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The Caregiver

26

August 21, 2016 by Paula Reed Nancarrow

My Parents Celebrate Their 60th Wedding Anniversary

My Parents Celebrate Their 60th Wedding Anniversary, 2015

“Did I plug a cord into the charger for water?” my father asked.

It was the weekend before Mother’s Day. My sister had come over to help with the morning routine, and to give my dad a chance to take a shower. My mother’s Alzheimer’s meant she could not be left alone.

What on earth was he talking about? Whitney was used to not being able to understand my mother’s word salad; this was new. My dad’s question got written down on a list of other strange things he’d said and done recently. Mixing up my mother’s medications. Not knowing what day it was. Or time.

The day before he had gotten my mother up at ten and dressed by eleven. Whitney had intended to be there by 3:30, but was running late. When she called to tell him it would be closer to four, he informed her that he had put my mother in her pajamas and she was ready for bed.

Something was wrong. Very wrong.

She was taking him to the doctor on Monday. She would pull out the list then.

“Remember, she is coming today,” my father said. “No not today. It’s Saturday. Oh I am so mixed up.”

His face twitched oddly. His breathing was labored, his speech weak. He had no appetite, and toddled when he walked. Two days before, when my nephew had come to mow the lawn and had trouble starting the mower, my father had gone out to show him how, fallen on the grass, and had to crawl to the mower to pull himself up.

After his shower he fell asleep in his recliner almost immediately.

Whitney made my mother lunch. And texted me her lists.

I read them.

Oh dear. Oh dear. I don’t know if this can wait until Monday.

I think it can. Emergency rooms are terrible, especially on the weekend. It will go a lot better if Dr. Terry admits him.

She was right.

My baby sister – nine years my junior – had had a lot of experience with emergency rooms in the last few years.

She's not so much a baby anymore...

She’s not so much a baby anymore…

Every time my mother had a “fainting spell” from which they could not revive her, she ended up in one. Often my mother would be back to normal (well, the new normal) by the time the ambulance arrived at the hospital. Then there would be hours waiting to be admitted, and a series of tests that would find nothing.

Usually they’d keep her overnight, speculate on medication interactions or a drop in potassium, and, after a long discharge process, finally send her home. My father had come to hate hospitals. Complaining about what they did wrong was one of his chief sources of entertainment.

The truth was that if Whitney suggested a trip to the hospital, there would be a nasty fight, and my father would refuse. The weaker he got, the more in charge he insisted on being. And no snot-bubble kid was going to tell him what to do.

We had all been urging him to hire another home health aide, but my dad balked at this.

It had taken all Whitney’s powers of persuasion, both subtle and not so subtle, to get him to hire even one.

After my mother’s last hospital visit, there had been an occupational therapist, and a physical therapist, and a “bathing lady.” The bathing lady gave her sponge baths in the tiny downstairs bathroom, barely big enough for two. Because of her own balance issues, my mother could no longer go upstairs, to the only tub and shower in the house.

These services were all authorized by Medicare because of her fall and hospitalization in October, not because of her Alzheimer’s. No home health support for Alzheimer’s is considered a medical necessity unless the person is recovering from an injury or in palliative care.

Let that sink in.

“You and I can bathe your mother,” my father insisted, “if Medicare won’t pay for it.”

“No,” she said. “We can’t.” She reminded him of the times when Mom had fallen, and the two of them together could not get her back up.

“We can do it if we have to,” my father said. “That’s what families do.”

“But we don’t have to,” she insisted. “We can hire someone like Dorothy. You liked Dorothy.”

The excuses went round and round in circles.

“You never know who you’re going to get.” “They’re unreliable. They don’t come when they say they’re going to come.”  We don’t really need them.” “It’s hard to have someone come into your home. We like our privacy.” “I’m not made of money.”

Change is hard. Especially when it involves giving up control.

My parents had a good retirement. My father would brag about his net worth, and what we were going to get when he died. “Pretty good for a school principal. Your mother made good money too.”

It really should not have been necessary for my sister to be over there four to six hours each day. Every day. Or to give up her part time job because my father, who insisted he could care for my mother himself, could not, in fact, do so alone. She loved them, and she was willing to help, but she had three children, a husband, and a life of her own. If they wanted to stay in the house they’d built – a house that was not made with infirmity in mind – they would need to hire more help.

But still my father balked. And now, here we were.

My dad’s mood was ugly, and he was very easily set off.

“Don’t you know how to soft boil an egg? What the hell is wrong with you? Everybody knows how to do that.”

(Not that he did. Or could.)

“All I wanted was a goddam soft boiled egg. If the yoke is hard, it’s a hard-boiled egg. Even the morons at Denny’s can do a soft boiled egg.”

When she’d suggested he might have a urinary track infection – a simple issue which can mimic a lot of other more serious problems – and asked him to pee into a cup so she could check for a foul color or odor – he threw a tantrum. Made her get a water glass from the kitchen. There was no evidence of a UTI. Whitney was full of shit. The dirty glass went back on the kitchen counter with the breakfast dishes.

“There. I hope you’re satisfied.”

“I’m using the dishwasher tonight.”

“There’s not enough dishes.”

“I’m using the dishwasher.”

My sister told me to call – she wanted to know what I thought.

My father talked to me for a few minutes. His voice was slurred. He was barely engaged in the conversation. But he was polite. He put on a good show. Then he passed the phone on to my mother.

I wished her a Happy Mother’s Day. She chuckled. I’ve come to value my mother’s chuckles. She doesn’t say much these days, but the chuckles let me know she’s OK in there. She’d gotten my pop-up card. Whitney had her open it up again.

The Pop-up cards is a big hit. For a minute it displaces the Land's End Catalog.

The pop-up card is a big hit. For a minute it displaces the Land’s End Catalog.

Thank God for the Finn who invented texting.

Teenagers aren’t the only ones who sometimes need to talk behind their parents’ backs.

I am not crazy…. He sounded better when he talked to you.

You are not crazyYou were right to do the UTI check. Are you staying the night?

She was. My brother and sister in law were coming tomorrow for Mother’s Day. It would be good to have another set of eyes. Maybe he was just tired. Maybe it would sort itself out.

It did not.

26 thoughts on “The Caregiver

  1. bikerchick57 says:

    Paula, I hope you will accept my virtual hugs for what you are going through with both parents. It has to be so difficult for you and your family, especially with your dad being resistant to accepting assistance with your mom and himself.

    Mother’s Day was not kind to my own mother. She ended up in the ER the Wednesday before with a fever, which apparently flipped a switch with her dementia. My brother and I had to struggle through the word salad and confusion and she now has an insistent desire to go “home” to see ma and pa. Mom recently turned 97, but she is adamant that she can’t be that old. Anyone who tells her the true age is met with an angry “you’re lying!”

    It’s not easy to accept these changes in our parents. I sobbed for another stage in the loss of my mother, but know that this will not get any better. I sat with her today and have found peace in her situation. I feel blessed I can still talk to her.

    I’m truly sorry that your dad is struggling. I hope he and your entire family can find some calm in the days ahead.

    Liked by 1 person

    • Virtual hugs are always welcome, Mary. I imagine there’s no point in telling your mom how old she “truly” is. She’s moving through her own timestream now. And you are blessed that you can still talk to her. Find out what she was like at whatever age she believes herself to be – why the heck not? – before those doors close as well.

      I struggled myself with how to present this part of the story. I am working on a longer piece of memoir to be performed later, but I wanted to take it a section at a time, and shape it later. I probably should have made that clearer. Things have changed substantially. My father is much frailer than he was, but struggling less; and he doesn’t really remember any of this.

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  2. Diana says:

    What a beautiful card. And what a poignant cliffhanger.
    My own mother seems to be walking as a shadow character through each of these posts, and I am observing her as you describe your parents’ stories. I love your posts, even as they tear me apart. Your sharing is a gift. Thank you.

    Liked by 1 person

  3. Dorie says:

    Paula
    I am so sorry for the stress that your family is going thru. My Mother died a month ago. She was 95! We are 40 years apart and we’re the best of friends.
    My brother insisted on bringing her to the hospital as her fever was so high and she was sounding confused. She was diagnosed with pneumonia. Something that she had recovered from only a year before. She had enough reserves then.
    But this time after she was discharged she choked on a pill. She aspirated and the choking caused even more inflammation in her lungs. Her kidneys shut down. Her heart slowly failed.
    Like your sister my brother was her primary caregiver. He did everything he could in a day to keep her on track but like your parents she couldn’t remember days of the week.
    She was so embarrassed about this as she could remember us no problem. She knew what bills should be paid and how much she had in her bank accounts.
    I am so grateful that she was with us this long but when your hearing is gone, your eyesight is going, you can’t write because of neuropathy in your fingertips and your balance is compromised, life is just not the same.
    I feel so bad for you and your sister who must have to be very strong right now.
    Thank you for sharing. You have helped me put things into perspective tonite. I appreciate your candid account of how difficult it is to care for our parents as well as our families.
    Not easy at all.
    My prayers are with you.
    Dorie

    Liked by 1 person

    • My condolences on your loss, Dorie. The pneumonia, the aspirating, the organ shutdown. It’s a familiar story. But even when we know the body is failing, we do not want to lose them. Yes, my sister is very strong. And fortunately she has not lost her sense of humor. Yesterday she texted me triumphantly about her first successful soft-boiled egg.

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  4. Terry Tyler says:

    So sorry for all this….

    My mother has been talking rubbish for years now, but she still laughs a lot, which is so good to hear. Makes Dad feel better too.

    I’m all for leaving it to the professionals, to be honest. Mum went to a home as soon as she became incontinent, because Dad knew he couldn’t deal with it. The right time is often before the carer realises, I think.

    Liked by 1 person

    • Yes, I read a book by one of yours – Contented Dementia, I think it was called – that takes that point of view. That there is a time when you know the best thing for all concerned is institutional care, and that you should figure out in advance what you know will be beyond your capacity. Here these days there is a great deal of emphasis on building community supports to help people stay in their homes as long as possible. This includes more of an emphasis on home health care. But so far insurance here hasn’t figured out that paying for those services would encourage people to use them, and cost much less down the line.

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  5. Judi Lynn says:

    It’s hard on a person, being a care giver. It wears them out. I watched my mom take care of my grandma until Grandma died and my mom got Shingles. Then I watched my sister take care of my mom, and her diabetes went off the charts. It’s been hard on your dad, and it’s hard on your sister and the entire family. Be nice to yourselves. The stress and worry take a toll. And I wish all of you the best.

    Liked by 1 person

  6. elainemansfield says:

    I get this, Paula. I hope the misery has lifted or moved or you have a plan that will help everyone deal with the impossible. I’ll spare you the stories of my mother’s growing senility and her second husband’s insistence on doing nothing at all. I thought it would never end, but it did with her living near me in a skilled nursing residence.

    It’s especially hard when you’re far away and have a life where you are (and a new home). It’s especially hard when one sibling is close and carrying more than her share. With my belligerent mother-in-law, there had to be a series of ultimatums that required her to get help. After many blow-ups and insults, I told her three or four years ago that I was handing over Power of Attorney and all responsibility for her to New York State Adult Protection because I couldn’t be responsible for her living without health aids and setting her place on fire. After her residence threatened to make her move and turned off her electric stove(fire hazard), she consented. The power shifted because I forced it. It was like trying to reason with a two-year old. We get along much better now and she’s even grateful for my help.

    Sending you love and patience.

    Liked by 1 person

  7. DeeScribes says:

    “Change is hard. Especially when it involves giving up control.”

    This is so true, and so difficult for those of us who must rely on others. As someone with a progressive neuromuscular disease who must use personal assistants to complete all my daily living tasks (I need a good “Dorothy” or two!), I struggle with my need to control what I can while allowing others to help me with basic needs. As my parents age and require more assistance, I can appreciate their hesitation to have “strangers” come in – even though I’ve had paid staff for almost 10 years.

    Liked by 1 person

    • Dee: I’m sorry that life and work got away from me before I was able to respond to all my comments. I am (blessedly) on vacation now. Your comment is greatly appreciated. My middle sister has MS, and she too has some of these issues. It is hard for her when she wants to be helpful to my parents and her own health problems interfere. On the other hand, she has a particularly acute – and irreplaceable – understanding of what they are going through.

      Like

  8. Mom Sees All says:

    I’m so sad to learn that you also struggle with Alzheimer’s in your family. My husband and I are learning to care for his mother, in the mid stages of the disease. What a heartbreak to see this beautiful, vibrant and independent woman struggle with this horrific illness. I’m so angry with Medicare, affordable care (what a joke) and the real lack of care we’ve discovered while trying to wade through the information available for caregivers. Keeping her safe trumps keeping her happy.

    You and your family are in my thoughts and prayers.

    Liked by 1 person

    • Thank you. Yes, the safe vs happy dilemma. Most of the time it is a false dilemma in the name of efficiency. Perhaps you have read Atul Gawande’s Being Mortal? It does not directly address Alzheimers, but there is a lot of wisdom in that book, particularly around different ways we could better support quality of life and what I’ve come to know as “aging in place.”

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  9. Annecdotist says:

    Another instalment of your family’s Alzheimer’s journey brings mixed feelings: you write about it so well, but so sad to see the path getting harder. I hope your father’s situation improves, but it’s not looking good. Thanks for sharing and what a fabulous card!

    Liked by 1 person

  10. Uncle Jack says:

    Paula; your uncle Jack knows about caregiving! A person doesn’t really know how heavy the burden becomes because he has grown into it little by little.
    I always wondered how I would handle that for my Marilyn, but when the times came at each step along the way,, my loving Heavenly Father was with me – I may not have even realized it then, but NOW I know He was there, because there is no way I could have gotten through all of by myself. I also know the “self flagellation” that we experience while our siblings take on the responsibility in our absence, as was the case with my mom. Never underestimate the powere of prayer and communion with our Lord and Savior Jesus Christ, nor the peace and comfort the Holy Spirit brings.
    Please know that you and the entire Reed family are being held up before the throne of God in my daily prayers. I love you!
    Uncle Jack and Karen
    GGG (giving God glory)

    Like

    • I am so sorry it took me this long to reply, Uncle Jack (and Karen). Work has been very very busy. I am on vacation now, however, on one of the Apostle Islands in Lake Superior. I know you were the best of caretakers for Aunt Marilyn, and I am grateful that you had such a strong relationship with Father, Son and Holy Spirit to strengthen you. I appreciate your empathy with what it is like to be unable to be present and helping, and I am very grateful for your love, and for your daily prayers.

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  11. Norah says:

    My thoughts are with you, Paula as you all struggle along this very difficult journey with your family. It’s a tough load to bear. I’m sorry to hear that it has now become more difficult for and with your dad as well. Tough times. Hugs.

    Like

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