Dementia


For 58 years, my mother was married to an alcoholic. I suppose in the last five years of his life, he didn’t do much drinking. Because of the dementia. He died in October 2012. Complications from dementia. My mother’s oldest son was an alcoholic. He died in April 2012 of cirrhosis and hepatitis. My mother’s youngest son, also an alcoholic, entered rehab after Christmas. I set up an intervention. He seems to be doing well.

My mother no longer has anyone take care of. To enable. My oldest brother is gone. My father is gone. And my remaining brother is in treatment.

My mother spent decades managing the fallout from my father’s binges. The fallout from his rages. And then caring for his every need when the dementia got bad. She spent decades helping my brothers sort out their messes. She kept them both employed at my father’s business. She made sure they could pay their mortgages. Their car payments. She made sure they got to the doctor when things got bad and they needed treatment. She at times took them to appointments. These were grown men. My brother died at the age of 56. My other brother is 52.

My mother has been a raging codependent cubed (to the third power) for decades. And now she has no one to fawn over and control. What can she focus her attention on? Who will fill the void?

It seems I am her new recruit. But she’s going at it differently. She’s now become the needy dependent one. She insists on talking to me on the phone every day. Every single damn day. And if I go out after work, she’ll call me over and over until I get home and call her back. She’ll leave three and four messages in an evening. I try to throw up a boundary.

“Mom, I can’t talk to you every day. I’ve got other things going on some days.”

“You can find five minutes.”

“Mom, some days I just want to come home and relax. I don’t want to talk to anyone.”

“Well, all I want is five minutes, and then you can relax. I raised you and took care of you for years. Now it’s your turn to take care of me.”

Recently, I tried to encourage her to stop calling me over and over.

“Mom, calling me multiple times and leaving multiple messages is not going to make me able to call you back any sooner.”

“I don’t care. I want to talk to you and it makes me feel better to keep calling.”

The last time I spoke with her, on Wednesday, I managed to get a call in to her before she called me.

“Oh, you didn’t forget about me tonight.”

She then went on to tell me how upset my brother is, how discouraged he is. He has canker sores in his mouth and the doctor isn’t taking care of it right.

“You need to call your brother and talk to him. He’s upset. But I can’t say anything to him about it because you told me not to. So you need to call him.”

“Mom, have you been to an Al-Anon meeting?”

“No.”

“I gave you the schedule. You could go during the day. At lunch time. You could use the support.”

“I’m not doing anything else. I’m not doing any more than I’m already doing.”

“Mom, I can’t talk to you until you go to a meeting. You need to start going. I can’t be your counselor. And I’m not Steve’s counselor.”

“Well I’m not going. I don’t need to. I don’t need that.”

“Mom, call me when you’ve gone to a meeting.”

“Well if that’s what you want to do, fine.”

And she hung up on me. She hasn’t called me since. My mother is punishing me for trying to set boundaries.

I’d forgotten how truly nutty my family is. I knew from a distance they were running the same old scripts, over and over and over. But I hadn’t been in the middle of it for many years. For years I’d kept my distance. And no one bothered me. No one tried to suck me back in. My mother was too busy focusing on my father and two brothers. But now I’ve got no cover. I’m an open target.

Because I’m resistant to filling the open role, my 76 year-old mother is giving me the silent treatment. But I’ve worked too hard for too many years to allow her to suck me back in.  I’m standing my ground.

I’ve been avoiding the page. Hiding from the depths of my grief. Doing anything to pass the time, but write. I know that writing will take me deeper than even looking at photos of my father. I fear the writing will be unbearable.

I find myself thinking about my last night with my father. The night before he passed. The night nurse’s aide was someone new. As my family left that day, I told them that if they wanted to be with my father when he passed, they should stay that night. The aide glanced over at me, and nodded. She could tell from my father’s breathing that he was close. And somehow, I just knew that night would be his last. My family said the nurse had agreed to call them if he showed signs of being close. They thought they could get there in time.

On some level, I wanted them to leave. I wanted to spend my father’s last moments with him alone. I wanted to complete the vigil that I’d begun with just the two of us. I also wasn’t sure they could bear it. I think they felt the same.

My father hadn’t had a shave in nearly a week. He never grew facial hair. Except in the summer when we were in the woods at the cabin. When I was little, I used to stand next to him in the bathroom while he shaved, and watch. He used an electric razor. He’d put the cover on, hand the razor to me, and tell me to give it a try. I’d run the razor over my face. Then he’d take the cover back off, and let me shave him. Yes, my father was very fastidious when it came to grooming. He always carried a comb. He’d comb his hair before we went into a store, and ask me how it looked. Some might say he was vain. Some might say that’s where I got my vanity. I knew he’d not want to leave his body covered in facial hair. So I asked the nurse’s aide if she could shave him.

“Yes, I would be happy to. I used to love to shave my granddad,” she said.

I’m not sure what happened the night before he died, but he looked years younger. It wasn’t just the shave. All the lines on his face had faded.

More scattered thoughts.

I watched the sun rise while I held my father’s hand and waited for my family to arrive the morning he died. For two hours, I sat and held his hand. I didn’t want to leave his side until they arrived. And I worried that his hand would be cold when my mother took it. I needed to keep his hand warm.

He died at 6:00 a.m. sharp. That seems incredibly significant. I don’t know why. Perhaps because it epitomizes the orderly way in which he lived his life.

It’s been thirty-eight days since my father passed. His body was cremated that same day, and we held a memorial service two days later on Saturday. We sat in the same church, in the same row, where we sat six months earlier when my brother died. Only this time, I sat on one side of my mother, and my sister and her husband sat on the other where my father had sat holding my mother’s hand six months earlier.

There is so much more to write about. The details of the service and the reception afterward. My exploration of consciousness and whether it exists independent of the death of the brain. (Yes, I want there to be something more than this life.) The beautiful Saturday two weeks later when we scattered the ashes of my father and brother in the Gulf.

It’s time to write.

It’s been twenty-four days. And still, I’m raw.

My father hadn’t eaten or had any fluids for four days, and even then it was minimal. I found myself Googling how long a person can live without water. The consensus seemed to be five days maximum. How was Dad hanging in for so long? Not that I wanted him to go. I didn’t. But I knew it was inevitable, and despite all the medication, I feared he was suffering.

The hospice doctor prescribed Morphine (pain), Ativan (anxiety), Haldol (tremors), and during the last two days, Phenobarbital (tremors). He was comatose. But there did appear to be moments of lucidity.

On the last day, Wednesday (the fifth day in hospice), his eye was no longer cloudy. His pupil seemed to be following my movements. (His left eye was covered by a black patch, like a pirate, due to recent eye surgery.) Having watched over him night and day with only two breaks (for a shower), I was sensitive to changes. Changes in his breathing. Changes in his facial expressions. Changes in his skin color. His hand strength. His anxiety level. On the fifth day, he was calm, and his eye was clear. It was late afternoon, and everyone had gone home for the day but my mother. She stayed late that day, although she shouldn’t be driving after dark because of cataracts.  She’d been putting the surgery off because she was caring for my dad, who couldn’t be left alone since the Alzheimer’s had progressed.

His eye was clear. He was following my movements. I told my mom I was going for a walk and that it was a good time for her to talk to Dad. I told her I was certain he could hear her at the moment. I left the room to give her some privacy. I walked out the back door and into the parking lot. It was a clear, cool beautiful day. I hadn’t been outside in some time, and it was a bit startling. I walked. And sobbed. And walked. When I went back into my father’s hospice room, my mother was sitting quietly, holding his hand. I looked at my father, and could feel he was gone again. But out of the corner of his eye, a single tear had leaked.

“He heard you, Mom. I’m certain.”

“I know,” she said.

She hadn’t seen the tear until I pointed it out to her.

Perhaps it was coincidence. Maybe he’d had tears before and I just hadn’t noticed. But I don’t think so. I was noticing everything. Hypervigilant.

I told my mother to prepare herself. It was going to be that night.

“No,” she said. “It’s going to be tomorrow, when I’m here.”

She left me to the sound of my father’s breathing.

His breathing had accelerated that day. It was much faster. It was rhythmical, like a pant. It became a part of the room and filled it. I turned on the television to drown it out. I muted the television so I could hear it. I sat with my father, holding his hand. I retold all the stories I’d told him over the past four nights. This time, I wasn’t as certain he could hear me. But I sat with him, holding his hand, and repeated them. And cried. At 1:30 in the morning, my nephew arrived after getting off work. He is the first male grandchild, and named after my father. And his father; my brother who died six months before in April. He held his grandfather’s hand and talked quietly to him for some time. Then he pulled up a chair and we talked into the early morning hours. When he left several hours later, he urged me to get some rest.

I took my father’s hand and told him I was going to try to sleep for a little while, and that I’d only be a few feet away on the sofa. I kissed him. I told him I loved him.

I listened to my father breathe, as I dozed.

I was awakened by the sound of my father wheezing, or gasping for breath. I was frightened at first, and then I relaxed. I knew, shortly before 6:00 a.m. on Thursday October 18, 2012, it was time. I rushed to get the nurse. She was dozing. I put my hand gently on her shoulder and woke her.

“He’s breathing different. Very loud.”

She grabbed her stethoscope and as we entered the room, my father exhaled. I took his hand. The nurse took his other hand. She listened to his heartbeat with her stethoscope for what felt like minutes. I waited to fall apart. I waited for the inevitable breakdown. But I didn’t feel broken.

She looked up at me.

“Is he gone?”

“I’m sorry,” she said.

“Will you call my sister?”

She nodded her head and left the room.

I expected to fall apart, sobbing. But I was filled with joy. The heavy oppressive feeling in the room lifted in a whoosh. It felt as if energy swept toward the ceiling in a great rush, leaving me calm and filled with peace.

I sat there, holding my father’s hand, wondering why I didn’t feel broken. Why I felt blissfully happy. Was it relief? I didn’t think so. The feeling was much greater than relief. It was euphoria. It was utter joy. And the energy shift in the room. What was that? My experience was ineffable.

I knew suddenly that I’m not as smart as I’d always thought. I don’t know everything, after all. There is something more to this life than what I can grasp with my rational mind. What happened at the moment of my father’s death, I’m not sure. What I am sure of is that it was a good death. I am sure that death isn’t a horrible end filled with nothingness. I have no idea what happened in that room as my father’s heartbeat faded away. But I am certain now, there are mysteries I cannot comprehend.

My father’s time of death was exactly 6:00 a.m. on Thursday, October 18, 2012. I held his hand and watched the sun rise. I imagined that his sunrise on that day was infinitely more spectacular.

The sun is beginning to rise following the third night of my vigil. The days spent in my father’s Hospice room with family and friends are precious. But it is the nights I spend alone with him that I find to be the most precious gift. Caring for him, protecting him, comforting him, like he did for me in so many ways over the past 49 years.

I love to hold his hand and tell him stories. Paint him pictures of the time we spent together. The weekends we spent sailing on the Gulf. His passionate instruction on how to point into the wind just right for the optimal speed, the bow slicing through the water. When he corrected me, and I’d turn the tiller to head into or off the wind, I often heard, “You’re over-correcting!” That’s a lesson I never got quite right, in many aspects of my life. But I vow to keep trying. I spoke to him of Galveston, Ontario, each of his Black Labs, in turn:  Rebel, his dog we got in North Carolina. (Although my brother claims Rebel was his dog because he waited to see him before he passed.)  Then came Nugget, named by my mother with the idea that he was black gold. Nugget loved to dive to the bottom of the deep end of the pool to fetch his conch shell. And then he’d bark relentlessly until you threw it again. The game could go on for hours, interrupting my sunbathing when he’d jump in with a splash, and then shake the water off on me when he got out. It was a game, and I know he did it on purpose. Last was Lacy, Dad’s first female, and his favorite. He’d lay on the floor with her and cuddle, saying, “Who’s Daddy’s little girl?” When she got old and arthritic, he had an acupuncturist come to the house once a week and treat her. His heart broke when she passed a few years back. I knew Dad needed another pet, so I arranged a cat adoption for him from a Houston rescue organization as a Christmas gift. The cat he chose (and he was by then a young cat, not a kitten) was a Snowshoe my mother named Spotty, although I always insisted his name was Spot. Spot is a cat’s cat; strong and powerful (and, yes, a wee bit chubby). He likes to throw his toy mouse into the air and catch it, and then wrestle with it while rolling around on the floor. Like my dad, that cat oozes character. He’s got more character than any cat of mine. (But they are better cuddlers.)

I also tell Dad how much I love him, how much I’ve always loved him, how I’ll always be his little girl. His baby. His Puddle Duck. I tell him, between sobs, how much I’ll miss him. I promise to take good care of my mother (a job I haven’t done too well in the past) and Spotty. (Yes, I’ll call him Spotty for my mother.)

I feel lucky. This time with my father is the most precious gift. There is no where else in the world I want to be right now. I won’t leave. I’m staying beside him until he’s ready to go.

There was a shift last night. I feel he’s preparing to let go. My mother’s greatest task today, she knows, is to tell him it’s okay, she’ll be okay, he can let go.

Dad is now in inpatient hospice. We moved just down the hall from his rehab room at the nursing home. Hospice has a small wing here, so the move was only minimally stressful.

Yesterday, before the hospice room was ready, Dad had lots of visitors. My favorite visitor was Freddie, my niece’s 7-month miniature long-hair Dachshund. Freddie got in bed with Dad, and Dad and he cuddled. Dad loves animals more than any man I’ve ever known. He passed that love on to me.

When we got the news that inpatient hospice had accepted Dad, my sister cried for the first time. Death is imminent. Her husband comforted her, and in that moment I remembered the man I knew before my niece told me what he’d done to her. I understand the conflicting feelings everyone has about him. I didn’t want to, but it was there. Things were easier when all I saw was the man who’d hurt his daughter, my niece. But this is not about him. This is about my father.

I walked next to him in his bed as the orderly wheeled him down the hall from rehab to hospice, and I felt that the nurses I passed knew I was walking toward the end. “Dead man rolling,” I thought. And then, “What a horrible thought to have.” I held back the tears until we got situated in the room and the orderly left. My mom came shortly thereafter with most of his things. I went down the hall and picked up the rest. The man who was sharing the room with us has a wonderful private nurse that we’ve gotten to know over the past few days. She was instrumental in giving my mom the straight scoop on the feeding tube. Because she’s a private nurse, she could speak frankly. I was so grateful she did not equivocate, like everyone else is required to do. As I left with the last of my father’s things, she said, “Good luck.” It struck me as an odd thing to say when you’re on your way to be with your loved one while he leaves this earth. But what is right in these situations? There are no rules.

I stayed with my father last night while my mom went home to get some rest. Being the youngest, I’ve always loved those moments with my father when it was just the two of us. Last night was no different. I held his hand and told him about my kitties’ new mouse toy, How Sadie gets upset when I stop playing mouse. How she carries mouse in her mouth, upstairs into bed. I told him of the mocking birds outside the window in trees, of the wind blowing through the leaves, the storm clouds rolling in. As we talked, I held his hand and stroked his face. The nurses are taking very good care of him, making him comfortable with morphine and Ativan. I’m learning how to read his signals, when he’s in pain, when he’s anxious. And then the nurse comes in and gives him what he needs. Hospice is a godsend.

Visitors are beginning to arrive. My niece is bringing her puppy again.

My mother is a strong, brave woman. She set aside her desire to have my father here a little longer, and decided against the feeding tube. She said he wouldn’t have wanted it.But when we met with hospice, she couldn’t decide what to do. Tonight, after we left, they called and told us his kidneys are shutting down. We needed to have him sent to the hospital or choose hospice. My mother broke down. I held her and we cried. And then she thought of my father, the man she’s been married to for 58 years, and knew he would not want to go to the hospital. He’d want to come home. She chose hospice. I hope they can arrange things for him to come home in time.

My mother is right. My Daddy would want to come home. I am filled with admiration for her.

My Dad is dying. I spoke with the doctor today. He’d be gone within days, but my mother and siblings want a feeding tube. For now. So I pretended I want it, too. But I told them I’m worried “for now” will extend into something hideous. The doctor told me she thinks the tube won’t extend things for more than a few days. So I slid in line, and let them feel the decision was unanimous. Maybe I should be advocating for no tube. Advocating for my Dad. I wish I knew what he’s thinking. Or if he’s not thinking, what he’s feeling. But I don’t know what it feels like to be dying. I don’t know if I’d want a feeding tube so I could be here a bit longer. To give everyone time to say goodbye. If it’s only for a little while, am I being a coward for not advocating more strongly for no tube? Is it okay to pretend I’m on board if I’m only compromising for a few days of tube feeding?

The concession was, they agreed to hospice. They’ll take him with or without the tube, the doctor says. so I called tonight and made arrangements for hospice to evaluate my Dad tomorrow. And so I travel to Houston in the morning to meet with them. I’m secretly hoping that after we meet with hospice, they’ll change their minds about the tube.

My mother was shocked. She though he was going to get better. She thought he was going to go home and they’d be together for years to come. She honestly thought this. She had no idea he was this bad.

I wonder why I’m the only one who knew. I kept waiting for a doctor, any doctor, to say what I already knew. Finally, tonight the doctor told us.

I went to Houston last weekend to see my Dad in ICU. He had a large blood clot on his brain and had surgery to drain it. My Father has Alzheimer’s, so he could not afford more damage to his brain. Before surgery, he’d been doing okay. He was coherent and knew who everyone was. He could carry on a conversation and get around. He needed help with dressing and eating, but my mother was coping. She’s good at taking care of people. She’s a strong woman.

Tuesday is my Mom and Dad’s 58th wedding anniversary.

Right before they discovered the clot, he’d gotten much worse. He couldn’t walk. He’d lost control of his bladder. He was less coherent. When we learned of the blood clot, we had hoped the surgery removing it would cause improvement. At least some, anyway. It did not. He can’t sit up by himself. He can’t walk. Sometimes he’s coherent and I can understand what he says. But these times are the exception. When I first saw him last weekend, it was shocking. But I got used to his condition after a bit, and was grateful to be able to be with him.

Those few coherent moments brought joy.

We wanted to move him to an intensive rehab facility in hopes of his regaining some function. Because he cannot participate in rehab for three solid hours a day, Medicare won’t pay for it. The facility would take him. They said they could help him. But it’s very expensive. Just the co-pay is $4000 a month. So yesterday we moved him to a skilled nursing facility (nursing home). The hope is he will improve enough that he can go home (with home health care). I’m trying to stay positive, but find myself thinking he won’t be with us much longer.

Until this year, I’ve not faced my own mortality head on. I’ve not had to think much about death. I’ve not had to ponder the fact that our time on this planet is finite.

Years ago I’d eschewed my Catholic upbringing and decided there is no god. There can’t be. I read a lot of Christopher Hitchens and Richard Dawkins. I’d decided that no thinking person could honestly believe in god. My father was a strident agnostic. Although that seems a bit of an oxymoron. How strident can you be when you won’t get off the fence? A year or so ago, I asked him about it. He recanted. He said he was never an agnostic. He reminded me he went to church with my mother all the time. I thought he was merely placating her. I didn’t know he’d had a shift in his thinking. I didn’t like it. It made me wonder what I was missing.

This past week, I’ve found myself wishing I had faith. Yes, the old adage that there are no atheists in foxholes rings true. I want there to be more than our time on earth. I don’t want this to be all there is. I want it to mean more than you live, and then you die.

I envy people who have faith. Death wouldn’t be so difficult with it. Which I know is the paramount benefit of being a believer. But how can you fake it?

 

Yesterday my father was doing well and the doctors were pleased. The physical therapists were able to help him sit up in bed and move to the wheelchair, where he sat for half an hour. He had a fever in he night. The doctors don’t know what caused it. Today he couldn’t sit up, even with help. He never made it to the chair. The tremors are back.

The good news: they found no more cancer around his eye. He knows my mother’s name.

My mother says the house is too empty. Too quiet.

I’ll drive to Houston in the morning to see him. To comfort my mother. I fear she’ll be comforting me.

I love my father. More than I knew.

I’ve been working lawyer hours the past couple of weeks. It’s been a welcome distraction. And I’ve used it as an excuse to not write anything other than lawyerly documents. But it’s a rainy Sunday. It’s  time.

There’s no word yet on my father’s cancer and whether it’s spread. For some reason the MRI has not yet been done, although it’s been weeks since the initial discovery of the cells around his eye, and subsequent surgery. As I’m waiting to hear the news, I’ve been coming to terms with the fact that he likely won’t be around much longer. I don’t know what particular condition will bring an end to his life, be it the cancer, or complications from dementia, but it’s coming.

My mother is having a difficult time caring for him, yet she will not accept help from an outside caregiver. She blames this on my father. When I talk to him about it, he says if she needs help, he’s okay with that, as long as they’re not “messing with” him. But someone’s going to have to mess with him sooner or later. My mother is  near her breaking point.

I called my mother today to find out how the MRI went. My mother sounded hysterical when she answered the phone. She told me she had an “emergency situation” she was dealing with and couldn’t talk to me. From her voice, it sounded bad. Very bad. My niece took the phone from my mother, and explained to me that it was nothing serious. My father’s eye patch had fallen off and my mother didn’t have supplies (or the skills) to replace it. So she called an ambulance. And then she called my sister. In tears. My mother does not cry. The only time I recall seeing her cry was when her mother died nearly thirty years ago, and at my brother’s funeral in April.

My  mother can no longer take care of my father on her own. Since the eye surgery, he can’t see. He can’t feed himself. So my mother feeds him. He can’t go to the bathroom. So she helps him. And because he has a bladder infection, she has him wearing diapers. He’s wetting through the diapers. He can’t walk from one room to another. She has him using her wheelchair. (She’s currently ambulatory, albeit with the help of a walker.)

No wonder my mother is crying. She is utterly overwhelmed.

I feel I willfully have been ignoring how dire the situation has gotten. Every time I have called, my mother sounded as if she was managing. Or that’s what I told myself. My father kept saying he’s fine. She’s fine. Ridiculously, I believed him. Even so, every time I called I told her it was time she got some help. She told me the same thing she’s been telling me for years–your father won’t allow it. He no longer has a choice.

I’ve begun the search for a good home elder care service. My employer has an assistance program to provide information and referrals. I hope to get something set up by the end of the week.

Getting busy and finding a solution for their care is not enough to distract me from my thoughts.

My father cannot go to the bathroom without help. He can’t see. He can’t feed himself. He’s wearing diapers. He’s in a wheelchair (even though he can walk).

Would it not be better if the cancer has spread? Would it not be better for him if he were to die sooner, rather than later, and end his life with some dignity? Or is just hanging in there, no matter how diminished his state, worth it just to keep living? To keep breathing? To be on this earth a little longer?

My father is not the kind of man who talks about these things. He will bear this burden on his own. And he will tell me he is fine.

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