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

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.

out from the ashes, again

Today was support group.  I look forward to support group as if it were the only light in a storm.
Today did not disappoint.   It is no secret I am struggling right now.  I have been more depressed than this but I don't remember ever being this tired.  I must have been, but I don't remember it.   All this week I have been struggling to regain my physical strength, and my emotional fortitude.

One of the most outstanding moments for me today came as we were exploring ways we feed ourselves, healthy and unhealthy, when we are trying to refill/renew from the constant stresses of caregiving.  At one point, it was my turn and our group leader asked me, as she had everyone serially, what do I do to recharge.  It was to be something other than escape (like reality television or sleeping). I read that as something intentional rather than just surrender.  As I struggled to think of ANYTHING, I realized how depleted I truly feel spiritually.

I finally admitted all I wanted to do was crawl into a corner and sleep for a year.  "depression", my recurrent companion. So, been there, done that.  What worked in the past to get out?

oh crud.

Pray. Check.
Meds. check.
Therapy. check.
Whine appropriately. Check
But what was the one major thing I did every time in the past?  Before the others?

I quit my job!!!
 (did I just do that by moving mom?)
I took a long break from whatever career/job I had and let myself BE. I took  from three months to 18 months, and retooled for something else. I went to school, changed careers, three times I have burned out and three times I ended up...moving on to something new.

Crud. Really?
I kinda like this job.
*sigh*

Before I do anything so drastic, again, I am going to really think on this.  Oh, who am I kidding, I am going to Grimelda.

Grimelda, who some call god,
ummm, Really?
Listening here.
Any time.

I'll be the one napping and waiting for enlightenment over there in the chocolate aisle.

Amen, Amen and Amen.

finding home

I actually wrote this a year ago.  I didn't finish the post and it was sitting in "drafts".  I am amazed that I am yearning for a different burnout.  Progression, slow but steady.  Hate he disease. Love the lessons.

October 2010

I finally got away, really away, an airplane trip and a week without work or mom.  I do feel rested.  It was good. I went to Sedona, Arizona, someplace renowned for its physical beauty, hiking, Native cultural sites and spiritual healing places.  I enjoyed the hiking. We joined friends there for the first two nights and that was a good time.  As usual, I ended up listening to the stressors and greif of others, but this time I didn't have to.  I care about these people and their stress is so much more than mine, I found it illuminating.  I feel affirmed that I actually have achieved more balance regularly. I like my life, crazy as it can get, and we are doing OK. The views were incredible, in spite of the coolness and recurrent rains.  There were all sorts of places where folks were clearly seeking connection with "Grimelda".

Thanks Grimelda!
Amen.   Oh and I posted twice today... It happens rarely.

Test Anxiety?

I listened to a special on Alzhiemer's Disease on WBUR this morning.  Today's segment had people on it reflecting on whether to get themselves tested or not while they are asymptomatic.   There is a family legacy I hold of "sweet demented old ladies" as my precious daughter calls us.  On the program the siblings whose mother has early onset dementia declined to get tested.  They did not want to know.  Since there is no treatment or cure, what was the point?  They felt it would just have them second guessing if "this was it?" when ever they were forgetful.

The series is called fade to darkness and I recommend it.

Fade to Darkness

My mom went on Aricept long before she was symptomatic to the rest of us.  Now maybe her dementia isn't Alzhiemer's, but it was diagnosed as that when my grandmother also had it.  Is it possible that she has been spared such a fast decline because she chose to be treated early?  From my own perspective, I have not been tested, not because I worry about knowing.  I pretty much assume, to my husbands chagrin, that I will get it.  No. I don't want to be tested because then I would have a "pre-existing condition" and fear losing health insurance coverage.

What about you all?  Most of the folks who read this are family caregivers. Why or why wouldn't you get tested?

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.

Time

....................waiting to begin again even beautiful days are long.

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?

mom moves to a facility for 18 days

I am throwing in the towel.  I surrender.  Done. We will be back after I catch my breath..

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

Cat Treats

It is common for folks with dementia to repeat themselves, at least some of the time, on some question. From the first moment of the day until time to go to sleep, my mother's world rotates around the imaginary needs of her cat.  My mother's question is "have you fed the cats yet?"  Seven or eight times in an hour.  But it isn't just feline nutrition that drives her. Mom won't leave the house until she is sure all the animals are fed.   She won't eat her breakfast until she feeds them treats. But it works both ways. Because she is often too picky to eat what is prepared for dinner, I won't feed the dog until she eats her dinner. The dog does not mind, and mom eats.

not mom's cat

Clearly it is bigger than just the food.   She won't go to bed until they are located and secured. She cannot relax until her cat is taken care of. She wants to go hunting in antique stores so that her cat can have a throne like the one on her calendar.  I used to dress up her delivered snack with some of my best little dishes. I had collected antique salt cellars (tiny china plates) and used them with my dolls when I was young.  I put her pills on one on her tray one day.  Now that, and every other tiny dish I have, has become a special "treat dish" for her cat. She has usurped all my special little  dishes to be solely for her cat! I now have to bring her an extra fancy glass of water, having done it once, for her pills.  She now insists that her water glass be filled to the brim, after she finally gets her pills down, so that her cat can drink easily from it. "She likes it that way."  I try to stop the silliness but she broke three tumblers doing it herself when I didn't comply. They are just glasses, and it makes mom so happy.

 Mom sits with the cat on her lap in a recliner most of the time now.  She stopped coming downstairs regularly sometime before May, unless my husband was going to be there. Her arthritis being so bad, to ease her pain, we sometimes would take her her meal on a tray. Funny. When she is given her meal that way the cat climbs in the tray, making eating next to impossible.  If you try to remove the cat, my mother tells you you are mean and pouts. Forget going anywhere if the the cat is in her lap. As soon as that happens she will not get up, lest she disturb the beast. She will sit in uncomfortable positions, do without a needed item, even wet her pants, before she will move the cat.  It is as if this cat is her whole world.  It is quirky, demented and kind of cute if annoying.
In a world of such losses and pain, the happiness this beast brings mom is a gift.

Yesterday, when I was helping mom meet the people at an adult day care center we are hoping to use my cell phone rang three consecutive times.  It was a freind, trying to reach me in the hopes that, of all things, I would feed her cat while she was away for the weekend.  I had ignored each ring, allowing it to go to voicemail, in order to finish the paperwork with the program director so mom could enjoy her day.  When it rang a third time, I asked if I could be excused to take it.  Mom looked up at me in all seriousness and wet eyed asked if something had happened to her cat.  The calls were from a neighbor fifteen houses down the street.  The cat was at home where we had just left her well fed self less than 20 minutes ago, sleeping on mom's chair in her room while my husband worked at home.  Really mom?

still not mom's cat

I asked her why she thought her cat was hurt, and even  more interesting, why she thought that all my friends were calling simultaneously to inform me while her son in law, who was there, was not.
 She responded, "She is my daughter." "Mom, I am your daughter," I replied.  "You got married and left, but she stayed."  Really?  Apparently the cat is my good step-sister, and my friends are more loyal to her than me. Explains a lot.



Good to know I guess. How do I explain what comes next to her? It breaks the heart.  Few if any places will allow mom to keep her cat. The ones that will are way too expensive.


As we prepare to go get a birthday gift for a family member today she has reminded me six times. "We need Cat Treats."



meow, meow, meow?

Day Care

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

The melting (down and otherwise)

  It has been an intense time in our home for the last month.  As the weather here has finally eased, the walls of snow slowly dissolve, revealing huge potholes in what  was the road to our house last fall.  This is the wrath of winter in all its destructive power.

As Mom has weathered the winter, I have grown more physically and spiritually drained.  My own sanity besieged.  With this sluggishness of spirit and cognitive function, I realize that I can no longer leave Mom unattended.  I have seen her thought processes decay this last season.  Little things, like going to the store for fresh vegetables or even out coffee and doughnuts, things that we did so joyously together at this time last year,  now have a muddy, murky quality.  Although I have watched it happen, it still comes as a surprise that her world  has now become so small and measured.

Sometime this winter, almost unnoticed, Mom quit trying to use her computer.  She had been saying my husband had "unhooked it and not put it back".  He did borrow her monitor a few times to use with his laptop, but I had reconnected it several times.  She just...stopped.  No fanfare.  She stopped, and now...? Just...gone. Mom quit initiating phone calls over a year ago. She was not able to sequence numbers and was getting too frustrated.  She quit answering the phone, even with caller ID, months ago.  I now hand her the phone when folks call. She hands them back muttering "I cannot hear on these things! You do it!"

I suppose in the grand scheme of things, this is just one more complication of a deteriorating mind.  The consequences of this change are enormous.  It has cut her off from her family.  Her whole social life has suddenly been reduced to my household. Now, most days, my husband and I, along with the two ladies that I employ to help out, are her only human contact. 

Mom's children and grandchildren have settled all over the world. A lifetime of welcoming the lonely stranger into the family has created a vast web of relationships, only some by blood. All of these people are her family of the heart. Now that Mom no longer uses e-mail, or the phone, they have no way to stay connected with her, except to physically visit.  Not all of them understand Mom's condition. Some that do, especially the younger ones, do not have the means to come see her in person. If they do not reach out to her soon, I fear it will be too late.  This disease is rotting her memories.

My own children live close by, and visit frequently enough, so she knows them.  What is becoming painfully clear is that Mom is losing her ability to recognize even those she loves when they change appearance. Although she knows they should age, that a child she last saw as a toddler is now a pre-teen, the image in her heart overrides all attempts at logic. She knows us by what we looked like were when we lived with her.

This inability to utilize electronic communication, and the telephone, became starkly clear in the last two weeks. We have one part of the family living in Tokyo. When the earthquakes and tsunami hit, and the nuclear accidents filled the news, our entire scattered family's thoughts were with them.  Ironically, our only communication with them has been through Facebook posts made from my "sister's" smartphone.  For those of us glued to our computers, we have followed her detailed posts of her experience with a mix of hope and terror. They have been having a harrowing, life altering time. Thank God they are doing okay.

Since there was nothing she could do, and she was already so sad, I tried to protect her from the anxiety of the situation.  I did not immediately share with mom what I was doing always online.  I forgot that Mom still reads the paper and that she understands most of it. Once I realized that fibletts were going to be useless, that her depression was growing, I relented. I diligently read aloud each of  those posts to Mom.  She knows all is okay with her "girl"and her baby (he is now 10 years old I think) and no longer asks.

Once again, it is surreal to share such intense and life changing events with a mother who cannot hold it in her memory.    Mom pines for her family and they are always otherwise occupied.  It is all so sad sometimes.

Most of her only son's family lives over 1500 miles away. They had two big events this month.  One of mom's grandsons got married, adding both a granddaughter in-law and, with her daughter,  a new step-great-granddaughter.  Meanwhile  a new great-granddaughter  was also born this month to a different grandson and his fiancee.  While Mom is delighted with the new additions to the family, she is also agitated. She cannot remember their unusual names, or recall who belongs with whom.  Mom has no concrete context. She has no way to hang onto their names or faces. We have no pictures (they are all on Facebook or attached to e-mails she doesn't open). While I repeatedly show pictures of my brother's growing family to her on my laptop, she says things like "That doesn't look like him" while looking at current pictures of her only son, or "She is cute, which one is that?"  She knows she has more family than she sees but they might as well be invisible. Now they are reduced to confusing people she yearns to know, but holds no hope of meeting.

It robs the happiness out of what used to be so joyous. It makes me whine.

It isn't just Mom that is hurting. My family's self protection habit of keeping physical distance from Mom also isolates me. That has been difficult to navigate. When I expected to be happy, instead I am flooded with negative emotions.  I am angry that I could not go see the family when they gathered to celebrate the wedding.  Mom's family is also mine. It is normal that miss them too.  I want to embrace them too. I want to smell the sweet scent of the newest baby.  I resent being left out.  It is making it more difficult to find that Love that sustains me.  I am so jealous of my local sister's freedom to travel, it is currently difficult to contain. I fear I am growing bitter.

Then I remember ...Mom.

How petty of me because I can at least have hope of meeting them eventually.  I can friend them on Facebook.  I can have some form of relationship with them other than  just words that fall through the holes in my memory.


  
The intensity of all this has taken a toll on me.  These are my family too.  I process all these feelings at support group, with my colleagues at the hospital, with my therapist, even here in the blog.  But mom only has us.  And I fear , right now, it is too much for me. I am hoping to help both of us by getting her in an adult day program.  I  pray she gets some new friends.  Someone with whom  she can find joy again.  Someone with whom she can  grieve. Someone to share a meal who isn't obsessed with her nutrition. Someone to talk to that isn't always overtired and distracted.  Someone else.  Not forever, but for a little while.  Someone not me.

On this second day of Spring, we have just had still another new snowfall.  The sun is rising and so is the household.  I was just beginning to see the hope of lawn under the glacier pack outside. The new snow hides the potholes temporarily.  It will not last.  It cannot.  But it is inspiring anyway.  I will now allow Hope to soothe my tired bones. 

Holy spirit, I pray for containment of all these "melt downs".  For the safety of all loved ones, even those I have yet to meet.  For the reconnection of human souls through friendly communion, for the strength to persevere as things continue to fall apart, melt, transform and redefine, and with hope for all, a good nights sleep tomorrow.


Amen


Amen

amd

Amen

slowed by snow

It has been a long time since I made myself slow down enough to write.  It has been survival mode for so long, I think I just adjusted to it inside and now I am functioning again. Tears and anger, panic and prayers, all help me through.  I sleep more now and the other moments are full of being mom's executive function. Is it good functioning? I refuse to judge. It is working better than before, but still isn't what I was hoping for.

Disappointment is common as snowstorms in New England.  Frequent and intense.  It makes me slow down at any rate.  Although I have been too occupied with the interminable tasks of living to write, I, and my connection to the holy have been growing. So much happens in silence and the dark. It has been a long uphill climb to adjust to my lost illusions of freedom and self determination.

When did I get the idea I had choices anyway?  Letting go of more of my self and redefining ministry to fit my reality still only goes so far in my soul. I just feel betrayed. I resist what my heart finds painful.  I try faking it, but to little benefit. I have grown adept at "fiblettes" for the demented, but it falls short at home. The problem is that I know when I am lying to myself, so it doesn't work very well.

So now, snowbound. Living in the strange yet beautiful white dunes of mega-snow.  Isolated by the "snowball effect" of a Blizzard or Winter storm event every  couple of days that keeps my students and my caregivers far from me and all of us locked inside. I am now unable to hide away from the disease that steals mom.  The constant winter has forced me to care for her,  too much and yet just enough, alone.  For a month plus.   With snow engulfing my world, I have few choices.  I am here.  No one else can come, even when they want to. And like the ever growing snowbanks prevent me from seeing the road, the constant exposure to mom's mental winter, prevents me from ignoring the reality. Now, to embrace that cold truth, and find the joy anyway. 

I know there is a metaphor for the slowing of mom's brain that parallels this constant barrage of winter white. It is beautiful, dangerous, and can literally bring down the house if we ignore it and don't clear it.

Our physical bodies ache from all the shoveling.  Our cabin fever is at a high pitch and worrying about the next storm only makes for a sour stomach.  The weather will continue at its' pace, not ours. Snow will still come. Reacting is sometimes the only option.

For now...It is pretty, and it will be a very green summer with all the melt.  That is all I can get to right now. but it is something.


It will have to do.






And it is enough.






Amen.

and why not? Take mom to work day

With caregivers unavailable I found myself with mom and work appointments at the same time.  It was Alzhiemers awareness day and I was stuck.  I had a bimonthly staff meeting at the hospital and a peace day vigil to accomplish, neither of which I could really miss or get a sub for. So, I dressed in purple and brought mom with me.  Surprisingly, we had a pretty good, if occasionally awkward day.
Today was not just International Peace day, not just the Spring Equinox, not just Alzhiemer's awareness day, I added one more!  Welcome "take mom to work" day.  A bit of a switch since I was younger and it was "take your daughter to work" day, but everything is topsy-turvy now.  Thanks, Grimelda, for purple sprinkled donuts, understanding supportive colleagues and interesting times.

May peace prevail on earth.      http://www.worldpeace.org/

Amen

After respite, panic

After a month of planning and an incredible amount of finagling, I managed to get 48 hours of respite.  This time it mostly worked.  It fell apart in the last three hours and now I am up in full blown back spasm and pain. Panic has returned to me.  Pardon me but...WTF?

Too much stress so I chose carefully my respite activity this time. I went away to B&B and for a spa day. That was wonderful. I had massage, body wrap, a manicure, pedicure a facial and my hair done. It was so nice to be taken care of and pampered.  I took a dear friend with me who was also a good caregiver. She did all the driving and helped with the planning.  The B&B was a little tired, but the innkeepers were pleasant and the gardens beautiful. I spent way too much money and never really had a good meal,(just bad luck mostly) but the company was good and for the most part the trip was very relaxing.

It is hard to get away. I got a phone call at least once a day to help with some detail, but the stress level was much less. My one big regret is that I didn't get to see my daughter. We almost made it but had to let it go at the very last minute. That is the source of most of this pain I think. My disappointment  at not getting to see her.  Daughters and mothers, what a job we do on our emotions with this amazing love relationship! She moved out permanently just a while ago (7 weeks maybe) and yet I miss her warm yet snarky presence constantly.

  Seeing my daughter in our plan came at the very end, like dessert. It was to be a short visit, no more than a hug, a tour of her classroom(she is a teacher now) and  a chance to feel her in my arms.  I had to cancel it and come straight home when my caregivers son was hospitalized and she had to leave.  My family members were not around for many good reasons involving life and there was no family back up here.  My best support, she who calls me PW, my friend from the caregivers support group and life, came at the drop of a hat and stayed with mom till I could return.  I am grateful.  But I am in such physical pain tonight from grief, I cannot rest.
I feel as if I used up everything I had to get away only to come back into a well of anxiety and pain. pain pain pain. God, take this sadness, this heartbreak away. Fill me once again with your love.

I fell asleep finally at 4:30.  I got up at 7am and we are back to the routine again.  I am planning a way to see my daughter now.  I hate exhaustion.

Amen