In the Garden

Thank you for your kind comments and emails.  As you probably guessed, Mom is no longer with us.  I have some things I’d like to share about the intense time in late August, during and after her death, but not now.

On the copy of her legal will in the metal box with all her important papers, she had hand-scrawled an addition at the top of the cover page twenty years ago. “At my funeral, please have my friend Barbara sing the old hymn called “In the Garden.””  My good friend Karen and I were able to sing it to her immediately before she died, with her best friend Barbara on speakerphone singing along with us at her bedside when she was just leaving consciousness.  We’ll all sing it again at her service. 

Some of her ashes went into my garden right away, and her gardening hat sits on the fence by the flowers she loved, where the birds she adored love to peck around for seeds as fall descends.  I like having that tangible physical space so close by to honor her with, to leave treats and flowers, to talk to her when her memory calls me.  A cemetery would be much too far away, even if it were in our town.  Now I understand in my heart why so many cultures create shrines at their homes for their ancestors.

Life is moving along.  We’re planning her memorial service out east in early October.  Grief was overwhelming the first few days, and now comes and goes in gentler waves that I can embrace and let move through me.  I’m sifting and winnowing my emotions, her belongings, the memories, the space.  Light and shadows, always shifting.  Not bad, not good.  Bittersweet transition time.  Deep sadness for the physical end to such a sweet, long-in-coming friendship with my dear mother that I only knew for a handful of years of my life, and profound relief that the long suffering from her illness has lifted for both of us.

Living on Air

Bread has been broken, many toasts made, and lots of Mom’s favorite ice cream eaten every dinnertime.

 

Relatives and old friends have called to pray, sing, share their love, and make amends over the speakerphone on my cell that I hold up to Mom’s ear.

Parkinson’s dementia is generally not a disease where receptive intelligence is lost, at least in Mom’s case, even though her thoughts and speech were less and less clear and connected every month.  She feels emotions acutely, and we saw her grimace and a tear well up in her eye when her brother, who’s barely been in touch during her life, told her how much he loves her and how sorry he was that they weren’t able to communicate well.

 

Each time the shift changes at her residence, the caregivers have been saying goodbye to her, not thinking she’ll see another day.  I’ve lost count of the days since she’s had food or water.  I wake up every hour on the camping pad at her side, startled alert by the apnea- up to minute-long gaps in breathing, only to see it resume normally after a few moments.

 

Somehow, she has no expected physical signs of dehydration, yet her bones have begun to protrude, which is not the way I’d like to remember her.

 

What’s beautiful about this?

 

That my mother’s made of more spirit than mattter?

 

My sister and her 13-yr. old son had to return to their home in the South, exhausted from grieving and waiting, and needing to get back to their lives and take care of themselves.

 

Even the hospice staff are stunned at this point that Mom can still hold on.  I know she can hear me because of the way her breathing and facial expressions change when I speak to her.  I tell her how strong she is, that I’m in awe of her.  I also let her know I’m okay and prepared to let her go when she’s ready.

 

I try not to let her know that I’m feeling pummelled by this drawn-out process.  Every night I sing to her before bed, letting her know I’ll be at her side through the night.  Some nights I leave her residence for long stretches of time, in case she prefers to die alone.  I know this is not about me, and I know that neither miracles nor torture can last forever, but the hours are slow, and her too many to count deep purple bedsores are threatening to burst open at any moment. 

 

Every twitch or sound she makes elicits a heart jump, adrenalin rush, and then back to her steady breathing, filling up the room like a metronome.  Its rhythm is so steady, augmented by morphine, that it can be creepy and surreal through the night.  She’s here but not here. 

 

 

 

“Crisis” Care or Peace? Mom may be leaving us this week.

My mom stopped eating last week.  The staff kept trying to feed her, or at least when the hospice nurses weren’t looking.  It’s interesting how philosophy meets reality.  They all know it doesn’t make sense to feed a dying person.  And yes, though Mom has been on hospice for a handful of months and was not at all dying, it seems that the time may be here.

Last night I sat up with her after Hospice was able to remove the fluid that had filled up her lungs.  I suspect someone tried to push food or drink.  I was only told that she “threw up” something that had been ingested and it went into her lungs.  And I didn’t ask.  

I’ve struggled a lot with my anger with the “system” and all the things I’d like to do differently that I can’t control, so I’m getting a little smarter about what I let myself find out about these days.  What can I do now anyway?  Did I want Mom to keep living a 1% life like she was?  

Though I wish they hadn’t tried to feed her when she wasn’t interested, I can see that the staff has developed relationships with her and they want to see her bounce back and smile again – laugh at their jokes.  They have good intentions.  …….And they’re driving me crazy right now.

Last night I sat up with Mom as she slept after hospice had given her morphine to help her regain her breath.  Another drug dried out her lungs successfully.  Though hospice will let her die, they don’t want it to be torturous, and suffocating slowly is not in their plans, so I was thankful to see Mom come to a place of peace again, even though she’s barely responsive.

Staff and nurses and directors who I’d never seen kept coming in to fill their needs to show they cared and were involved.  Every 10-15 mins. there was a knock at the door.  They wanted to stroke her hair, sing to her, get a verbal response from her.  It felt very much about THEM to me, while in great contrast, the amazing Kenyan hospice nurse I sat up talking with all night was only present for Mom’s needs, and had very good boundaries about not disturbing her for anything unnecessary.  She used a low voice (Mom hates noise and yelling) – almost a whisper, and was concerned only about keeping her comfortable and peaceful.

One of the nurses who visited shared that yesterday my mother had yelled “Get the hell out of here!” when she came in to check on things, and was laughing about it.  I couldn’t help notice how loud this lady was, and wished that she hadn’t dismissed it as dementia, because after she was in the room a few moments, I started to feel the same way.  I think she called this stage my mom is in “crisis care.”  Whenever the facility staff were in the room bustling around and asking what they could do next, I felt my heart rate go up and could see Mom fidgeting and ill at ease.  They kept entering in twos or threes, filling up the little room.  It felt oppressive.

The hospice nurse was great at getting them out of the way and preventing them from interfering in unnecessary ways.  Each time they left, the three of us (Mom, me, and the lovely hospice nurse) settled back into a restful calm.

Today my very small family will be coming in to town – my sister and my nephew – that’s all we’ve got left.  Fortunately I have a small, but incredible circle of dear friends in the area, and will call on them if it feels right.

I feel fortunate that I’ve been through many family deaths before, in the sense that I don’t feel compelled to do anything a certain way these hours.  Sometimes I cry, sometimes I want to be with Mom all the time, and sometimes I waste time checking unimportant emails and Facebook and filing my nails and little piddly things around the house that you’d think someone whose mother might die any moment wouldn’t be doing.  Like writing this post right now.

Life is so weird, and I’ve become more comfortable with that, thanks to this experience with Mom.  The strangeness of it all feels okay, and I’m relaxed into the reality that nothing I do will ever feel exactly right or perfect, but I can at least be kind to myself and real and go with the flow, wherever it takes me.

 

Who’s to blame?

Lately I’ve had a hard time figuring out how to react when I discover things that seem wrong to me at Mom’s memory care facility.  Since I’m an ultra-sensitive person to start with, I do realize that what seems wrong to me is probably way over the top for the staff.  That in mind, I do a lot of self-censoring and agonizing about which of my concerns to keep inside, and what to report, or at least comment out loud about, as tactfully as possible.

Finding one’s parent soaked in her own drool to the point where her entire shirt is soaking wet goes in the reporting category for me.  Same with finding her dinner in her lap, two hours after dinner, when she’s been wheeled back to her bedroom and placed in front of the TV for the evening.  These things aren’t common, but they’ve both happened more than once in the last couple months.

Crusty eyes and teeth completely and visibly caked with food are in the grey area for me, since she resists my efforts to do her eyes even on the best days ( a battle I won’t give up), and I know from personal experience that her teeth pack food like crazy and it takes a very long and tedious session to get them un-gunked.

What about leaving her sitting in front of a blank blue TV screen?  Or infomercials?

How about finding her pants are soaked, when I have no idea when it happened?  Forgetting to put her feet back on the footrests so her legs hang unsupported and lose their feeling?

And do I make judgments about the tired young gaggle of nursing students who work nights together at the Memory Care facility — all lovely, caring people when alone, but who tend to gather in a group, eat pizza, and study in the staff room together when they don’t know there are visitors like me present, leaving needy residents unattended?

I’ve been one of the most vocal family members, mainly because I’m one of the few who often intentionally schedules my visits during “off” times, choosing to see the worst of things and not worrying about visiting when I know the administrators are around and my mom has a “visible” standard of care.  Daytime care is universally the best in this world of assisted living.  What happens at night is much more inconsistent, and in some places, sketchy at best.

I remind myself that these tired youngsters are being paid next to nothing, have been asked the same question by certain residents more than 50 times, and are probably the best help that can be found when a corporate business wants the head honchos to be paid handsomely.  Does it make more sense to aim my feedback at them?

Sometimes when I approach or email the director of Mom’s facility, I remind her that I realize they all work hard there, but that I still feel concerned about XYZ.  I see her working over hours; I see her with mandatory weekends for family events, and I think I might feel her frustration with her position and with people like me who can’t let go and just be happy with our parents being well fed and generally not too neglected.  How much more can she work?  Do I expect her to give up her nights too?

If I think about it a lot, which I tend to do on the long drives, and insert some empathy into the picture, I’m not sure there’s anyone to “blame”, at least on the local level, where people will take some responsibility.  The corporate owners live in another state, as has become more common in these kinds of businesses.

The status of what we do with our elders as a culture and the options we have in this country can look pretty grim to me.  And then I start to look at myself again, wondering if I’m doing the right thing to trust Mom’s care to strangers who only have so many resources and staff to be spread around to 35 needy residents.  What am I thinking?

And if I were to bring her back home and give up a large part of my marriage and my quiltwork jobs that feed my passions of gardening and working with children, struggling to find good, reliable respite providers who felt good in my home, would I be in any less agony?  Just a different kind?

None of these questions or angst-filled sentiments are anything new to you caregivers or to this blog, I’m painfully aware.  Nevertheless, this is where I’m at.  Again.  Going around in the emotional caregiver loop, rather than feeling settled and knowing that I’m doing the best I can, which is sometimes my reality, but not very often.

Now sitting back and reflecting a bit after having written this gloomy post, it enters my mind that if my mother were in her right mind and saw all I was doing for her and how much I agonize about trying to make the right choices, I think she’d be pretty OK with what I’m doing, and maybe even horrified at the amount of emotional space she takes up.

She’d always told me she didn’t want to be a burden.  I don’t think of her that way at all, despite the lifestyle switch, but it’s good to remind myself that maybe my expectations for myself and for her care are much higher than what she would consider a fine effort.  Or at least it comforts me for a moment to think so right now.

Once again, I’m with all of you caregivers in spirit who don’t know what’s best, and aren’t sure you ever will….

What to say?

This picture of Mom is a few months old, one of the last times we got out into the community.  I hate the blue cord that hangs around her neck with the call button she can never remember to use anyway.  Seems so silly to me.  I wish I’d taken it off before this picture!

I’ve had a hard time figuring out what I want to say on this blog lately, so I haven’t said much at all.  Little fragments of information and stories have been jumping around in my head, but nothing’s been cohering too much.

Nonetheless, I thought I’d write a few words down, especially because I was touched by a reader who just wrote me, saying her parent has the same diagnosis as my mother, and that she got some solace from reading this blog.  It always surprises me when readers pop up other than my caregiving blogger buddies, since I don’t advertise or tell family and friends about this virtual space.  I wanted a place where I can say anything more or less anonymously, and not worry about what people think!

Summer has been exceptionally brutal for the north; the flowers have mostly all burned up on the patio at Mom’s residence, and they don’t allow the residents out there out of fear that they’ll get overheated.  Being the rebel, I push aside the barriers and take Mom out in the evening.  We both love heat and I refuse to let summer pass us by while we sit inside like captives.

A bird has nested under the drainpipe by the door, which keeps us occupied if the conversation lags, as it often does these days.  Mom can’t grab the words in time, or stay in reality too long.  Her mood swings still sneak up now and then, but overall her emotions seem much milder.  Even though her communication skills are dwindling, and walking is rare, I feel so grateful that I can still get her to laugh most days, and that out of the blue one of her sarcastic and spot-on comments will come out with a bang when I least expect it.  It’s reassuring to know that she’s still “in there”.

I’ve befriended a few older men who come to visit their wives at the Memory Care facility.  I can’t imagine their exhaustion and pain, and it’s so endearing to see their devotion, faithfulness, and tender gestures.  For whatever reason, I see a lot of these male partner caregivers lately- not too many women at all.  They tote in favorite foods in thermoses, bring new clothes, and shower kisses upon their beloveds.  One of them must be 95 or older; he hobbles in often- skinny little thing – so upbeat and energetic.  And his wife, who everyone assumes is mute, squeals with pleasure and talks a mile a minute when he’s at her side.  To see them together makes me cry.  So much joy and pain all entwined; such profound love.  I wish I could share a picture of them together for you.  Maybe some day I’ll ask their permission and risk a lawsuit.  It’s that beautiful!

Trying to Clone my Exhausted Self again: Hiring a social visitor for Mom

I’m exhausted.   Raw.   Completely overwhelmed with no sensible reason that I can pinpoint.

I spent the last week trying to get it together, trying to pretend I wasn’t losing my mind and unraveling emotionally, and barely holding together my days.  I kept trying to find a logical reason why, after all these years (seven!) of doing some form of caregiving for Mom, now that things are more or less stable, that I’d be having a breakdown.

But sometimes there’s no logic.  Something is going on with me and shifting, and I can’t deny it anymore.  My heart feels like it’s breaking open and every visit to Mom, including the long drive there and back home, is emotionally excruciating.  I’ve been feeling like I can’t do this anymore, though to give up is not what I want.

I’ll be traveling a bunch during the next couple months and I think I’ve been feeling guilty and scared to leave Mom without anyone to check up on her care.

I finally got some sleep, and then remembered to seek consolation from my favorite author to turn to when I’m sure everything is going down the drain.

Pema Chodron is a Buddhist nun who writes in a humorous, liberating, down to earth way about what to do when you hit the wall completely and feel there’s nowhere to turn.

No matter how bad things have ever seemed, so far her words can always lift me to a new perspective where I can take a few breaths, reframe, and take the next step.

PEMA CHODRON
Photo Credit: Robin Holland

I own a handful of her books.  Last night the one I opened up was, “The Wisdom of No Escape”.  It was perfect for the situation I’m finding myself in right now.  After reading a couple chapters I knew what I wanted to try again.  I turned to Craigslist. Here’s the ad I posted:

Seeking Social Visitor for Senior with Dementia

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Date: 2012-06-11, 9:47AM CDT
Reply to: mlh5m-307770649476@job.craigslist.org

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Hello,

I’m seeking a kind, patient, interesting, fun person to visit my mother for about an hour per day on the days when I cannot, in the afternoon or early evening. Days are flexible – I can work with your schedule, but I tend to need more help on weekends. Young people, seniors, and people of all ethnicities/races are welcome to apply, but my mother usually prefers females, due to her feelings of vulnerability, although if you’re a younger man with great social skills and experience in this field, she might be convinced otherwise.

You must be very comfortable around people with dementia (my mom’s is mild – she can hold a conversation that usually makes sense). She lives in Memory Care and gets really bored, so I like to get her out in the sunshine for fresh air and to see the flowers, which she loves.

It’d be great if you have some background and personal experience with caring for the elderly, but not necessary. The staff takes care of anything she may need regarding personal care or mobility, and they will help you move her wheelchair outside if it’s too heavy for you. She just needs some verbal stimulation and a fresh, smiling face to give her some attention once in a while! She’s a smart, creative lady underneath her disability, so she prefers being around people who have a lot of interests, can talk about anything, and are open-minded. Her favorite people are often gardeners, artists, musicians, or any creative types who love life and nature.

Her favorite visits often involve heading out to the inner courtyard to see the flowers, chatting, and eating some olives or cheese or fruit, or scones and coffee- her favorite snacks. I’ll reimburse for any foods you bring and share.

The first dates I’m looking for visits to her are the weekend of June 22, June 25th, and the weekend of June 30th.

Payment is flexible depending on your experience and requirements. Please let me know the hourly wage you would suggest when you email.

**You must have a crystal clean background check and 2-3 wonderful character references**

________________________________________________________________________________

So that’s my small step for today.  Hopefully I’ll find a lovely person like I did last time, and Mom won’t “fire” her again.  I know many people wouldn’t mess around with Craigslist and would go straight to a professional agency, but I’m paying this out of my own pocket since it’s to support me, and I can’t afford their fees.  I also like paying people what they’re worth, and this way the visitor gets to keep every penny.

This avenue is not without its headaches, but the fact that Mom’s inside a protected residence makes it a little easier to feel reassured about doing the hiring on my own.  We shall see how this works out…..

The Sweet Burden of Caregiving ~ inspired by Lesley @ “Under My Wing” blog

I just read Lesley Austin’s thoughtful, beautiful post about respite at her blog, Under My Wing, and was so inspired by her phrase “sweet burden”, describing caregiving.

You know when there’s a torrent of words and feelings you can’t capture to communicate to others and it feels exhausting to try?  I’m not very verbally eloquent, especially on the spot ~ a recurrent feeling throughout my life.  That’s why I write.  

And that’s how I felt the other day when I ran into an old friend at the grocery store and we were doing the oh-so- awkward trying to catch up in 6 minutes routine in front of the banana display.  As soon as I mentioned that my mom was in the state she is, I could see him pulling back with pity.  Not unkindly, but guarding himself and putting up a psychic boundary against the further details he was already visualizing – probably because we’re not close anymore, and he knew he couldn’t help.  All entirely sensible under the circumstances of what he was probably imagining.

I wanted to stop him right then and rewind, wanted to yell “wait, stop, you have the wrong story – it’s not the one you’re thinking!”   But I got frozen like I usually do when I feel people putting my experience with Mom in a compartment of their head, slowing the conversation to a creep, not realizing how many variations there are besides the plight of the woeful caregiver.  I had a mouthful of words that wouldn’t fall out of my mouth in any pattern that would be intelligible, so I didn’t even try to explain.  

Very unlikely I’ll ever see him again; not worth it, maybe, were some of the thoughts running through my head. 

But my old friend is a good person, a thoughtful man, a writer/thinking/poet, and though I hadn’t seen him for 10 years and may not ever again, he was a “heart” friend, and I felt we were both cheated in that glossed over exchange that didn’t do anyone justice (him or me or Mom), and I felt just a little emptier than I had before. 

How to communicate the riches of dementia caregiving?  ….the crazy huge world between life and death where you fall into the rabbit hole to a dimension that you didn’t even know existed.  Where a minute of time moves eons slower than the hour hand… and your worst nightmeres turn into poems and acceptance and just enough space to take another breath…  

None of us ask for this experience, but for me, it’s endlessly rich in a way that only perhaps music without words or silence or a heavenly piece of art can get anywhere close to expressing.  

Sadness, while always hanging around the corner, is only one aspect of this wild life that never turns out to be what you expected.  For me, that’s true almost every day I see Mom.

But thanks to you, Lesley, if I ever see Isaac or any other stranger from my past again and start to feel frozen in those pity headlights, I’ll be empowered by your words.  I’ll say that my life with Mom in the crazy right now is a sweet burden.  And I think anyone with the least bit of emotional intelligence will GET it.

 

 

A Different Kind of Visit

Mom had been declining her meds a few days in a row, so was pretty comatose the last couple times I visited.  She wasn’t opening her eyes at all and hadn’t been talking with me.

During my most recent visit, I was sitting with her in this state, reading a sweet card to her that she’d just received from an old friend, not knowing if she was listening or what was going on inside her head.

When I finished, there was a void of silence.  Then all of a sudden she cleared her throat and said perfectly clearly, “Let’s get down to business here.  Are you aware that J. Lo is pregnant?”

“Mom!” I yelled, laughing hysterically with tears in my eyes.  “Are you faking this coma stuff?  And how are you keeping up with celebrities?”  (My mother’s not the tabloid type at all and used to really dislike that kind of stuff.  I had no idea she even knew who Jennifer Lopez was.  I assume the young caregivers might be keeping her up to date.)

Mom started laughing too, and then while she was alert, we had a little discussion about how she feels on the days she’s not so responsive.

“What’s it like in there?” I asked.

“It’s pretty much okay,” she answered.

I asked a few more questions to assure myself, and she basically said she feels peaceful and that it’s too much effort to open her eyes and talk sometimes.

That was a relief.

I thanked her for waiting until she had something really important to say to break out of her false coma, in a teasingly mocking voice.  She laughed and asked me to get the heck out of her room leave her in peace, still laughing, so I did.

I drove home with a smile on my face.  I never know what will happen with my unpredictable mother, but it’s definitely a good visit when we find something to laugh about and she’s not upset about me leaving.

Letter to Hospice: How not to overextend a waning life?

Lately the caregiving has been in a good groove.  My routine has become to spend a lot of time with Mom on the weekends.  During the week I’ve stopped making the long drive to visit.  I completely let go from Monday-Thursday and hope for the best.  I don’t even call because she can’t remember to hold the phone up to her ear, and she just gets agitated.

Things on the surface are more calm and steady than they ever have been so far, but like many caregivers, I still have nagging concerns about my role, the ethical decisions and boundaries, where to set my expectations, and where I might need to let go more.

Below is a copy of the email I just sent to Mom’s hospice social worker, which I decided to share here because sometimes I avoid posting on this blog because it’s too exhausting to try to put all the things that have been running through my head and my heart into words.  So I can either abandon the blog, write sporadically on the months I can summon eloquence, or just post whatever I can muster.  Today I opted for the latter.

Dear (hospice social worker name here),

Regarding your question about what I was wanting help with, I have some ethical questions about Mom’s Parkinson’s meds.  It seems that to some extent they’re extending her life.  She asked me many times in the past not to do that, and I also have my own concerns about her going on and on in her limited life state for more years than would occur without medical intervention.  

 

In the last couple years, Mom’s asked me repeatedly to stop all her meds to help her “move on”.  I felt that was too risky under the circumstances.  She was often agitated and her behavior and moods could be unpredictable.  I didn’t want her to end up back in the psychiatric hospital having to take even more drugs.

 

But now that she’s much more at peace both on the days she takes the meds and the days she doesn’t, I really don’t know what’s best for her in the long term.  I do realize that she drools a lot more, sleeps a ton, and rarely opens her eyes when she declines the meds, but I haven’t noticed any discomfort, other than mine, since it can be hard to witness.  I used to think she was near death on those non-responsive days, but now I’ve come to realize that it’s probably the temporary lack of dopamine.  Whether or not that means anything about a shorter life if it were to continue, I don’t know.  

 

I don’t feel like we need to change anything with her med routine at the moment.  I’m content to let her decide whether she takes her pills or not and not worry about it either way, as long as she seems reasonably peaceful.  But I do feel like it would be helpful to gather more information about these issues for the future.  I’d be interested in hearing what your doctor has to say and the experience of your staff in these kinds of situations with advanced Parkinson’s/Lewy Body Dementia.  

Thanks much.

Megan

Posted in dementia | Tagged allowing life to end, dopamine and life extension | 8 Comments