Walk A Mile: Taking Care

She doesn’t use her dishwasher or her oven anymore.

Correction — she uses these things, but not in the manner in which they were intended to be used.  They have become filing cabinets of sorts.  The top rack of the dishwasher is where she stores paper towels.  Not rolls of paper towels, but individual sheets that have been folded into thirds.  They are arranged in the rack quite neatly.  The bottom rack holds her mail.  We, or her aides, usually are able to grab it before she does, but sometimes she retrieves it, and so into the dishwasher it goes.  The oven?  Old checkbooks, mostly.  (Note:  we had said oven disconnected from the gas months ago.)

We are in the habit of regularly checking inside the oven and the dishwasher to make sure we’re not missing anything important in the way of her paperwork, especially around tax season.

My mother-in-law was diagnosed with Alzheimer’s in 2010, but had been exhibiting symptoms for a good year or so before that.  She lives in a two-family home and my husband and I moved into the downstairs apartment 3 ½ years ago.  We have been her caregivers ever since.

As I write this she is somewhere around Stage 5.  She can dress herself, for the most part, although in recent months she has needed both help and prodding with this.  I think she would prefer most days to stay in her pajamas, but getting her out of her clothes and into said pajamas is a crucial part of the evening routine, so that she knows it’s bedtime and will go to bed instead of roaming her apartment all night.  So I make sure she gets dressed, and leave notes for the aides to convince her to do so as well.

Routine is everything around here.

She has aides with her every weekday while we are at work.  Marion on Mondays.  Nancy and Liuda on Tuesdays and Wednesdays.  Nancy until around 3:00 p.m. on Thursdays, at which time my brother-in-law takes her out for dinner.  Nancy on Fridays.  We take over at 6:00 p.m. each night, making her dinner, getting her into her pajamas and ready for bed.  We make her breakfast in the morning, feed her cat, and make sure she hasn’t broken, or could potentially break, anything.  We stay home on weekends.  One of us stays home while the other runs errands or goes shopping.  We have to turn down most invitations to parties and shows.

She cannot be left alone in the house, not even for a couple of hours.  She has flooded her bathroom (and subsequently, ours as well) at least three times.  She puts cat food in the washing machine.  She overturned a planter full of dirt on the kitchen counter so she could “clean” it.  We have long since stopped underestimating her ability to create a fair amount of chaos in pretty short order.

 She can be docile and childlike a lot of the time, but she can also get obstinate and quite rude with us if she doesn’t get her way.  No, you can’t stay in your pajamas.  No, we’re not going to throw away your antique desk.  No, you can’t eat just cookies for dinner.  She is, at times, a 73-year-old toddler.  A toddler who has a vague recollection of having once been independent.  I cannot imagine what a living nightmare that is for her.

 It was only a few years ago that she’d taken herself to Italy.  She was an avid viewer of Boston Legal.  She read, and re-read, everything by Truman Capote.  Everything was organized and labeled.  She never needed to follow a recipe card for most everything she made.  She followed my blog, made comments, sent jokey emails.  I considered myself lucky to have a mother-in-law like her.

Now, she can no longer read.  Signing “Nonni” to her granddaughters’ birthday cards is a struggle for her.  She made us throw out her television set, because she didn’t know what it was for, and didn’t want it in her house.  Her world is growing smaller and smaller.

“Why don’t you just put her in a nursing home?”

Well-meaning people, people who see that we’re under a lot of stress, ask this as if it is something we haven’t considered.  As if it’s the simplest thing in the world to do.  It isn’t.  I won’t get into the list of things which one has to be in order to be considered “medically eligible” for a nursing home, according to Medicaid.  I won’t get into the endless paper trails we are trudging to get her legal and financial ducks in a row.  I won’t get into how many nursing homes frankly just fucking suck, and how I would really, really not be able to live with myself if we left her in one of them.  I try not to go into the details with these well-meaning people, because in the end, I sense that they really don’t want to hear about it.  Why would they?

Prior to 2010, I was one of those people who breezed by Facebook posts about raising money and awareness for Alzheimer’s.  It didn’t affect me personally, and I was on Facebook to look at stupid cat pictures and pick fights with trolls.  Prior to 2010, I was one of those people who’d joke that I had “the Alzheimer’s” because I couldn’t find my keys.  Prior to 2010, I was pretty goddamned ignorant.

Sometimes, I wish I still was.

Because for all the “rewards” of caring for my mother-in-law (I’m finding strength within myself that I didn’t know I had!  I’m not ever going to take things for granted ever again! Tra la la!), there are days when I would dearly love to not have to deal with any of it.  Not the cat food in the washing machine, not the surreal purgatory that is “adult day care,” not any of it.  I long for selfishness and solipsism sometimes.  I’m sorry.  But it’s true.

We did this, moved in, agreed to take care of her and let her live in her own house until it was no longer possible for her to do so, because it was the right thing to do, and because she asked us to.  It made sense at the time.  We were paying a ridiculous amount of rent to live in Boston, we have no children, and…yeah.  It made sense at the time.

I am aware that as far as caregiving goes, we have it better than many, many others.  My mother-in-law was good with her money, to the point where we can afford to have aides with her.  My brother-in-law and his family take her on some weekends, so we get breaks from it here and there.  I belong to enough online caregivers’ forums to know how bad it could be.  Some people (mostly women) are doing this completely alone.  Some people have zero support from other family members.  A friend of mine is caring for her mother.  One of her brothers agreed to assume caregiving for a few days so that my friend and her wife could go up to Maine for a breather.  Eight hours into their trip?  The brother called and told them to come back, because he couldn’t “deal with her.”  I am no longer surprised at how many people will turn their backs on their parents, grandparents, and other loved ones because they don’t want to “deal with it.”

Listen — I am no saint for doing this.  If you could hear some of the things my husband and I say to one another in the course of a day, you would have very little admiration for me.  I am quite certain that someone else could be doing this better than I am currently doing.  I am patient with my mother-in-law.  I am gently reassuring as she struggles with her clothes.  I smile beatifically as she tries to brush her teeth with a wad of toilet paper.  I pretend not to notice her rolling her eyes at us when we tell her that she has to wash her hands after using the toilet.  I acknowledge her dissatisfaction with her now-hated coffee table, and quickly change the subject.  Over and over again.  Is this an untapped source of empathy and patience, or is it my Bachelors in Theatre?  Hard to say.

 It is terrifying to watch someone slip away from this disease.  Terrifying and heartbreaking and exhausting and depressing.   There are times when I really can’t imagine a point where I am no longer having to do this.  But 3 ½ years in, all I can think sometimes is, “What if I am STILL doing this in three years?  Five years?”  I really try not to imagine having to go through this again with my husband, or consider that he may have to go through this again with me.  But, you know, it could happen.  There doesn’t seem to be any rhyme or reason in terms of who gets Alzheimer’s and who doesn’t.

I took a minute just now and read through what I’ve written.  My life is really not that dire.  Again, we have it so much better than so many other caregivers out there.  However, not acknowledging the frustration, drudgery, and heartbreak of our situation – to not speak of these things, but to instead stuff them down for fear of appearing as though I’m whining – I don’t think that’s helpful for me.

I write this in hopes that there are others like me.  I’m in my forties.  I’m not especially spiritual or religious.  I don’t find images of teddy bears and roses, accompanied by bad poetry, particularly comforting in the midst of all this.  I want to hear that I’m not completely insane for thinking some of the stuff I think.  I want to be able to laugh sometimes.  I want to hear how others are caring for themselves in the fleeting moments during which they are not caring for someone with Alzheimer’s (or Parkinson’s, or cancer, or any other debilitating illness).  I want to not feel so alone.

 

Lisa McColgan
Lisa was born in Jamaica Plain, MA, in 1970, and grew up in the suburbs south of Boston. She received her BA from Saint Leo University, and an MFA in Creative Writing & Literature from Emerson College. After spending many years in various underground theatre companies and bands you've never heard of, she turned back to writing and has been maintaining a blog at lisamccolgan.com. She currently resides north of Boston with her husband and two formerly-feral cats.
  • http://www.theflounce.com/ MartyWebb

    In 2002, my father’s good friend passed away all too early from a motorcycle accident. For the first time in my life, I saw my dad do something selfless.

    Enter Loreda, that friend’s mother who didn’t have any family left after being widowed by her husband 10 years prior and the aforementioned son passing away.

    We’ve been taking care of her for over 10 years now, and while she’s a stubborn old lady, she’s been a blessing to my family. We moved her closer, getting her a new house and car, making sure all of her paperwork was in order so she could live with her cat Garfield and her son’s dog Scarlett.

    In the last three years, things have taken a turn in her health. Like her mother, she was diagnosed with early onset Dimensia and Alzheimer’s. She suffered many minor strokes that we were unaware of(she was living on her own still, and she didn’t remember them,) that expedited that process. She has, compared to this piece, a much better memory. But it’s really a struggle seeing her memory slip away, and her lose what made her HER.

    Early last year we moved her into my dad’s place so that he could keep a closer eye on her, take care of her. It only lasted a few months before it was worse, and we had to use assisted living. Despite her health being better than it’s been in a long time, especially in terms of attention and care she’s being given, I can’t help but feel an overwhelming guilt. I feel as if my father and I passed the buck a little bit, despite my dad speaking to her every day, and visiting her every other day.

    Thanks for posting this, there’s not many people I interact with daily that have any idea what it’s like to go from son/daughter/grandson to care taker. It’s good to see someone, anyone else’s take on the situation.

    • candibars

      Well damn, Webb. This piece already had me blubbering a bit, but you just pushed me over the edge. It sounds like you and your dad have been a wonderful gift to Loreda.

    • Lisa McColgan

      Thank you. Truly.

  • DoofMartin

    This is one of the best things I’ve read by you, Lees.

    • Lisa McColgan

      I love you.

  • Soulsweeper

    Taking care of my grandfather almost sent my grandma to an early grave. He didn’t even have Alzheimer – maybe some dementia now and then, but mostly just foul moods. Having seen that, I doubt I’d be able to become a caregiver for anyone, at least not for long. Perhaps it makes me selfish, but honestly, I don’t give a damn. I know I wouldn’t be up to this and in the long run my own sanity and relationships would suffer. Maybe you’re not a saint for doing what you’re doing, but I firmly believe it’s not something that could be done by everyone.

    • Lisa McColgan

      Thanks. I am pretty saturated with doubt over this; it’s good to hear encouragement from internet strangers.

  • Val0ciraptor

    What a heartbreaking, yet lovely story. I hope that you have more good days than bad and that you know that if she were able to understand what you were doing for her, she would thank you.

    • Lisa McColgan

      Thank you so much.

    • TheeLoveCats

      Can I second this, please? I don’t want to steal your words but that was perfectly stated and pretty much the same thing I wanted to.say.
      This was a beautiful story to read.

  • tinylights

    This piece was very hard to read for me but I also loved how honest it was.

    My father is in early stages of what we believe to be Alzheimer’s. He is forgetting things so regularly now. He couldn’t remember his first wife’s name until I reminded him. Even then, he wasn’t sure because I said her first name, not knowing she went by her middle name. He will ask the same question over and over again.

    And he will tell the same story over and over again, often a story from his childhood. Part of it is nice to hear these stories I hadn’t heard before. Stories about him stealing his dad’s car. Or ending up in a Tijuana jail. Twice.

    But it scares me to think how much longer he has until he starts to forget us.

    Luckily, he does live with my oldest sister. The conversations we have about him are both hilarious and heartbreaking. The milk that she found in the cupboard instead of the fridge. Hilarious. The discussions about what will we do when he gets worse. Definitely not hilarious.

    It’s hard work to take care of someone. And even though you might say or think some awful things, as everyone does, it doesn’t mean you aren’t doing an amazing job. Thank you.

    • Lisa McColgan

      Thank you. There are still moments of humor in this, and it’s important for me to remember that.

  • eNVee

    My grandmother has advanced Parkinson’s. She was having issues with dizziness and low blood pressure so she was confined to her bed a couple of years ago. To make matters worse, she went completely blind, very suddenly, from an autoimmune disease that was misdiagnosed in 2007. She was still having trouble adjusting to that when her Parkinson’s symptoms began. My aunt lives with her, and has caretakers come stay with her during the day so she can work. Doctors and nurses always compliment her on my grandmothers care and tell her she is much better off at home than she would be in a nursing home.
    My aunt stays home on weekends to be with her, and any kind of social event has to be arranged in advance to make sure she can get a sitter. The ladies who stay with her are wonderful and treat her like family. My aunt tries to focus on the positive side of things, and updates her Facebook statuses with quotes from my grandmother or conversations they’ve had, whether it is from a “good” day or just her being silly. My grandmother was a very witty person and that side of her still comes through quite often.
    I really admire my aunt, and other people who put themselves in the position of caring for an elderly relative or friend. These people sacrifice so much of their time and if you ask them, they usually tell you it’s all worth it just because they know that person is being taken care of. Nursing homes just aren’t staffed well enough to take the best care of every patient, no matter how many great employees they may have.

    • Lisa McColgan

      The aides we have (we use a service called Home Instead, and I highly recommend them to anyone in a similar situation) are fantastic, but we are coming up on needing the next “level” of service from them (personal care; she no longer wants to take showers, although she’ll still take a bath with assistance).

      This is what terrifies me about placement. I’m not a nurse, and so I’m simply not equipped to do most of the things that she is going to need pretty soon. But I don’t want her going into a situation where she’s going to be ignored.

      • eNVee

        My aunt got my grandmother on Hosparus…not sure what the guidelines are for that but it might be worth checking into. They send a nurse to check on her at least once a week and nurse aides are sent to help bathe her twice a week. Sometimes there are volunteers that help do those kinds of things as well. There are also programs that can help pay part of the expenses of hiring caregivers to stay when you can’t be there. My aunt is not a nurse and has no medical training, so she watches and asks lots of questions about what to do…it’s hard for her sometimes but somehow she manages.

        I know here, our local nursing homes are very understaffed. My great aunt is in the better one, and we’ve walked into her room to find her unable to eat her dinner because nobody was available to take the lids off for her. She’s labeled as a “fall risk” and since they are not able to watch her that closely, she’s actually fallen in her room a couple times. That’s one reason my aunt has chosen to keep her in her home…even though it’s hard sometimes, she knows she is getting the best care possible under the circumstances.

        It sounds like you and your husband are doing a great job, and I’m sure your mother in law appreciates it, even if she isn’t able to always show it.

  • thewired1

    My mother just admitted that she’s having memory issues, and that it’s bothering her. She wants my husband & I to move in with her, in her 1200 square foot mobile home, before it gets too much worse. “While I still remember what the key is for,” she said. It scares the living daylights out of me.

    • Lisa McColgan

      It’s a frightening disease. So many hugs to you, and to her.

      The upshot of all of this is that I am learning (the hard way) that I am capable of a lot more than I thought I was capable of. For example – I actually gave her a bath tonight. And it was fine.

      If you don’t think you are up to the task, then don’t do it. And don’t feel guilty. People with Alzheimer’s need professional help every step of the way.

      My advice to you, should you decide to make this move, is to join some online and/or face-to-face caregiving groups (alz.org can hook you up). We went into this totally blind and totally not knowing what we were getting ourselves into. I wish I’d talked to more people in my position before I agreed to move here. What’s done is done, and I’m committed to riding this out until we have to place her.

  • nyhcmaven84

    This hit home. My grandmother had Alzheimers and it was damn hard watching one of the few loving and sane relatives I had growing up, suddenly not even know who her own grandchildren were.

    It honestly scares the fuck outta me whenever I see my dad start to display some signs of memory issues, even though he’s only 64.

    Caregiving is tough. It’s okay to express displeasure. You’re doing a lot more for your mother-in-law than many people are willing or able to do, and that’s commendable.

    • Lisa McColgan

      Thank you.

  • Jim Young

    You aren’t alone. We were really pretty lucky, having enough of my mother-in-law’s friends and our family to spell each other and give her some change, as well as eventually getting her into a wonderful assisted living facility. She had excellent help at the assisted living facility she stayed at before entering an incredibly supportive VA Palliative care unit, the care was so good I had to ask where they got people so dedicated, understanding, and comforting to the clients. We found most of them had lost parents and friends in similar situations and were “paying back” with great appreciation for what earlier caregivers had done for their families.

    With their help and guidance, plus comparing notes and observations of more of our college students I found who left careers early to provide care, we developed ways to visit often, sometimes together (from across the country), sometimes individually or in pairs. We found it was better to not have side conservations that distracted her, and to let her basically talk to us one at a time, calling in others as she wanted. We all found out about “sundowners” time, she (and many others) would be upset no matter what we tried to do, so we carefully timed our good byes to leave her more comfortably alone, though we would often enough come by later the same day after dark.

    What worked for us, too, was changing the person she would pick to unloaded on. If she started blaming my sister-in-law for all the things she didn’t like, my wife and I would go in for a while (telling her gently not to be too hard on the other person who was trying to help her). We were rich in having her friends and nurses (like a male nurse who had been a special ops troop) that would step in and gently, or firmly lay down the law she would respect.

    Though she had signed all the do not resuscitate forms, etc, she was not ready to go in July, when they gave her about two weeks to live. She was a tough Coast Guard Radio Operator, who volunteered for the SPARS as soon as they formed them in WWII. She soldiered on, inspiring us with her spirit if not perfect understanding of the situation, sometimes warming our hearts with preparations for coming into port “tomorrow”, and making sure she could march with the troops. With the mix of friends she lasted much longer than expected but we knew the end was near with an infection from a break in a fall, so they finally moved her to the VA Palliative Care unit where they had just had a well loved WWII Pacific POW pass away. She was the only woman there, but she had helped take care of many of our returning POWs at Camp Roberts for a few months after the war (many of whom never really recovered enough to get back into civilian life). That got her the royal treatment there and she finally seemed serene that final Sunday night, and gently passed away in the early hours of Monday morning, incredibly, to us, five months after they had given her two weeks, and on the one date that meant so much to her, December 7th.

    • Lisa McColgan

      What an amazing story. Thank you.

  • http://www.theflounce.com AlexisO

    What a beautifully written article. Blew me away.

    • Lisa McColgan

      Thank you.

  • Jessica B

    ugh lisa, i so relate to this. my mom, in her 60s has ftd, and there are so many personal care issues that she, well, no longer cares about, and i struggle all the time with feelings of guilt, like if she could see herself and knew how long we had let her go unbathed rather than fight about it, would she be disappointed that we have chosen peace over cleanliness? timely for me, this discussion, as i am building a community site for the younger set of caregivers, (launched yesterday!), because there need to be more spaces where you can find other people that understand – and give voice to – how much it fucking sucks. thanks for this piece, which says it so well.

  • Flannan

    I really appreciated this article and your honesty. There’s nothing wrong with saying ‘this sucks’ because it does. It’s a lot of work and patience and we’re all only human. Kudos to you for doing your best and making a commitment that less and less people make in today’s society.

    • Lisa McColgan

      Thank you.

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