Not quite the plan

on finding my groove as a 30 something single girl and caregiver for mom with dementia

Tag Archives: caregiving


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Thinking of Dad.

With father’s day this past weekend, I was of course thinking of my father.  I thought about digging out a photo of us together to post on facebook or doing one of the other small tributes that people do.  But none of them felt quite right for my third father’s day without him.

Then, I came across an article on what a caregiver learned from his father.  It inspired me write my own reflection on what I learned from my father that makes me the caregiver I am today.  My father was a caregiver for my sister for many years, and had begun to care for Mom, so I had his example to live up to when the caregiving responsibilities passed to me.  So here goes:

1. Keep it fun.  One of my dad’s best characteristics was his sense of fun and humor.  He always had a joke or way to lighten the situation and connect with all the people around him.  In taking care of Mom these days, using humor is one of the best ways I have found to reach her.  Even as conversation fails, she responds to silliness, joking tones and funny internet videos.  Sometimes even my most pathetic attempts at these elicit Mom’s biggest smiles.  She still loves to laugh.  I am grateful for Dad’s lifetime lessons in using humor.

2. Get things done.  Dad was always working and in motion.  He never lazed around or talked about his need for rest, the way I often do!  When dinner was over, he was up doing dishes.  When something needed to be fixed, he was heading for his toolbox.  Sometimes this feels challenging to me, but thinking of him inspires me to make the effort on some of my more tired days.

3. Stay committed.  I often remember a conversation with Dad about my sister when she was doing poorly.  He told me– taking care of her is my job.  I start at this time and end at this time every day.  That is what I do.  There was something so strong in this.  When I have days that I really feel that I have no more energy for my family, I think of these words.  It’s my job.  One that I committed to, and recommit to day after day.

Obviously if Dad was still here, these past few years would not have been nearly as challenging.  He and I could have supported one another through this time.  Sometimes of course I wish things had played out that way.

And yet, he gave me so many strengths and values to draw on that have guided the caregiver I have tried to be.  And it feels like a appropriate father’s day tribute to think of this.

 

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Applause.

The other day I walked in the door after work and Mom was sitting at a table near the door.  She looked up at me, beamed and began to clap her hands.

It was delightful.  How often do you get a round of applause just for walking in the door?  Somehow it felt just about right after an exasperating day at work.

But it made me think about how many of us could do with a little applause. We work in quiet ways in our homes or offices without a moment of public appreciation.  I began to picture the applause that all of us caregivers in particular deserve. 

Picture it with me.  You survive one more day of caregiving.  In your moment of finishing the day exhaustion, you watch a symphony hall worth of people leap to their feet to give you the standing ovation you deserve, just for today. 

Applause. 

Encore! 


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Some days I think dementia is contagious.

Like today.  Where I actually mix up words as I say them. I obviously know all the right words but I hear them coming out of my mouth in a slightly wrong order.  And it takes me three trips back upstairs to gather everything together to be ready to go to the doctor’s office.  Some days I forget things that should be easy to remember, like what book I finished just a few days before.  And it scares me.

Do not be confused.   I am not actually scared that I have dementia right now.  Odds are good that I get it one day, but my plan is to worry about that then.  But what scares me is how far my life is stretching me.  My brain can only juggle so many loose ends and unresolved questions.  I need to pick up the meds, call the assisted care place, find the missing toilet paper, pay the bills, talk to the caregiver about hours, and take the random items out of the freezer that Mom has stashed there.  And when did she last have a glass of water? 

And too, I find myself feeling that I need to remember everything I have shared with Mom since if I forget, then those memories are gone forever.  So I want to hold on to the memories of a happy family.  Of my competent mother.  

Which leaves my mind full of these memories and worries and the endless things to do.  My brain is simply too full and stretched by the crazy life of mine.  And so I find myself grasping for the right word.  Just like someone with dementia.  Just like Mom. 


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Dating and caregiving.

So another relationship ended a couple of months ago and I am back to the wilds of dating life.  This week I have my first first date in a couple of years and am of course contemplating how to juggle dating and caregiving for Mom.

I find myself staring at the question on the online dating site I frequent:  “Would you date someone who still lives with his/her parents?”  Answer– from every guy who appears like an interesting date for me: “No.”

And then there is the message from someone who thinks he is being creative by asking me what the movie about my life would be titled.  I ponder whether I share one of my possible titles for my memoir about this whole caregiving journey.  Not quite the plan?

At what point does one mention, by the way, I live with my mother with rapidly advancing dementia?  Is this a topic for the first or second date, or the twentieth?  Or even via email before the date if I share my honest answer to this man’s question?  How will any of them react?  The questions overwhelm me.  I know and value the incredible life lessons caregiving has taught me but fear my choices make me a far too complicated woman in a pool of less complicated and of course younger women.

Even Google provides me with no answers.   An internet search for dating and caregiving finds me various musings on dating for caregivers caring for spouses who explore dating on the side as their spouses’ conditions worsen.  Complicated also, but nothing like what I am navigating.  An article on Match.com only depresses me as it explains, ” 40 million people — most of them baby boomers — provide care to an aging parent.”  It does however provide the helpful advice to manage my time wisely.

This does however give me a new idea for my memoir title:  If only I was a baby boomer.


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Not in the revised plan.

Am I on Life Plan C at this point, or D or perhaps P?  I am not sure how many times I have revised my hopes and expectations in caring for Mom.

But the other night was a hard conversation.  Sis and I agreed that it is time to put Mom in a home.  The only good reason to keep her out at this point is to wait longer until facing what will be a huge monthly bill from now until the end of her life.  But given how quickly she has gone downhill, that may not end up mattering.  We can pay for a facility for the foreseeable future.

But, Mom increasingly is overwhelmed by life at home, a household full of things to be moved around and hidden away. I worry about her getting into things she should leave alone. And we simply cannot watch her all the time. She gets up in the night or early morning and wanders the house.

And, it is time to start carving out a bit more of a life for me. I have thrilling fantasies of going to the gym after work, being able to leave for work without worrying if the caregiver is here yet, and perhaps having a friend over for dinner without interruption. Wild, right?

Suddenly it has been two and a half years in which my life has been dominated by caregiving. Where did that time go? I am mystified by all I used to do and how little seems to fit into my life now after the meds are dosed, we spend a little time together and Mom is fed and put to bed.

So it is time for a new plan, where she gets a higher level of care and I reclaim a corner of my own life. Plan Q, here we come!


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Car keys.

So I wrote up my rather absurd efforts to find my moved by Mom keys the other day.  Finally last night, I had to admit defeat and call a locksmith to make me a new key to my car.  The other missing keys are more easily dealt with but my spare car key had gone missing some time before so I was stuck.

Two hours and 220 dollars later, I was functional again.

So this morning, I went in to Mom’s room to find her sitting on her bed with all the sheets and blankets stripped off.  In typical fashion, there were several piles of books, magazines, papers and odds and ends covering the bed. 

I looked more closely.  And saw my spare car key. 

Guess I can skip today’s planned trip to the hardware store to make a spare! 


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Mascara on a good day.

Once upon a time, before caregiving took over my life, I used to make a modest effort with my appearance.  Lets be clear that I was never particularly enthusiastic about makeup but I was aware of personal presentation.  I gave some thought to clothes, jewelry, purses, hair. 

When caregiving came along, it was all too much.  A lot of days early on, I did not even look in a mirror.  I did not wear earrings for so long that it surprised me that the holes had not closed up when I finally found some to wear. 

In the last two years, I can probably count the number of times I have walked into a store that sells women’s clothing and nothing else.  Once, Mom and I passed an H&M on a walk and spontaneously decided to shop together.  Mom picked up a bunch of clothes for me in the wrong size but also picked out a necklace for me that I wear often now.  It was a lovely outing since shopping for my clothes once was a regular bonding activity for us.  On another occasion, I convinced Mom to stop at an outlet mall we were passing on a drive and similarly had a happy hour of shopping for both of us once I figured out how to manage the wrong size and style clothes that she consistently selected for me! 

But wirh these occasional exceptions, steps to take care of my own appearance are a lot lower on my list.  At some point, all my makeup expired.  Pedicures stopped happening. Where once I would have planned an outfit for a friend’s wedding weeks in advance, the last few times I have found myself wildly throwing a couple of dresses in a bag hoping that the shoes I had already packed would coordinate reasonably well.

Caregiving has taught me the limits to how many things I can juggle.  At some point, the list simply overflows. 

As I have improved my juggling skills, I have found that little bit of energy again for these kinds of steps.  Lately the daily goal is mascara and one item of jewelry before I walk out the door.  Sometimes I manage one, sometimes achieve both.  Today was a good day for mascara and I am pleased enough by that. 


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The caree still cares.

So, my sister suffers from a disability and has lived with Mom basically her entire life.  Mom has spent a substantial amount of her life energy as a caregiver to my sister, worrying about her and loving her through some serious ups and downs.

When Mom was hospitalized a few months ago– having completely passed out– when she came to in the middle of the night, she asked the nurse to call home to check on my sister. When I visited and understood her mental state later that day, I was shocked that she had been able to articulate that need to the nurse.

No matter how many other things Mom may be forgetting, she remembers to care for my sister. She asks how she is doing. She looks in on her. Mom reminds me to be gentle to Sis and how much harder life is for her. It amazes me how solid this relationship remains even as Mom forgets all else. To Sis, Mom almost consistently demonstrates compassion and concern. Today she stopped Sis to ask if she was feeling downtrodden, a question I certainly am never asked. The amount she can do may be more limited, but Mom always remembers to try.

These days of course my sister cares for Mom more than vice versa which has been a beautiful reversal. But Mom will never see it that way.

I can only conclude that love is a deep habit. My mother’s instinct to protect and shelter her younger daughter comes from her deepest feelings. It remains strong when so many other memories and thoughts fade away. I have watched as the circle of people Mom remembers tightens from the many she used to entertain and correspond with a few years ago to just remembering those closest few today.

One day the loving concern for Sis will also fade. But not without a valiant fight from Mom to keep caring as she knows only a mother can.


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Patience, ah, patience.

Mom: “What time are we leaving?”

Me: “7pm”

Mom: “What time are we leaving?”

Me: “7pm”

And, five minutes later, “What time are we leaving?”

At some point, it gets a lot more challenging not to have that tone creep into your voice.  That tone that says, I have told you for the fourth time!  Some days, a certain tone is definitely in my voice.  A tone that says, are you kidding me?!  Stop!  I cannot do this.

Patience has never been my strongest trait.  I would describe myself as a rather impatient person, one who reads books quickly to get to the end.  So dementia has been a test, and one that I too often recognize that I am failing.  I strive for patience and yet so often it feels impossible.  And some days I hardly want to try.

On the good days though I reflect that I am building some patience muscles.  Perhaps it will pay off one day!


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The sudden insight.

It was my birthday the other day.  I have low expectations for Mom on such occasions but she managed to surprise me.

Mom was up early which is a depressing new pattern, eliminating the slim window of time that I used to have for myself.  She has woken me up early every day for the past week.  Even my serious morning grumpiness does not seem to stop her!  (Even well into the dementia, Mom encountered a mug one day while we were shopping that said, “I drink coffee for your protection.”  She insisted on purchasing it for me.)

So Mom was in my room around 6am on my birthday and wanted to talk.  She told me it was a special day, much to my surprise that she remembered.  Her remembering it kind of made my birthday.  But then she wanted to talk more seriously, and told me she did not want to be an imposition.  I shrugged it off thinking she was referring to the immediate conversation but a moment later she commented that all of this was happening at the wrong time for me.  She mentioned my sister’s issues as well, which made me convinced that she was trying to communicate something bigger.

It’s impossible to be completely sure of Mom’s meaning in these kinds of conversations but I am fairly confident that she was trying to communicate that she does worry about burdening me at this point in my life.  It was a rare moment of insight for Mom.   I appreciated her being in mom role toward me and wanting to take care of me for a moment.   Though I hope she does not worry about that often, it was rather a birthday present to know that she had any concept of this.

Also, after dinner that evening she disappeared into her room to retrieve her gift for me.  She never returned, so there may possibly be something hidden away.  And if not, there certainly was a full intention.