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.

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.

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.

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?

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?

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.

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

I speak the silence of midnight

I am once again drawn to writing to calm and restore myself after a trying few days.  The heat of summer has finally broken and the chill of midnight, wrapped in the occasional sprinkle of soft rain has soothed my anxiety.  Odd that it has also energized my insomnia.   I feel a call to write when I am finally silent.  It is as if there are words and images forcing themselves to the surface and if I do not release them somehow I experience pain.  It is often  I am seemingly forced out of bed and elusive sleep to put carefully plait my words, weaving them into life in a journal or on this blog.

 I love to write.  I love to craft vivid images with words and play with metaphors. I bliss out with good storytelling. I also love to read.  I am surprised I have been reading so much non-fiction lately as I usually prefer novels, mythologies and poetry.  I enjoy falling into a story, tumbling into the lives of the characters, seeking their meaning out of the adventure and holding their joy, pain or tragedy as my own.  I can escape, or just hide in a book, feeling safe. Glorious!I find it odd, that at this stressful time, when things are often grief filled and difficult, that I have not picked up much fiction.

Maybe I have enough adventure in my daily existence just now. It occurs to me that possibly I have been driven to understand this altered life. I have somehow internalized that if I just know enough facts about something I will understand it.  Perhaps that is one reason I have not been writing my own fiction much lately. (Fibletts to my my friends mom excluded) This reality is surreal enough.  Who needs to make something up when daily life is so fantastical?

So now I think I will try to see what meaning will come with this non-fictional adventure story.  It is a romance, a mystery, a thriller and horror filled tragedy. Sometimes it is funny and sometimes farce.  All genres are embedded within this tome.  I have started reading a college friend's memoir.  Perhaps indulging in this next art will help me learn yet another method of meaning making.

My friend from the Alzhiemers Caregivers Support group and I were driving home from a visit with her mother who is afflicted and struggling.  My friend and I had been talking for most of the drive home. I made some silly trite comment like "One more successful visit, One less day to do this"   when she said "How does this end?" All became silent. I know how it ends and so does she. Forgetting, death and grieving.  What we don't know, perhaps the real question is "What happens next, and how do I prepare for it? How can I survive and find peace with this?" 

Alzhiemers is a book to read with your finger on the last chapter.  It makes it easier to hold onto what is still there in spite of the losses when you know it will be gone. Hold on, the story is yet to unfold and the meanings and understandings come later.

And now, my heart is calmer, my mind at ease, sleep finally returns my affection. May the calm silence of the wee hours enfold us all in gentle slumber. Thank you, Grimelda, for this lovely night.

 Amen

Sugar is sweet and so are you...

I have been engaged in a continual "debate" with my mother about food. Her dementia is increasing, but her memory is not deteriorating as quickly as I had feared. On top of her dementia, she has really brittle diabetes. When she moved in with me, she gave me the task of planning her meals and monitoring her blood sugars. The numbers in her head "don't work" anymore and she was having a really difficult time doing it herself. I had no idea how difficult that would be. This has been challenging indeed. Mom isn't exactly cooperative. She is a very picky eater with a bizzare palate and has a voracious sweet tooth. There are simply only so many liverwurst on raisin bread with tomato and Miracle Whip sandwiches a person should eat a week in my opinion! My refusal to give her daily donuts and ice cream sundaes has met with much resistance.
When mom's sugars are off she is coo-coo. After she has been on a roller coaster with her sugar, highs and lows that are typical for her, she comes out "less". My heavy hand on her diet in spite of her protests has stabilized her numbers. I am her food bully now.

When I saw this article in the Cherokee Phoenix about unstable diabetes and dementia being linked I felt affirmed. It has given me the perseverance to continue to "bully" her into good eating. Meals have become a very unpleasant activity. I know I am not alone in finding the role reversal of caregiving a failing parent challenging. But honestly, tuna fish with nuts, apples, craisins and sweet pickles, mixed with miracle whip and spread on crackers? EWW and ICK.

If nothing better comes of this than that I control my own sugar, it will be worth it. But I admit, I hope by controlling hers I can slow down the progress of this disease that is eventually taking her.

Grimelda;
Help me find better places to hide the emergency candies and the sugar packets. Keep me from purchasing donuts by the dozen even if it is cheaper. Grant us all the ability to be satisfied with "mildly sweet" and the fortitude to stick to it under duress and massive guilt tripping. Let me once again take a lesson from the earth. Raisins and prunes are both sweeter than the grapes and plums they come from, but just look at them! May we all settle for sweet enough.
Amen

Persistant irregular blood sugars increase dementia chances - Cherokee Phoenix

a different route

A realization emerged from my foggy head tonight. In my grand effort to find ministerial balance I lost my way. Over this year I have been stubborn. I have been trying to run this life according to my own personal notion of what should be right. My biggest problem, I was wrong. Is it any surprise that I kept coming up against the roadblock of my own expectations and human limits?
I gave up after becoming exhausted and supremely frustrated.
I wanted so much to make it ALL work according to some controlled plan that I was blinded to what could be.
So now,after much definitive action and financial finagling, here I am, all rescheduled, hospital hours diminished, students returned to campus, congregational leaders at home carefully included in the circle of knowing, and the caregiving helpers engaged. It looks as if all has smoothed out and the chaos is contained.

But there was still such grief. Such sadness, gloom and doom hovering in the air. My life had become mourning and I yearned for some colorful happiness in the mix. I had quit enough. Lost enough. Torn down enough. Surrendered it all to the chaos of creation. Behold the holy spirit moving in the world. Grimelda to the rescue. I made a leap of faith, answered an ad for a student seeking a homestay, and now with rejoicing, life! Youth, all growing, building, learning, truly vibrant,has moved into my spare room in the form of a young man attending high school classes far from home. His excitement and sense of adventure wakens us from our self centered nightmares and brings out our loving parenting best. This caregiving I know and understand. This I remember how to do with fondness and competence. And it is not just I. All the attitudes of my resident family has also taken a turn towards happiness. The fog remains, (curses on Dementia), but the energy has improved. All of us loved being parents and our homestay was looking for just what we needed to give.

So, I work less at the hospital, but am still there sometimes. I have new students and work at the campus with much excitement always there in the first weeks bolstering my energy. Our student likes us. His family likes us. ANd it is a mutually beneficial pairing. Mom loves having another young one around to tell her stories and worry about.
Life is not just balanced, it feels good.

I know that all is fluid. All is changing, but just now, this minute, awaiting the onslaught of a hurricane...I have balance.

I am going to sleep well tonight and dance again tomorrow.
Thank you Grimelda.

Letting love loose

My transition from Hospital chaplain to occasional fill in chaplain has reached its calendar date. The students return next week. I have but three days to regroup before they arrive, hungry and excited. Hallelujah! New Life!

What a long summer this was. Tonight I listen for the rain's return. The heat was dire. All my unshed tears now dried to salt. The arrid dust fills my nose and eyes, my long lost garden turned to seeds and chaff.

Gentle rain, my songs have been too silent for too long. Let the sun drenched soil, and my own parched spirit, be renewed, refreshed and sanctified in your holy blessing. After this drought that has somehow mirrored my own grief, let this baptism by sprinkling renew my soul in hope.

Amen

accepting help

Under great stress I go to the hairdresser. Don't you? So back from my latest wedding gig, I go for a "do".

No words. Very tired. (Messy) Said "help". Got some. (Lather) Feeling better. Still silent. (Rinse) Getting perspective. Said "HELP". (Repeat) Some things just need time and attention. Some need action. And some just are.

Resting and being is helpful.

Just tired. Thanks. for the help. For the break. For the moments of clarity. For the time.


I am never this silent at the hairdresser. I dare not say it aloud. The terrifying truth. Only in heart does that spectre burn. Horrifying is my reality. In the middle of the ceremony I forgot the groom's name!

Someday my words will return, unlike mom's. Is it stress? Is it menopause? Is it ... "IT"?

HELP ME GRIMELDA!!!!

Please...let me find my words again. Let this be anything else. Once again that niggling fear. Always there. Like the dull hum of cicadas in summer heat. The distant rumblings of thunder echo on the mountains. The storm may never come here. I still smell the wind, and get prepared.

Rest.


AMEN.

and another option....

Today I played. Really played. A good friend from life is also dealing with elder care stress and today we played. Both of us got in my car...drove to the big city and spent the day doing the tourist things we did a lifetime ago with our young children. This time, instead of their wiping noses, making a mad dash to the bathroom so they could get to the potty on time or avoiding the noisy exhibits so as to minimize whining, we went as ourselves. I still wiped noses, my own. We still sprinted to the bathroom but this time I only had to keep track of myself! And we went to the lightning show and actually watched it. I laughed! I feel better too. This was a really fun time. I have been trying to balance without all the parts in play. Work and play!

Thank you Grimelda. That was a great day!
Amen and halleluyah.