The Amazing Shrinking Woman

Mom has lost so much weight. A statuesque and large woman, we proudly share the image of viking/amazon woman. We are not thin folks.  Soft and squishy hugs and lots of gravy make a substantial grandma.  No more. Her unwillingness to eat has impacted her body remarkably.  I took her to the doctor for her physical and now she has lost even more weight. Since we started this adventure three years ago she has now lost 50 pounds. That is a huge physical change.

None of her clothes fit.  As winter quickly closes in the size 20 wool pants and 2x sweaters she insists she will never be able to button because she is too fat, actually fall off.  She has become a size 16/14 with a body image that simply doesn't match.  As I remove the now over-sized wardrobe from her closet she is not triumphant, like someone who had succeeded in a diet would be.  She is bewildered.  She thinks she is gorging on food at meals. She isn't. I check. She simply doesn't eat much anymore. Whatever is on her plate, she leaves half or all. 

 Her cupboard and mini fridge are stuffed full of easy to eat snacks and alternate meals which she asks for and never opens. Only the bananas are eaten, and now she says "don't bother with those, I don't need them anymore."   I still cannot make her eat. I could not when she lived here without lots of cajoling and manipulating.  As she has lost more of her mind, it has become even more difficult to awaken her appetite. She is disappearing. It bothers me and makes me sad.
Her body matches her mind now.  It looks vaguely like her, but different.  It lacks substance and seems somehow wasting.  Each time I see her she is less there and more clueless.

I would fix her.  I cannot. 

Great mystery. You are.  I get it.   What I am doing no longer works.  Show me another way so I can keep going.
Amen.

"home" for a visit

Mom has lost 25 pounds since moving into the assisted living facility.  She doesn't like the food and isn't eating.  She has been depressed and it has been hard for her to get motivated to eat.  I had a couple of days off in a row.  I was supposed to actually rest and recoup some energy before beginning a marathon summer internship.  I didn't.  I brought mom "home' and fed her. I watched my dog get happy, waking the house with her thumping tail wags on the floor. I watched my mom's cat come out and purr, chasing toys that had become dusty. We were alive again.  I still have mixed feelings about the Facility she now calls "the home". They take good care of her when she cooperates.  I felt like my very empty lonely house was "home" again.  And parts of the visit were a great success! Mom ate! And some of it wasn't.  I got too tired quickly. We simply could not do it alone. 

Nothing is perfect and maybe this will be all right.  She is back now, willingly and happy, (and currently well fed) in "the home". Not my home.  We decided "It was a vacation only".  It was good, but we all agree, I cannot keep it up.   We have plans for a return vacation when my internship ends, and then we will also have pie.

Sacred keeper of my heart's joy;
Thank you for this brief island of happiness and reunion.  Memories may flee, but love and wagging tails remain to bring us peace and smiles.

Amen

grief

My real dad died a few weeks ago.
It wasn't totally unexpected but it was sudden.


The words stop.
First numb.

then...confused.

then frenetic.

then overwhelmed,

 and now...

I find myself sad.
Unbelievably sad.
Now, out of no where,  I cry for him and all the loved ones who have died.  So many all together.
The tears that suddenly flood my eyes are just... mine. I could say..ah! there is daddy! Or there is my step dad (was it just six months ago?) there is grandma, there is my dear kitty(gone before Christmas), there is my mother's former self.

I miss them all. I am going along just fine. Life is working, I am working. I am being present.  I am enjoying my grandchild, and then...I cannot focus.

Grief is sneaky that way. It can hide underneath, like a bittersweet aftertaste in wine. No matter how much I know about this intellectually, no matter how many people I have accompanied as their loved ones have passed away, or how often I listen to the sorrows of others, I didn't know.

Now I finally get it.
This is unbelievably hard.

Insidious.
And I was funny before. (maybe not here, but in the real world, according to one of my students,  I am "hilarious")
It is harder to be up for others.  I need something else now.

I need to be here for me.

Now I am embracing sad.

Thanks dad.  You have taught me more compassion.

Polly anna's persistance price- a lament

I am on an emotional mega-coaster.This isn't anything I can control and knowing that isn't real helpful right now. Too much is sometimes just that. Too much.   My cat died the day after Thanksgiving  and I became a grandmother for the first time less than a week later.  Thanksgiving was wonderful, then my father in Law had a stroke when he got home.  He is experiencing an amazing recovery which is fabulous, but feels too weak to drive, (I applaud that choice) so cannot come up to meet the baby. My adult children are living their independent launched lives, as planned and prayed for,  and I miss them with every fiber of my being. I miss my mother on so many levels.  Mom is happier in "the home" but she is not eating and becoming more and more "absent". I cannot get to see her often enough. The work projects I spent so much energy on at the hospital are going without a hitch and yet I am crying myself to sleep. I  have been so unbearably sad for the last month, it is remarkable that I got up this morning.  My life is incredibly full of amazing things.  I have been working , constantly working actually, in an effort to hold back this dark familiar LONELY pit.  I know intellectually that overwork, be it as a caregiver or as a chaplain or even as a the funny wife of my nerdy husband, has a price all its own. While being in the moment with patients in need, or students  in turmoil,  friends in crisis, removes me, if just for the moment, from my own heavy grief burden, it doesn't do anything to cure it.  When I stop, I   S T O P. Life pours in full force and I freeze.

OK Grimelda.  I am finally listening.

I am going to the Caregivers support group now.  I am going to hang onto every positive, every hopeful thing I can muster.  I am going to find laughter hiding in the muck and I am going to go ahead and weep for Kitty, for my mother's self, for my pining dog and for the neglected life I leave in the wake of my business.  And I am going to sing. I am going to sing of the miracles of a healthy granddaughter, a loving husband, amazing adult children, and the persistence of parents.


Amen Amen and Amen

Scrap over Scrabble

I played a game of Scrabble with mom.  It has been a long time since we have played one on one.  When she was in my house she always had some task I needed to do for her and we had not "played" for over a year. Scrabble has always been a favorite for us.  Mom raised us on educational toys.  No collecting of action figures for us.  Maps, geography games. chemistry sets and hundreds of variations of word games comprised our rainy day pastimes.  When I was in High School, the English teachers from my school gathered in our dining room daily for intense Scrabble games.   We were "hard core"!
Just last week mom had bragged to me how she had 'won" scrabble as if it was the proof she was not demented like all those "old people". 

I noticed by fourth turn that she was not "getting it." I played less competitive and more cooperative to make it fun.  When she tried to play two words in one turn because she wanted to have it be that way, I had to notice. I helped her remember the rules.  When she insisted that "hooky" was Hokey, I let her have it.
When we finished she had lost to me for the first time.  I could not pretend to myself that she was not deteriorating mentally.  Luckily mom just thinks I "got all the good letters."  I heard that before. 
The good news? We had fun.  I will hang onto that.

May we always find the beauty in each encounter and let go of the "winning" so easily.
Amen, Amen and Amen.

Games

I was able to call Mom today and she answered the phone.  She sounded great to me.   We had a chat, so similar to what we used to do before she moved in, it was delightful.  She is having trouble making friends, but she is trying.  She is looking forward to having her new room which will be available in a couple of more weeks.  She told me about the ladies that could not play scrabble anymore who were mad at her for trying to help them.
She shared a conspiratorial giggle that J_ didn't remember how to make words but had all the good consonants.  Mom only had vowels.  Mom felt so superior because she still can play word games and enjoys being so smart.
We talked some more, about dinner and flu shots.  She reprimanded me on trying to do too much.  Just like before.  It was almost as if she were her old self!
I had not seen her nor spoken with her for over a week. I asked her if she had tried to call me while I was sick and I had missed it.  She told me that she doesn't do those phone things. Phones don't work for her.  She could not figure out how to make these "new ones" work. She could not remember what  or how many days I had been gone. She confused me with my sister trying to figure it out.

There are no numbers. Just words. No calendar. No clock. Just "then" and "you know".

I remembered why she moved in.

It will be ok.  I can do this.  She can do this. We will survive. Now to become grateful.

Amen.

Spinning Flowers

I recently participated in the Walk to End Alzhiemer's here in my community.  It was a very powerful and empowering experience.  It was humbling as well.  At one point we all held up our spinning flowers and an army of yellow(caregivers), orange (advocates), blue (folks with Alzhiemer's) and purple( folks bereaved by Alzhiemer's)  pinwheels filled the field.  We deposited our flowers into the hands of volunteers as we took off to march and when we returned we walked through a human made constantly moving "Memory Garden" of pinwheel flowers. Awesome.
When the walk was over most people retrieved their flowers, myself among them.  I was going to give it to mom, but as we now know, she didn't come home the next day as planned.  I put the flower in the ground by the patio.  Now as I sit, slowly regaining my strength from the flu, I watch that dynamic symbol of care giving.  Sometimes it spins furiously.  Sometimes it is still. Sometimes it suddenly changes direction.  When it spins really fast it looks like it is standing still.

That is as much as I can do , right now.  Observe, respond to the wind as it blows, and try not to get too dizzy.  Rest when I can.  Like the pinwheel, I am not now, nor ever was, in charge.


Amen, Amen and Amen

Perspective

One week ago mom came home to sleep over. She missed her cat and me.  She was so excited to get to cuddle with her cat, to spend a day with me, and to buy a bigger bed for her "new apartment".  She came home having lost some mobility. She was using a cane when I left her for respite but rolled out of the twin bed that comes with the respite room and bruised her behind apparently the day after she got there.  She uses a walker now most of the time but was beginning to use her cane again.  When she walks with the walker she looks a decade older.  She seems defeated. When she takes her cane in hand she swells with pride and is straight and power filled again.

I found her subdued, too compliant and quite sad.  I was sad too.  What made me crazy before; the 3 hour breakfast ritual, the feeding of my pets with constant people food goodies, the criticism of my cleaning and cooking skills, even the constant sighing and groaning, didn't bother me because I knew they were temporary.  I also knew that without her my world had become very empty.  I knew I really had missed her.  It was a good 24 hours but we were both exhausted when it was over.

I cried myself to sleep that night and woke with a nagging headache.

My sister took mom the next day as I stumbled through a difficult busy Sunday. Clergy workday! I made my appointments but was late.  I lost track of things and time.  My concentration evaporated in business. My sister sent pictures of the stuff they were buying for the apartment and questions about the bill for the facility by text and I could not face it.  I was hardly home by the time my sister called me to discuss her texts. My head was really beginning to hurt.

I was teary. Lonely. Tired. Defeated.
And my head hurt!

The next day, Indigenous Peoples Day/Columbus Day/Time and a Half for Work  Day,  I went to work, feeling odd and still holding the headache.  I was going to go mom's after work and help her get her room settled. Did not happen.  By 11A.M. I was back in the car on my way home with the worst headache of my life, too sick to work.


I got the flu.  I was so sick I could not get to the bathroom without help.  I could not move without pain.  I could not eat or even keep track of when I took the Advil to lower my temperature.  I needed a caregiver as I lost my ability to take care of me.

During my flu I used mom's tray, her cups with lids, her cuddly cat for warmth and her wisdom (when I could remember it) to write down what I could not remember and to ask for help. I got a one week glimpse into how helpless she felt living on the second floor when the stairs were unmanageable.  I felt some of the loneliness she felt when no one could come see me and I was too tired to or achy to use a phone or computer.  I felt a taste of her claustrophobia when I could not drive myself to the Dr. and had to ask my neighbor to drive me.  I felt a bit of the betrayal she feels from my brother when I needed my husband and he kept leaving to go to work, letting my unemployed neighbor come by and make sure I had soup and drink.

I am finally feeling a bit like a human.  I am only quarantined a couple of more days and I can finally handle food and the stairs again. (Tamiflu works!) Tonight, as I was coming back upstairs after being with my husband watching TV, I went to gather the tissues I had let fall when I was sicker and found my mother's cane!  She had propped it in the window, behind the chair when she had decided to take her walker on our shopping trip.  Together, in our tired and transitioning state, we had forgotten it and didn't notice.

My husband has been to check on mom three times since I last saw her.  She never asked about her cane.  I put her cane in a pile of things for him to take to her in the morning.  I cannot go yet.  I miss her.  I don't want to lose her.  I want her to keep trying to stand and walk tall.  It is depressing and defeating to be forced into helplessness.

I miss my mother.  I am grateful, in a very sick way, that I got this taste in a small way of what it was like to be her in our house.  It is helping me embrace her being with other elders in "the home." I cannot wait to see her Tuesday, when I am no longer contagious.

Grimelda, thanks for the worst headache of my life, four days of intense weakness and pain, sleepless nights and an overworked husband.  Thanks for gastric distress, high fever, a foggy brain and forced isolation.  Thank you also for good friends, excellent medicine, health insurance and Tamiflu.  I needed that.

Amen Amen and Amen.

And so it goes

Mom has decided she wants to stay at the facility where she went for respite.  I miss her.  The cat misses her.  She misses us. My sister is relieved. When does this start feeling like a good thing?

I'm listening.  Any time now.  When?

Implementing Plan B then C then D then E then...

In an effort to survive this experience, to enable my sister to help as she can, to enrich my mothers tarnished golden years and not go bankrupt, I have been exploring every possible avenue of assistance I can find.  I have been reaching out, asking for help since this began.

When I first realized this living arrangement was coming at me like a runaway truck, I started laying the groundwork for aid. The Alzheimer's Caregivers Support Group has been there with a listening compassionate ear, excellent resources for help and invaluable education. The hot line got me through more than a couple of bad days. This free lifeline has never failed me. Alz Hot Line

In spite of all our research, we could not be prepared for what lay ahead.  This Odyssey has rivaled Ulysses.

Plan A: Mom would live at my house half the time and my sister would take her the other half.  Her animals would live with me and her furniture and "stuff" would be split between the two homes.

FAIL 

My sister realized before the truck was packed she could not do it.  Her own family was already impacted by her husband's emerging memory issues and the very thought of adding one more thing overwhelmed her.

Plan B:  My daughter, a year out of college and working at a nursing home, would continue to live with us, help with mom and all the critters and stuff was sent to my house.  Mom would go to the senior center sometimes, would take care of her self during the day and I would be there to to be back-up.  My husband would continue on as if nothing had changed but our privacy.

FAIL

Before mom had been here two weeks my daughter packed up and moved in with her boyfriend, 45 minutes north, changing her support to three nights a week.  Mom would not even go into our local senior center because it was in an industrial building, tried the senior center in the neighboring suburb a couple of afternoons over about four weeks, and quit because the people were "mean".  

Plan C: Mom irrationally hated the senior minister at my church (where I am one of the ministers myself) and could not keep her mouth shut about it.  I could not take mom to church with me.
At first it was asking for my sister to physically take mom for Sundays so I could work.  She agreed to take mom one Sunday when I was scheduled to be in the pulpit and needed help. That day she decided to take mom to a different local church. Mom loved the church, which met at the same time my church was also meeting and for the first time since moving in mom had friends. My sister agreed to come down and take her to church every week.

Partial Fail

She tried and for the first 18 months she took mom to church a total of three times. She could not keep that commitment and a member of mom's church has been picking her up and taking her to church each Sunday since.

Plan C2:  Then I asked for in home help so I could continue to work during the week. Mom was not eating and needed someone home for meals and she really wanted someone to do her laundry besides me.  I hired first a couple of individuals, both of whom quit after a few weeks, and then an agency to help mom at home.  Through the agency we had several good and several not so good women come in and help.  We started with just a few hours a week on a couple of days and as mom's health and cognition deteriorated we upped the caregiver hours.  I in turn upped my hours working at the hospital where I could actually make some money to help pay for all this.

Eventual Fail

Why? Caregivers were making more than I was. BUT MOSTLY SNOW.  Our caregivers consistently were "no show" in bad weather. As a result,  I would not be able to get to work and being trapped in the house with mom was driving me crazy.



Plan D:   Once more, a change of plans.  We found a Private Pay Daycare mom was willing to go to. They were open early and late enough that I thought the hours were doable. People there were kind and caring. It was looking good. Mom was less bored. They were always there, even in bad weather. We did a mix of at home with private pay part time caregivers and two days a week at daycare. This was working pretty well for the rest of the academic year.  By summer, things continued to deteriorate. All of the beloved and reliable caregivers eventually left because they could not make a living wage working part time. They were not easily replaced.

Fail

Mom quit being cooperative.  She was getting too tired and there were no higher functioning demented people at the DayCare so she was declining. Her Caregivers were constantly changing which she found disorienting. And she ran out of money. 

Plan E:  Mom graduated to Medicaid and now our sources for help changed. The agency I had been using and the daycare facility mom had been going to were private pay only.  We switched to new agencies and sites so that her depleted funds would go further. With that change came many more... New caregivers, new layers of care (a nurse and case manager added to the mix).  And then a second layer..another case manager and another nurse.  Now the last of my private pay "hold out" caregivers joined the exodus.  With the government footing the bill their take home pay was cut for the same amount of work.  We experience lots of loss and more chaos, and ultimately, less help. With all these people I feel more alone than ever.  Everybody is trying, they all love my mom, BUT...now I have only 10 hours of in the home care a week, (We had built up to 30 hours) That is all that the insurance will pay for and the rest, if we want it, must come out of our own pockets.

FAILED AGAIN   

Plan E killed my ability to work outside the home.  I began to get more and more isolated in the ever changing crowd of caregivers,nurses, caseworkers, social workers and salespeople seeking to sell me a better deal.

DEPRESSION ULTIMATE FAIL!

Whenever I finally fall apart, the person who always promises but consistently makes things worse comes back.
Super sister to the rescue: She joined me to tour one of the ten assisted living places I viewed, and when my assigned caregiver didn't show up when I had a final appointment scheduled, she went on the appointment instead of me.  I saw four with one of my friends, one with my sister, one with my husband.  I made all the appointments. I spoke with and interviewed seven more that I chose not to tour. I regularly network with several "helping" organizations and their assigned rep.  I have not left the house except to seek a place to settle mom since the end of July. I have had five days not taken up helping mom all summer.  Three of those were entertaining my in laws and one more was helping my daughter pack for still another move, even farther away.  There are currently 19 post-it notes of people I need to speak with before the weekend glued to my coffee table.

AUGHHH! so next?

NEW PLAN:   Plan A+  Mom lives here with her animals and her stuff.  The ten hours of help from the government continues to come (when they show up) to help her bathe and light housekeeping. She goes to Medicaid funded Daycare twenty minutes away four days.  I give up the ability to work full time, ever.  On the weekend she goes to live at my sisters house so I can work Sundays.  Mom loses her church.  My sister loses her free weekends.  I lose my mind.  And we still have to pay out of pocket for any extras.  It is a sad state of affairs.

Assisted Living will cost us upwards of $5000 a month.  A Nursing home is free to us but costs the government $20,000 a month.  Once a person is on Medicaid and you cannot pay your way you have no choices left.

Please Grimelda, help my sister to stick to the plan this time.  Help mom and me to adjust.  Again.
I need more trees and less sand.  I need more flowers and less compost.

I just want to go sit with dying people and their grieving families again.  This care-giving is just too hard today.

Amen, Amen, Amen

Cicada silence

After two very hot humid oppressive weeks, tonight it is raining. As the rain falls it makes an incredible lullaby of splashing on the roof. As the sky releases it's pent up humidity, the air clears and we begin to breathe again.  The buzz of cicadas in the summer heat has transformed into a  sloshing chorus.  A wet baptism of change.

I write because it calms me.

The Buzz of Cicadas:
It has been a long time since I was able to write.  Care-giving for mom increased in intensity at the same time that work increased in intensity. My self care strategies only went so far and after two successful but too brief spiritual retreats (of sorts) I was immediately slammed with the necessary losses of summer, family depressions, mom's dementia and continued collegial burnout leading to work outages and with a different colleague, another hospitalization. On bad days I start thinking of Job.  I awake now, already tired, to battle my way through the day.  Mom's continual decline in functionality, my sisters well meaning but sometimes destructive help, my husband's growing depression and its considerable physical  symptoms, combined with mounting financial losses associated with the increase of PCA and HHA hours after mom's completed spend down have made things pretty bleak in the house.  Each hour of my days have been filled with painful and obligatory tasks related to the future and imminent placement of my mother in a facility.

I struggle with the idea that I am giving up.  In my mind I know that I have not.  I relate too well to her feelings of loss and frustration.  I find I feel selfish for the glimpses of hope I feel when we speak of "getting our life back."

The Summer Heat:
In my heart there is such greif and loss as I know that when she goes in, she is going to never return.  That was always so, but somehow, I thought this transition would be clearer.  I did not expect it to be my husband or my health that would exacerbate the move.  I guess in my heart of hearts, I hoped she would be the one that was so sick it would be clear.  That is not what has happened.  She has lost more cognition, yes.  Her personality has become resistant and feisty at times, which is new and unpleasant. She is so lonely and frustrated. Oddly it is the caregivers physical and psychical breakdown that is pushing her out.  She is the healthiest one here.
 With all the "help" I am getting from others, as welcome and needed as it is, my center is off kilter. I find myself making really difficult decisions with too many voices in the space.  I really need that clarity now. I seek that clarity I have prayed for, that vision that is sharp and obvious.

Cicada Buzz:
Now, it is as if I see the world through new multifaceted fly eyes and my human brain cannot make sense of all that it perceives.  So many choices- Independent living, assisted living, Nursing home, rest home, long term care, memory units, respite beds and respite rooms, Adult day care, Adult Group Foster Care, and now medicaid. Insurance covers this, but not that. If we pay for this, then we lose that.  All the trade offs, all the compromises, all the money, and lack of money, my head is cyclonic.  This program pays this much and these four people must see her first before it kicks in, and then when it does these three people must repeat the process.  If we want to add one more level of care, well that is four more people that must "check her out".  Now if we paid for this before the insurance was approved, well "we cannot replace what you were already paying out of pocket." So now sixteen weeks in and we are still paying out of pocket for things that now are not working or are not enough. 

Heat:
And did I mention work?  With our staff at 50% capacity the need to find time out is, well, frustrated.

I follow some other chaplains on forum online.  Recently they have been sharing with each other how they handle the stress of the job and balance their lives.  I read their recounts of wonderful retreats, stories of mutual support over desserts and coffee. I wanted to share my own strategies for staying centered, and wept. It was in composing my post, suggesting lunch with friends, writing, therapeutic massage, prayer and the liberal use of humor that I realized I was not practicing what I preach. How easily I had allowed my own soul care to be subjugated to the needs of both my chaplaincy and my mother. As I wept, I slowly understood I am not staying balanced and finding that serenity.  My intentional spiritual practice of natural awareness, my sacred walk of constant gratitude and prayer, that soul connection which has been my ever renewing source of strength and divine solace, has become reduced to a constant barrage of intense encounters with vivid holy moments.  The gentle quiet I cherish encourages ideas and calm to settle. That which allows experience to integrate into the soul has been crowded out. Everything in my world has somehow become adrenaline filled and crisis driven.  Oppressive.

The Rain:
Now comes the hard part. If I have to fix this, then I need to own my role in the chaos.  Grimelda, help me to make the time to care for me now, before I step in to care for anyone else. Bless the selfishness that lets us survive. Remind me that  I am responsible to slow down, to say "no", to prioritize and to accept, (ouch), that I cannot fix this. All I can do is ... all I can do. Let me see that while it will not be enough, that it will have to be, enough.

I write because it calms me.

After two very hot humid oppressive weeks, tonight it is raining. As the rain falls it makes an incredible lullaby of splashing on the roof. As the sky releases it's pent up humidity, the air clears and we begin to breathe again.  The buzz of cicadas in the summer heat has transformed into a  sloshing chorus.  A wet baptism of change.

Amen, Amen and Amen.

Day Care

Day three of day care.  I am beginning to relax.  Mom is making friends.  I am going to take a nap.