Oh Lord….

I took mom to an adult family home yesterday. It was a nice place I had checked out earlier. Mom was nervous, but I assured her that no one was going to make her move anywhere against her will. The hospice chaplain met us there for moral support. He really didn’t do much, but for some reason I was glad he was there, in case we needed an impromptu, “Oh, Lord…”.

Mom had to go to the bathroom when she first arrived and immediately complained about the commode support chair sitting atop the commode.

“What do they think,” she said, “that we’re all six feet tall?”

She surveyed the bedroom and wanted to know if she could bring her bed.

“Where’s the shower,” she asked and was shown the shower, a short walk through someone else’s bedroom. About that time the lights went out (a blown circuit) and the owner had to leave for a minute to trip the breaker. That confused mom.

We headed to the kitchen via the living room and we sat down at the kitchen table where the residents eat their meals.

“These chairs are really uncomfortable,” mom said. “At my place, I use pillows.”

“We could get you pillows, or even a new chair,” I said.

Mom was friendly but wanted to make sure her needs could be met.

“I have lymphedema and I have a massage at night,” she told the owner.

The owner said she didn’t know how to do it, but she could learn.

“I wear support hose. Can you put those on?”

“Yes.”

Mom asked about nighttime care.

“Well,” the owner said, “there is no one up in the night. I’m downstairs and there are no call-buttons.”

I told the owner that mom could get up in the night, but what about when she can’t. Thus, the reason to move her to a 24-hour facility.

“She’ll have to wear Depends all night. Would you be willing to do that,” she asked mom.

“No.” Unequivocal.

Then she asked mom what time she goes to bed.

“10 p.m.”

“No one is up after 9. My caregiver goes home.”

Oh Lord…

We decided that mom will stay where she is for the immediate future. I rescinded the 30-day notice I had given the manager and remarked that mom hadn’t fallen in more than a year. Dumb, dumb, dumb.

This morning I got a call from her Link to Life service. She had fallen and unlike previous managers, rather than get her up themselves, they called the paramedics. Good boundaries, but mom was none to happy.

After the paramedics came mom said she wondered if they were people who just went around picking up people who had fallen.

“They didn’t look like paramedics,” she said. “But either one of them could have picked me up and thrown me over their shoulder.”

The sales manager at the facility is a former social worker and has worked in the nursing home business. She told me that mom is in the right place

“If you move her at this point, she’ll probably die. At least now, she has some quality of life. And, if you leave her here, she could live another five years.”

Oh Lord….

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We all have a story to tell

Whenever I read a memoir I’m awestruck at the pathos and power contained within the human experience. Their stories almost silence me. Almost. The voice says, What makes your story worthy of being told? Because it’s my story and we love stories.

I got a degree in journalism to get a job, but mostly because I wanted to learn more about my craft, to learn more about story-telling, interviewing, and drawing people out to give them a voice and a venue for their story.  Now, I am challenged to draw myself out, to tell my story, not fearing repercussions or criticism if I tell a truth from my perspective that may not fit with someone else’s perspective.

A cousin and I no longer email. It was a relationship that had not quite taken root. He is seven years older and our families didn’t see each other that often when I was growing up. He was a Vietnam era jet fighter pilot, a commercial pilot after the war, raised a daughter by himself, and lived in another city. But he was my mom’s favorite “nefu,” and he loved her. Twelve years ago, my son and I visited him and my uncle, who was in the beginning stages of Alzheimer’s, and embarrassed us all with a dinner-table rendition of my father’s affair with my uncle’s wife (dad’s sister-in-law). It was a shocking dinner, let me tell you. After that my cousin and I exchanged some emails, family photos and stories, and eventually I told him about my blog.

Then the communication stopped and I have been unable to draw him out. I have wondered if the roots we had begun to nurture were not strong enough to withstand the storm of my truth about my mother and I, especially in some earlier posts. It’s a thought that nags at me. But I will not stop writing. Other family members may be upset by what I write as well. But I will not stop writing.

In her book, “The Power of Memoir,” Linda Joy Myers, writes, “… current brain research shows that writing changes the brain and creates neural pathways that help us heal and find new ways to live our lives. Research has also shown that writing integrates different sides of the brain and helps to contain the chaotic and random nature of memory.”

Chaotic and random is not so much my experience any longer, maybe because I’ve been writing for many years about my experiences: first in journals, then in essays, then in a blog. I’ve been determined to do as Myers says; to recreate my brain chemistry, but also to tell the story so that others might benefit from my story and then have the courage to tell their stories.

Even in earlier times, people used letters and journals to record their thoughts and feelings. Abigail and John Adams are a classic example of two people who used writing to get themselves through a chaotic time in history and their marriage. They were honest and outspoken, telling the truth of their lives to each other–and eventually to the world.

I’m no Abigail Adams, but reading about her I am quite certain of what she would say. She wouldn’t say, as others may attribute to that generation, “Be still. Do not share your truth. Be a proper lady.” To hell with that, I imagine her saying–in a ladylike way.

A good day

Mom was cheerful but tired when I went to see her. I weighed her and discovered that the hospice nurse’s scale really was off by 15 pounds!! You’ve got to be kidding. After I reweighed her on my scale she weighed in at a whopping 95, which sounded heavy after 83.  She’s only a few pounds less than a year ago, which is good news.

I also talked to the pharmacist about some pills mom has been taking. The bottle says “one to three” but mom has been taking three to five in spite of what any of us have told her. I said, “the pharmacist said take only one or two pills at the most,” and she said, “Well, if the pharmacist said,…”.

I also sat down next to her and asked her if I was bossy. She laughed and patted my leg and said yes. She also said, “Maybe I need some bossing.”

The everyday miracle in the midst of this journey is that we can laugh together. Mom still has a wonderful sense of humor and a smile to match.

I visited with a friend on the way home, catching up on our Christmases and collaborating on how we can hold each other accountable in the new year. She needs to keep her blood sugar in check. And I need to jumpstart my exercise program, especially with lifting weights.

Home tonight. Baking a chicken. Drinking a glass of wine. Reading a memoir, “The Color of White.” Hot tub later. It’s a very good day.

A fine balance

My first understanding about the changing perceptions of the elderly was when mom fell down 16 stairs when she was 90 and refused hospital transport, unaware of the extent of the bruising and abrasions.  I took her to the doctor the next day and they dressed and bandaged the abrasions. I called every day to see how she was doing.

“My ankle hurts some,” she reported. But when I showed up that Saturday her ankle was black and blue and swollen. She was unaware that an infection had set in, thinking instead that she had a slight sprain.  Cellulitis, they said, “a common skin infection” that had her on her back for a week with her foot elevated. The cellulitis may have been a precursor to lymphedema, a blockage of the lymph nodes which causes swelling because of an increase in fluid in the tissues, that has plagued her for 12 years.

Not that  I thought she had dementia, but simply a growing sense that she was more confused about her needs. An adult and aging social worker told me then that the elderly perceive pain differently and that they aren’t as aware of the repercussions of their healthcare decisions. That’s why it’s essential that the elderly have a healthcare advocate.

In her early 90s she also refused to have a doctor check out a scab on her nose, which was later diagnosed as skin cancer (twice), requiring in-patient surgery (twice). She refused to stop driving until threatened with the specter of killing someone in her old age. When I had a beautiful carved wooden cane made for her 95th birthday to give her more stability, I thought she was going to hit me with it. At the very least, she was angry.

When she was 96, she refused treatment for lymphoma (except surgery) until the ENT specialist threatened her with a horrible choking death. Some of her resistance was the feeling that she was an old woman and “what was all the fuss.” I understood that. But she finally underwent radiation treatment that arrested the cancer. When she has had strokes and required rehab, she would resist my desire to get extra help for her at home. When she continually fell I had to finally understand it was her right–except I was always the one picking up the pieces, hanging out in emergency rooms, wondering if I was doing enough to protect her.

It has been a gradual process–this making sure she is safe while she has her independence. Mom has demonstrated a remarkable tenacity to maintain the balance between disaster and independence. It’s because of her strength and determination–and it’s because I’ve had her back.

But now I have a growing sense that I need to back off and allow whatever is going to happen, to happen. Not ignoring, still protecting, but simply stepping aside and allowing. Perhaps when I stop controlling and enabling her in staying in what is an unsafe situation, things will change–finally.

It is a fine balance.

A mixed bag

I have been gently reminded to remember how much my mother loves me, to not put words in her mouth, to remember the good and her good intentions toward me. I do, but when writing the truth of each day, it’s difficult to do anything but to tell the story.

Mom did the best she could from the resources she was given. She served others, she loved others, she cared for others deeply. She is in many ways an amazing woman, one to be admired. She’s funny, she’s generous, she’s beloved. The fact that she let me and my brother down is not so much an indictment, but part of the ongoing story of our lives, the story of redemption and forgiveness in the midst of resentment and frustration. It is just the way of things.

The story of my daily walk with her is one of a million such stories, nothing so unusual really, it’s just that I’m being a voice for others who feel the same but who don’t have the wherewithal to say it, who live with it each day, wondering why they are so pissed off and exhausted caretaking a parent. There are those selfless saints out there who caretake a difficult parent. I’m not a saint.  I do care about my life, I do want time to spend time with Ben without always considering what mom’s needs are, I want to visit my son and take trips and not be always focused on whether or not my mom is going to fall in the night and break her neck.

It’s a mixed bag. Love, anger, gratitude, acceptance, resistance, determination, hopelessness, grief and joy. I can’t explain it, I don’t understand the finer mysteries of life and death and what it all means. I make sense of my walk by telling the story. That’s all.

Chapter 4: How to avoid a family crisis

The Rules:

Caretaker Sibling (CS): Do not call Faraway Sibling (FS) and tell him what you would like to say to Dearly Beloved Mother (DBM), even though you had no intention of saying it. It doesn’t help.

FS: It’s called V-E-N-T-I-N-G. Remember you told CS that she can’t do it alone and that when she needs to call and vent that you listen. Do not say, “My friend Joe had cancer and changed his dad’s diapers for four years.” This is not the time to insert P-E-R-S-P-E-C-T-I-V-E. It doesn’t help.

CS: Do not think FS is telling you that you should be changing DBM’s diapers and if you aren’t, you aren’t doing a good job taking care of DBM. It doesn’t help to get defensive and start yelling.

FS: Do not say, “But she was so giving,” referring to DBM. It doesn’t help. Especially when you understand past dynamics between CS and DBM.

CS: Do understand that FS has seen many people in the middle of different caregiving situations, some of which are worse, some of which are different, than yours. It’s not personal. Do not get defensive and start yelling.

FS: Understand that CS has been caretaking DBM for more than 18 years on many different (emotional, mental, financial, medical, physical) levels without the benefit of local family intervention. Do not remind CS that CS was the one who moved to another state, causing DBM to move with CS. CS understands this more than FS can possibly imagine.

CS: Understand that FS feels helpless and unable to really help given the fact that DBM will call and tell them how scared she is to move, that hospice is going to move her somewhere and she will be forced to give up her belongings. Understand that is their relationship and don’t think it’s personal. Don’t get defensive and start yelling.

FS: When CS gets defensive and starts yelling do not take it personally or think she has become unhinged. CS gets tired and is worried about DBM and the constant ongoing issues. Do not tell her that she needs to be able to discuss things. It doesn’t help.

FS and CS: Understand that each is doing their best functioning within individual and valuable roles.

Most important rule: Recognize the love.