Tuesday, April 3, 2018

On Being the "Gatekeeper"

One of the more challenging roles I've uncovered in the four years I have been giving care to my mother with Alzheimer's/Mixed Dementia is being the "gatekeeper".

Some people just assume it's fine to just come by when they wish.  Others call begging for time.  In our current phase, mom's rest and healing of her shoulder is more important than visitors that sometimes make her uncomfortable.  The last thing she needs is more confusion, frustration or any sort of circumstance that may make her more "lost".

I realize people miss my mom.  I realize people are concerned she may "forget" them.  But I also realize that her health comes first.  And, if anyone thinks it's easy for me to say "NO, not today or I'm not sure when just now", then they don't truly know or trust me.  Heck, I'm even guilty of having a pal of my own over on a day that maybe was filled with discombobulation.  But I'm still in training.

So, when I have to say "no" to you, please don't take it personally.  Please understand that this period in our lives is all about my mom's well-being.  I don't want to call it my "job" to caregive my mom - because it is an honor; but I do appreciate anyone who respects my judgement on why I have to say "no" sometimes.

It's called boundaries and it's finally time for my family to set them.

Big love.

Wednesday, March 14, 2018

Adventures in Caregiving 101

It will be four years on March 17th, that I've been living with my mama, helping her through the twists and turns of Mixed Dementia.  This is not to be looked at as a formal complaint, but rather as some of the more hilarious sides of this whole situation.

 1) Holidays - I totally forget about them.  I have no clue when they are, and often not a clue what day it is in general.  For this, I ask for your support - a week or so heads up in advance re: holidays would be delightful.
2) Toilet Paper - I need to just buy it (and stock in it) every time I go to the store, because this is an area that can totally freak my mom out.  Well, it's likely it freaks everyone out, when they are well, out of it.
3) Medication refills - Ah, my favorite thing to do, stand in line surrounded by very ill people.  And then the Pharmacy closes for lunch before I'm able to get the meds, due to sick people in line before me. Back in the olden days, when I first arrived, all her meds came due at the same time.  Those were the days, my friend.
4) Doctor's appointments - I honestly feel as though we need someone like a tour manager to help book these.  I once booked FIVE appointments in one week.  This, gentle readers, was not a good plan and I don't even think Cher had enough wardrobe changes to manage all that, but keeping fed, medicated at the right hour and any other possible issue that could present itself at the time, did.  I have learned my lesson on this one.
5) Maintaining sense of humor at all times - while I'm a rather easily amused person, there are some days when not a darn thing is funny.  "Too soon" comes to mind.  The next day, however we can laugh about it until we are drunk on pure silliness over my loss of sense of humor.
6) It's always Friday - when a health crisis arises, I know for certain what day it is, it's Friday.  When the Doctor's offices close at noon and I've figured out I need to call them at 12:06 P.M.  Some of the Doctors have given me their personal cell numbers.  I believe each of them are rethinking that now.
7) Trying out a new medication - This is a space of befuddlement that adds to all sorts of funny new things that involve private issues, I'm sure my mother would not be happy I shared.
8) Getting admitted into the hospital after two seizures and one fall and broken humerus later - Turns out medicare doesn't want people to get well anymore.  After a fall/seizure it's not so cool to just pick your mama up off the floor and ask her to walk it off.  This is where I prefer actual medical professionals to step in.  Call me silly.
9) Paperwork - don't leave home without it.  (apologies to American Express) Seriously the moment you don't have the list of meds (which, thankfully, I now have committed to memory) or the Durable or Medical Power of Attorney, they won't let me do a darn thing, like say keep my mom comforted when she in wondering where the heck she is and what the heck happened.  I now carry a purse the size of a diaper bag so I can just grab and go.
10) Don't forget the cane or the glasses - whether following an ambulance or with your mother as the passenger - the cane and the glasses are vital to quality of life.  While my mom loves to be read aloud to, she still prefers to read her own stuff at her own pace.  And well, walking is just generally safer with the cane.

That's all for now......



Saturday, October 28, 2017

Memories of Pearls

A long, long time ago, I met a dog.  Her name was Pearl.  She was something to behold. 

Shortly before I knew more about her, I had a half dream, half truth and half awake thought about what I could do to help some animals the heck out of the nightmares of the storms we were living in Florida that year. 

The thought involved a plane that would hold many animals and get them to safety.  I even thought I might have been insane. 

Well, turns out I was,  I found a plane, a shit ton of money and safe places for the animals to be.   Needless to say, I didn't get much sleep that week.  Nor did any of the staff that worked with me at that shelter. 

Today, I got a call that probably changed my life in so many ways I can't begin to explain.  One of the owners of one of the animals called - she'd tracked me down on Facebook and she wanted to let me know that Ms. Pearl was on her way to heaven soon. 

I went through half a box of Kleenex while wrestling with the joy I knew was still part of the equation.  . 

Someways, it's easier to just be.  Others's it's easier to be a  pushy broad.  And most just fill you up like this day and you pray you have enough Kleenex to cry yourself out of it.


I could not be more grateful.  I'm not sure there is enough Love for a day like this.  But I do know this - if you don't follow your dreams, you will not help the world be a better place. 

Follow on, fellow seekers. 

Thursday, February 23, 2017

Therapy Hangovers

Ever had one?  Well, think of drinking about 40 shots of 40 different liquors, toss in some lime, lemon and a good, yet difficult conversation and see how you feel the next day, doing everything you must normally do.

I have therapy hangovers now.  I chose to go back into therapy as a live in, full time caregiver for my mom with definitively mixed dementia including Alzheimer's; the moderate stage. I woke up one morning and discovered I was getting lost in the situation, and needed a vacation, if only for an hour a week.

I contacted my mom's Doctor, to ask for a recommendation and first he wanted me to see someone in another town over an hour away, which presented obvious difficulties in the first place, not to mention I know that when I dig deep, driving more than 7 minutes is not the best plan because I'm like a hurricane after some of these discussions - calm, then full on, then calm, then drowning.  So, I waited it out a bit, and then he realized that his partner might be a better plan for me for above stated reasons and perhaps a million more including, I know myself much better now.  He was blessedly correct about his second recommendation.

I've done therapy for years, usually because someone else said JENNIFER YOU need to be in therapy.  I finally acquiesced after several failed attempts by interviewing these people to see if they and I might be a fit for each other.  The Doctor I found at that point literally helped me save my own life.

So, 17 years later, I find myself back in, at my own behest and I could not be more happy about it. Excepting the days like today where I have to have Kleenex closer to me than I do water to re-hydrate from the roughness I've still not managed to uncover.  I often feel like an onion on these days being carefully peeled layer by layer by a Le Cordon Bleu Chef.  Tender, raw and filled with the offer of tears always at the surface.  I have to overtly remind myself over and over to be gentle with myself. Sometimes I write it on my mirror the night after a session to wake to the reminder.  It doesn't always help, just for the record.  Ironically, last visit, he promoted me to twice a month instead of once a week, saying "he noted more grace in me".  What?  I thought as I walked in yesterday.

It usually takes me about half a day to get it figured out - what is wrong with me?  I go through the list - do I have PMS?  Is mom ill?  Did I sleep?  Have I eaten?  Then AHA, yes, even with the note on the mirror - THERAPY HANGOVER.

Yesterday's appointment was more emotional than usual so I went through that list with my therapist. Thankfully, he laughed along with me - we checked to be certain all my limbs were functioning and that no, indeed, I was not losing my mind, but this was the very context of going deep.

Oh.

I owe him a box of tissues, from yesterday alone.

The purpose of writing this is to remind myself and who knows who else - there is no shame is seeking help when things turn tough.  His job is to remind me they ARE tough and I'm not making that up and to walk through it with as much grace as possible.  That, that is all we all can do no matter the challenge.

He must have been a merman in his last life.

In gratitude.



 

Wednesday, November 9, 2016

And So It Is

I find myself in tears this morning for more reasons than I can explain over the Presidential election.

One of which, is the fact that I didn't go to bed until approximately 5 this morning.  I felt like a bird that had flown into a window at 90 miles an hour; I am so stunned.  I cannot help but think half this country wanting change that frightens me, my family and anyone who might think outside of the box.

When I did go to bed, I went to rest next to my mom, in her bed. which is approximately the size of a large yacht.  And there were even monsters under her bed in my dreams.  I woke praying it was all a nightmare; until my body reacted by a full on sob festival.   I didn't want to miss Hillary's speech, so I got up at 8 ready for her to shine.  Which she did.  I can't imagine the security nightmare today presents, so I'm not distressed it took her a bit to get on stage.

I told a friend yesterday that I felt like "it will be what it will be" and we should simply be grateful that we get to participate.  Not so sure I'm feeling that lie today.

I don't like the concept of living in negativity.

HOWEVER, I'm not without hope.  It's a great day to be kind to everyone, especially ourselves.  To remember we choose to live in a country that allows us to fight for what we believe in. We have an opportunity to comprehend differences, grace and tolerance like never before.  Perhaps we will also learn about our very own space of grief in ways like never before.  I also believe we may find more faith than we ever knew existed, as we move together as one.  Respect is a lesson in this as well.

And so it is.

Big love from this mermaid

You must welcome change as the rule but not as your ruler. Denis Waitley




Friday, October 28, 2016

And the beat goes on.....

I spend a bit more time these days than most on, concepts like oh.....shed doors and sealing of decks.  Thankfully, I have my uncle to help me through all that as for me being a never home-owner it gets a tinge befuddling. 

With my mom in ill health metaphysically(that's how I have finally decided to describe Alzheimer's), I feel a great comfort in the fact that my uncle does things like order shed doors from afar.  Not that I know what to do with them, other than find someone able. 

Meanwhile, my neighbor is having a new roof put on and several other home repairs that begin at well, let's just call it too early for my life schedule.  It borders on rude in my sleeplessness state of life in general, but that could be my issue as opposed to actual life.  I don't recall anymore.

I wake laughing mostly, thinking REALLY?  So we have 5 appointments for my mom this week, and you have an air compressor practically sitting in my left eardrum?  (at least I know what an air compressor is, so due credit, if you please)  I honestly thought they were on my garage for a moment.  Unpleasant is the word I use in public to describe it.

Let's get back to actuality here.  FIVE appointments in one week.  I told my mom she needed to find a new concert tour manager, because clearly, I have over booked us.  Several of the doctors laughed.  One, without a sense of humor...well, there may have been a smile.  I'll take it. Doing stand up comedy in a doctors office is not always amusing, even when things are all good.  Note to self. 

I pray and hope all you caregivers out there are finding rest, have no construction next to your eardrums and the love of a great family, like mine.  More soon.

Love,

This Mermaid






Saturday, April 16, 2016

Some Days......

I attempt to write about what it's like taking care of my mother with  serious memory loss.  A couple of diseases, some stroke activity in the past and several other things contribute to these circumstances.  Grief, notwithstanding.  Add in a couple of surgeries on a collarbone and welcome to my mom's world.

I've tried to write out my day in, day out situation - but it never comes out right.  It sounds like whining 99 percent of the time and that is the last thing I'd like to be projected upon this circumstance.

So here's some scoop:

 - It's hard enough watching anyone's memory diminish, but then having to be the kind, patient human that tends to reminding makes it a bit more challenging as the daughter.
 - It's not a half day, sit on the couch and eat bon bon's the other half of the day kind of a gig here - it's 24/7.  I don't rest well often, unless, seriously gratefully, my aunt is here for the night, as I'm always concerned about a fall or some other kind of health issue
- I'm almost always half awake.  I have always been a night owl and now I that I comprehend I was saving up and that now it's related to the fact that it's the only time I have to sit and write and think and watch what I want and not answer questions for others - I can turn into me again.  Then I hear mom pop up in the morning, and up we go and onward.....no calling in sick, no naps without interruptions - it is what it is.
 - I manage to shower about two to three times a week, as it's not comfortable to leave the room and wonder what might be happening 13 stairs down with my feet all slippery
 - There is nothing more profound than having your mother thank you for your presence.  Period.
 - There are days that I think I might lose my mind.  These are the days I forget to ask for help. From people, from the animals and even God. On the best days I actually come to my senses and remember that all is possible with love and answers aren't mine until they are given.
 - Without a support network - including family, friends, music, animals, books, therapists there is no possible way to do this type of deep care.
 - When someone tells me "well, I can do dinner on Tuesday at 7" and I cannot it's frustrating to not only you maybe, but even more to me.
- I'm so grateful I've studied some of God's work in giving it up to the Divine.  I'm so grateful our housekeeper (a) for her and (b) that she changes our family bible to a different page each time she comes to clean.  While she may not speak English, nor I Spanish, we find a place of communication that awes me each week.
 - I'm NOT as exhausted as I think I am.  I'm not as exhausted as I think I am.  Did I mention?  I'm not as exhausted as I think I am.
 - Or maybe I am.  Did I mention I'm caffeine free (mostly) for the reasons of lack of sleep I mentioned above?
 - I do NOT feel trapped, that is so amazing to me even as an introvert.  I love being a homebody.  We have a delightful woman that comes in a couple of times a week to take care of mom while I run about town, and my aunt is nearly always available.
- Planning sucks.  I currently have 5 doctors appointments I'm trying to schedule in for mom - might actually be more than that soon.....and no matter who is here or what is happening, that is priority one.  And it's paperwork and and and and
- Please never use the phrase
"'be sure to take time for yourself" unless you plan on being here to hang with my mom while I'm buying bon bon's.  Seriously.  That is not an option.  Or you could just send bon-bon's.  (just a thought, though I don't like chocolate as much as my mom)
 - there are MOM DOWN days.  This means nothing else is priority.  Other than feeding and watering the animals.  Gotta stop the earth for a bit, answer multiple questions
 over and over again, gotta be sure SHE KNOWS she's certain she has a will and so on.....
 - Grieving is a state of mind I've learned a) to exist within (whether it be pre or current related) and b) not have a true chance to do



It's incredibly challenging to be a caregiver in the first place.  Many of you are right here with me in my heart and it may be that I'm writing an outline for a book about this kind of thing.....thanks for the read.  And for those fellow caregiving peeps out there - wow - Amen - big love and gratitude.

Love,

This Mermaid


P.S.  I love you more than ever, Mom o' mine.