure how much of this Mom was absorbing. We had brainstormed the questions in advance, but in the moment, she seemed too overwhelmed to comprehend. On the way home, I said, “Mom, you don’t have to decide right now; we need to talk a couple more people before we have enough information. But what do you think is the most important thing you heard today?”

“That doctor really didn’t say much,” she said.

“What about the nurse; what was the most important thing you heard from her?”

“Oh, she was very smart; she knew what she was talking about,” Mom said.

Later in the afternoon, I took Dad over to Mom’s room and with the two of them together told Dad what the doctor said. I thought by hearing it again, it would sink in a little more for Mom.

I don’t want to overwhelm her. I don’t want to depress her with cold, hard facts of her situation. But neither do I want to make this decision for her if I can help it. However, later, I told Sis on the phone that I’m afraid she and I will have to make all the important decisions – radiation, living arrangements, finances, etc. – and carefully present them in a way that helps Mom and Dad feel like full participants but also feel secure in the guidance and support they have from us.

The most important thing I heard at that appointment was the last thing the nurse said as we were leaving, “Whatever decision you make will the right one.”

Sue

Sing to the Lord!

Glory be! We finally made it to church! Somehow on Sunday the stars were aligned in such a way that Poppa was clean, dressed, and ready in time for the 3:00 p.m. community church service. We picked up Momma from the nursing center and formed our parade of wheelchair and walker through the building and up the elevator to the community hall where a local Baptist church was presenting the music and message.

We actually arrived early enough to hear the choir practice their songs. My father eagerly held a hymnal and awaited the announcement of page numbers so that he could sing along. As I listened to the choir, I could hear Poppa humming along in perfect harmony!

Now, my cousin and I had just the day before talked about how much we enjoy singing and how we wish we’d been blessed with an ear for harmony. We each struggle to hear, learn, and sing the second soprano or alto parts. And here was my 84-year-old father doing what for him comes naturally. Must have inherited it from his mother who could hear a tune and immediately play it on the piano.

Though Dad was prepared to accompany the choir, I explained that they would sing some songs by themselves and then we would be given a page number from the hymnal. Finally, it was our turn – page 13 – “Come Thou Fount of Every Blessing.” Everyone stood up and opened their hymnals. Mom and Dad struggled to stand, the hymnals dangerously impeding their ability to do so safely. I quickly took hymnals from both of them, pulled them to standing, found their page numbers, handed the hymnals back, and by that time, the hymn was almost over.

Darn! Why didn’t I think to tell them to just stay seated? Oh well, I thought, we’ll be better prepared for the next hymn. The pastor was easy to listen to and gave a good, brief message, then a prayer. Now, I thought, another song… But no, the music director had left early and I guess the pastor felt inadequate to lead a bunch of octogenarians in song (Doesn’t he know the Holy Spirit would have helped him?), so he blessed us and sent us home.

Even Mom said, “I was hoping for more music.” And I wished I could have heard more joyful harmony from Dad.

Sue

Two toddlers and a wheelchair

More than once during this elder care adventure I’ve been reminded of my childcaring years. There’s not a whole lot of difference on some days.

Yesterday, I asked Mom if she wanted to spend the day in her apartment rather than next door in her room at the skilled nursing facility. She gladly accepted the invitation. So we formed a parade – Mom in her wheelchair with me pushing, followed by Dad and his walker. Through lots of practice, we’ve learned how to get the parade through doors and into elevators.

Once in the apartment, Mom and Dad both took naps and I took a break (Remember how wonderful it was when both kids took naps at the same time?). Then, Mom wanted to get up and explore. Thanks to all the physical therapy she’s had over the past few weeks, she can balance and walk without help. Her stamina isn’t great, however, and I worry that she will simply wear out and crumble to the floor. So, like a nervous mother, I follow my little toddler everywhere.

Mom is still on a puree diet because she has not yet learned to align her remaining teeth to chew her food. Yet, she is tempted by all sorts of crunchy foods. As she stands at the pantry door, pulling down boxes of crackers and cookies, I’m right behind her, “Now, Mom, you know you can’t chew that…” (again reminiscent of my kids getting into things forbidden).

Meanwhile, Dad is shuffling around trying not to stumble over the wheelchair and walker that take up most of the free space in the tiny apartment. He needs to use the bathroom and I must leave the other toddler unattended to help him. When I return to the living room, I find Mom stuffing chocolate candy in her mouth. Seeing me, she quickly hides a piece in her fist where it melts into a gooey mess.

I guess this is the predictable cycle – children, then parents acting like children, and then grandchildren – ensuring you never lose your skills for hovering, guarding, warning, and then cleaning up messes.

Sue

The Gold Cross

Yesterday, Mom asked me to find her gold cross necklace that I gave her for Christmas. “It’s hidden with your other jewelry,” I told her. “But I’ll get it and you can wear it if you think you can leave it on at all times. Do you think you can leave it on even when you sleep or shower,” I asked. “Yes,” she promised. “It’s very important to me.”

A little later Mom asked me if there’s anything she should be doing to prepare for “what’s coming next.” That opened the conversation about radiation treatments and the questions we want to ask the oncologist next week. I was glad Mom wanted to talk about it, and she seemed very clear-headed and calm.

Then, I asked, “Momma, do you say your prayers at night?”

“Oh, yes,” she said, “and in the morning and at noon, too.”

I said, “Well, I’m praying that God will guide you to made the decision that’s best for you once we have all the information we can get.”

“Yes, that’s what I’m praying for, too,” she said.

The day before I had prayed for a clue to how to talk about prayer with my mother. Here was the answer. Thank you, God.

Sue

Tough Talks

As Mom gets stronger following her cancer surgery, and as the window of opportunity for starting radiation treatments closes, it’s time talk openly and honestly and to make tough decisions. What would the radiation do to her quality of life? How much would it help? Would she be buying only a little bit of time at the cost of great misery? What if Mom chooses not to have radiation? What is her prognosis? Will she be able to live at home again, or in assisted living, or will she have to spend the rest of her days in a nursing facility?

Even though Mom still seems confused at times about where she is, the depression/anxiety meds are keeping her level and calm. She will occasionally say something like, “Looks like I’m going to be here for a long time.” I probe, “What do you mean, Mom?” But she doesn’t continue the conversation, and I stop probing.

Next week Mom will have an appointment with a radiation oncologist to get the answers to these and other questions and to begin the process of radiation. This doctor will no doubt promote radiation as the appropriate course of treatment; that’s his job. But I want Mom to see that there’s another choice – the do nothing choice – and to understand the consequences for each choice.

I thought a more neutral doctor might be able to help, so I took Mom (with Dad tagging along) to see her primary care doctor. He more or less followed the script in my head: “You could choose radiation, but that’s not a cure…it’s only palliative. It may shrink any remaining cancer that’s there but won’t cure it. It may make you feel tired, but I’ve had no experience with that type of cancer and can’t tell you all the side effects. Or, you can choose to do nothing, in which case, I would probably recommend that you explore the benefits of working with a hospice organization, for which Medicare will cover the cost…”

Mom expressed some dismay over what the doctor said, to which he asked, “What did you want me to say?” Mom quickly replied, “No, I want you to tell me the truth.”

The doctor promised to visit her next week following her radiation oncology appointment to further explore her options and decisions. I like this doctor and believe he will be a comfort and help no matter what Mom chooses.

My job is to be ready to listen when Mom wants to talk; to help her find answers to questions; to help her get past her fear; to help her feel loved and cared for. I’m also one who prays (which is not to say others aren’t praying, too). I think about praying with her, as well as for her. But since we are not in the habit of praying together, I worry that she will think I’m trying to deliver some sort of final rite; would it comfort or scare her to death? Lord, give me a clue.

Sue

My Art Fix

I’m so fortunate that my little respite trip could include the Western Federation of Watercolor Societies annual show and conference. I’m sitting in a magnificent art gallery surrounded by the best water media paintings from the western states, and I can feel the inspiration seeping into my being.

Furthermore, I’m loving the opportunity to connect with my artist friends from home as well as to meet new friends from the art world. I marvel at the talent and hard work represented on these walls. But right now, given my preoccupation the past few months, I’m feeling envy – for the fun that went into the creation of these wonderful paintings.

I’ve thought about challenging myself to paint one small painting each day. All it would take is a bit of planning and organizing my materials and space so that I could set up and clean up quickly. But, I have so far rejected that idea in favor of writing. I perceive that I would have to trade blogging for art; not enough time/energy to do both.

Perhaps a compromise is in order. Since I write approximately every other day, maybe I can paint on the in-between days. And, if I can find a scanner, you blog readers may see the results. Stay tuned.

Sue