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.

not quite lost

I have way too much to say and no time to say it.  I feel lost in my head. 
Today I found a new help. A peer support group for chaplains in my area and ...I am no longer quite as lost. Just sojourning.
Thank you Grimelda.
Amen Amen Amen.

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

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.

redefining normal

Today was really difficult. I left my mom in the hands of her extremely competent caregiver, a lovely woman from Ghana that I found through an agency, and escaped. I am not sure when exactly it became so difficult to be around mom during the day. It could be when she began fighting me about everything. Suddenly it seems she disapproves of so much I do, or try to do. She complains about the time I spent at the hospital.Now it is also about how I make toast,or planted flowers, even what friends I chose to see, when and how often. I struggle to understand why this conflict.My guess is it is akin to frustration. It could be her ever increasing competency losses, and all that represents. It could also be the lingering wisdom, buried under all her aggression and confusion, that I desperately need and we cannot access. It could be the new behaviors she cannot change yet that I find embarrassing, extremely inconvenient and emotionally draining. It could be that I have just gotten tired always being questioned.

At any rate, it has become unpleasant for me to spend long periods of time with my mother. Her needs seem to always trump mine until I lose myself in her care. I know that trap and am trying to avoid it. What is worse is it isn't just her needs but her every desire that has become mine to fulfill. How did this happen? Maybe it is because I have begun to resent not getting to eat food I like, go to church unencumbered, Or even decorate my home as I like. New normal now has negated my ability to plan my day without a power struggle. This is all so very new, and now constant. It wears me out.

So...I bought some time from the caregiver and I went back to work. I first went to my campus job, always slow during the summer, where I enjoyed lunch with four newer to me students. It was surprisingly odd, as what had been a pretty stable group of religious seekers just a few weeks ago morphed into an eclectic band of unknown anxiety ridden lost souls during the summer months. It was different, but still good. That filled three hours. After the campus lunch I went to the hospital getting a few precious hours of hospital time in while my extremely competent replacement is being oriented.

I am nearly out of my hospital job. My ill colleague has returned,still very shaky, from her extended leave. I cannot help but worry for her as I think she came back before she was ready. When I decided I had to leave this particular chaplaincy a mere six weeks ago myself and gave notice of my intention to be releasing the position to my supervisor, arrangements were made and my replacement hired. She began work the same day that my ill colleague returned, just a few days ago. As NewCHaplain is being brought on board I agreed to help the team and do a few more hours while she is brought up to speed.

As I enjoy the day I become aware of this trap too. I should have just left. It was hard to leave and the seduction of the ministry is strong. I love the work so much and my willpower is weak. I have friends there and with mom I am extremely isolated at times. I worry I will lose my balance again and would continue in this bad job after leaving if they only ask.

A few hours more, seeing patients and helping with office clean up, navigating the computer programs and explaining subtleties of hospital policies and politics, I am once again on my own and headed home.

Oh great spirit,help.

I am surrounded by folks that are better at what I do than I am. In theory that is good and normally I would rejoice to have such great colleagues. And actually I do! Right now, I am just so sad. I have failed in my heart, somehow, to be the caregiver I wanted to be, and that mom needs. I have failed to balance things enough to keep a beloved hospital ministry going. But mostly, I have failed to maintain the connections that I need to stay strong in my faith.

Grimelda shows me the traps of this thinking. She reminds me things are meant to change. Normal is fluid by design. When I stumble the ones who are given the gifts I drop are grateful and all is not lost, just different. Mom likes her caregiver. Her caregiver likes her. She enjoys her work as much as I enjoyed mine. The students will return, always new ones anyway, in September. New Normal can also be good. As River changes its path, it is still a river. All stages of the tree are beautiful in their own way and many depend on it to thrive. Change is neither good nor bad. It just is, and that is glorious.

AMEN

Call Waiting- Call Forwarding-Wrong Number?

I indeed feel in the desert now. I know there is life here too. Not the green familiar. No. Not the lush blooming delicate flowers. Not the soothing green forests. Not even the wet mud of melt and infernal buzzing of bloodsucking insects! This is more than summer. It is an internal climatic shift. My life mirrors the world around me after all.
I must learn from the lizard, the tumbleweed and the baking rocks. Find that new beauty. Right now it just feels dried up and cooked.
After two months of covering for the absent full time chaplain I am cooked. I kept cutting the hours, moving them around, dividing them up into smaller segments, and even so, I cannot make it work. The pay is so small as a per-diem employee that my take home is less than I am paying the caregiver for mom. The reality that I am paying to work, literally, has finally lifted the blinders. I am leaving the job. It makes me sad. I am fighting the grief and building resentment. I also know there really is no other option for me that makes any sense and that makes me angry. So, will I go back when mom progresses and is gone? Will I go do some other chaplaincy that is perhaps more manageable? Or, hope springs eternal, better compensated? Will I just give up? Right now, I don't know. I do know that this adventure is over and it is time to let it go. I loved it while it lasted.
Go with God, hospital chaplaincy. Rest in Peace.
Amen.

making hard choices

For someone who has no full time job I sure am busy! It is spring in every sense of the word. The rain has finally slowed leaving the rivers flooded, the basements puddled or worse, the air through open windows is damp and warming, the smell of wet is everywhere. The spring cold that I claimed was allergies has proved me fallible. We have had the whole family coughing for days now.

It is currently holy week and there are church events ever few minutes! The Hillel students have taken over our religious house to create a campus wide Seder, meanwhile the Christian students are scrambling to get to the various houses of worship for mass, Maundy Thursday, good Friday and of course Easter. The palms from last Sunday are braided into crosses, the matzoh from Monday is stacked on the shelves, the rooms are triple booked as every religious club on campus hosts a big event. Where did all these hard boiled eggs come from? All the while, in the background, is the slow drum beat of terms impending end and the pre-grieving of seniors having one last party, one last concert, one last festival. Spring is the most conflicted term of the academic year.

Meanwhile, @ job number two, the hospital. The full time chaplain, who is both my colleague and my friend, was taken suddenly and seriously ill last week. She is now out on medical leave for an indefinite amount of time. The rest of the pastoral care staff have asked me to cover for her during her absence. I am conflicted.
I have been trying to figure out how to balance just one day of hospital chaplaincy and care giving mom for months now. How in the world am I going to do this full time for a few weeks, or possibly months?

Job #3, the church has given me room to breathe. As a back up minister for them, the Sr. minister takes over for the holidays. Thank you God, in so many, many ways.

Now for job #4. Mom. She is finding her new church exciting, but she too is struggling. Everything at my house for the holidays is different and nothing seems to make sense. She is growing more anxious as she tries to do more things with outsders (a good thing) and cannot keep a calendar or a clock in her head (a bad thing) not to mention phone numbers, or names of folks. She is trying so hard and is so frightened underneath. I wish it was different. I try to ease things but it is next to impossible to fill a bucket that has no bottom. I pour the information in and it just has no place to land. She remains thirsty in spite of the constant flow. I have hired the home helper to come all week, just to get us through, but what is next? How long will this last? When is the next plateau?

I spin, I spin, I spin. As it is, I am so tired I allowed myself to get run down, resulting in first me then everyone else getting sick.

It is time for me to get set for class as today is a campus day, but I carry the hospital pager "in case". What in the world will I do if it actually goes off during class? I am not the only one that needs a better plan. But I definitely need a better plan

Creator, lead me as I am turning endlessly in circles. Amen

Back to Work

The work pressure is on for me as the calendar doesn't care if I have time and as I have already lost two days to this cold. I went back to work today before I was well. I am sorry. I feel doubly bad because the woman I pay to help with mom was just hours past a bout with food poisoning herself. We both were at the Dr. yesterday. Mom's aide had called in sick yesterday, but feeling well enough last night, had come in weak but no longer "ill". My nose had quit running, I still cough though. Dilemma for both of us: No work-no pay. As independent contractors, we don't get sick days. I could not reschedule my meetings, I could not leave mom alone, the aide was sure she was not contagious, the students are going to come plan for the upcoming holidays and there is not a substitute for me, so with the promise of mutual low functioning and safety first,(love that Purell!)we made a pact. Mom's aide would do little besides make sure mom was safe.
I would guard my coughing and go to work. I would just keep the meetings low key and beyond coughing distance. I also promised everyone to return as soon as soon as I could so that we both could get back to bed. It was the best we could do. Mom seemed to be OK with it, so that is what we decided to do.



Honestly,sometimes I feel Mom would have me stay with her 24/7. I cannot. As much as I love my mother, and I really do love her, I also love chaplaincy. I feel alive to be out there, doing what I do. This day was exactly one of those days. By 10 am I was helping Hillel students plan their Seder, it isn't easy juggling the responsibilities of kashrut and academics. I had already joyously accepted the invitations of the GSA students for the Pride dinner,and I was looking forward to having a quick connection with a protestant student that had wanted to talk about her boyfriend when my cell phone went off. I thought it was about mom so I answered without looking. It wasn't.
I unexpectedly was called to another site, a place where I had been singing hymns with mom as a volunteer, to help someone we just barely knew. In between volunteer clergy, they had found themselves in urgent need of a protestant clergyman. I responded to the emergency call, and by 11 I sat with an aged severely ill woman and her family as she, having taken a sudden turn, prepares to die. The Spirit descends and surrounds us all. Silence. Her unique dying process begun, her beloved family gathering from distant homes,together we share prayers, blessings and amazing grace, the mystery of her passage remains, her final days or hours surrounded by the love she built over her lifetime. It is palpable, her legacy the devotion shared,The grace of awareness among her family and caregivers, Hospice at its best, this blessing I witness and hold in gratitude.
I relocate again. It is 12:30. I must return to school. Class is at 1. Discussion is lively, the energy of Spring and new adulthood fill my heart. As I leave after class I realize I missed lunch. I go home at 4 to find my caregiver already gone, relived by my daughter who has come home early from work, herself sick. She has a cold. She is too ill to drive to her own home. She wants to stay here and be taken care of. There goes the rest of "my rest". I cough, finally, relaxing. This is Home. As I reheat last night's chicken soup, find a Popsicle and pour a glass of juice for my adult daughter, Mom says,"Did you get all your stuff done?"

Yes, mother. Yes, today I got all my stuff done. And I am tired. I am taking tomorrow off. We will take the financial hit.

Great creator, Thank you for this amazing life, bless the young and old in their fear and frailty, hold us all as we find our way through, and may we all be ever aware of your constant love and care. May the love we share be constantly returned, and may all of us be surrounded by Compassion when it is our time to die.

Amen

caregiving circle

Ahhh. Monday! Today is my day off. I get one, and only one, every week. It has been my day to have sabbath and recharge for years now. I long to sleep in, call friends, poke around the house. Do Nothing. Recover. Recharge. Renew. After a week of sitting with the ill and dying, being present for the questioning soul and preparing sermons, I long and need a rest. I have built my ministry around that one day of renewal, holding it sacred so that I can effectively serve.


Mom took care of her mom. Now she is need of care she lives with me.

Monday. This morning I awoke to the sound of her shutting the door. Not ever a good alarm clock! She had let the dog out to potty,(bark at the school bus) but in the process let both indoor cats out as well. She is awake. She decided to try and make coffee for me, something she has not been able to do for at least a year, and discovered (again) that she was unable to accomplish the task. By the time I managed to get out of bed, grab my robe and race down the stairs she was weeping.

All She wanted to do was take care of me. That is what mom's do. But she could not remember how to do the simplest tasks. She could let the dog out to bark, as she says, but that had not worked right either. She had lost her precious cat trying to help with the dog. As she was tearing up,sighing her helplessness into her torn tissue, the alarm went off upstairs. It is now 6 am.

Good morning mom. Don't worry. Go get dressed. I will take care of it.

I re-made the coffee. I found the cats and gathered them indoors. I stop myself from sitting on the couch and answering e-mail from work. ( I have a deadline for a newsletter at noon that I put off last night) Breakfast must get served and Mom settled first. I feed the dog, also the cats, pour a cup of coffee for both of us from the still brewing coffee maker, (I love the auto stop drip do-hickey) and taking a banana (so she can take her pills) and the very hot beverage back upstairs, I find her, sitting in her recliner, petting her cat, (How did that cat get up here so fast?)" I got my banana already". Ah. Well at least that worked out for her. I go back downstairs and make the eggs.

It is the little things after all. Thanks mom, for your wish to take care of me.

Over breakfast she asks the same questions every morning. Today is no different, if a little earlier. "Get the paper?" "You need to feed these animals!" "Where are we going today?" "Do we need to fix those people today?" (This is how she refers to my hospital chaplaincy) "You need to get dressed." "Where are you going to be today?"

We go over the calendar again. This is when that appointment is. This is the day I work at the Hospital. This is the day that I teach at the college. This is the day of the support group. This is the day of your haircut. "OK"

"Did you feed the animals?""Should I go get the paper?" I go get the mail and the paper and she settles down to read.

I do the dishes, take a shower and get dressed. Twenty minutes for e-mail correspondence. I almost make the deadline. A quick prayer for forgiveness and the phone rings. "Are you free to officiate a wedding in July?" Time for lunch. (Already?)

I make arrangements to meet the bride and groom next week, and then prepare lunch.

"Did you get all your stuff done?" "What time is my ears?" "You need to read this article I found."

We go to the audiologist. We just make our appointment. It is a beautiful day outside. I want to sit in the sun and read a book. "Is Coldwater Creek around here?" "Is it far?" I was planning on meeting a friend for coffee while she napped this afternoon. "I want to see that skirt." She is not napping today. We go shopping.

The women who try to help us are baffled. I am giving her size so she can try on the clothes she has been wanting in the catalog. Isn't that why we came? She only wants to buy me clothes. "Mom,I sit with the dying and their families. It is a special time, but not a party. I wear my clergy clothes. I am not going to wear bright beaded clothing even if it looks good on me". She loves the skirt. She has no money anymore, long ago spent on her mother's care. Maybe she wants me to have it because she cannot. Perhaps it is one more time she is trying to "take care of me."

I finally get it. This is retail therapy. I buy her some new clothes, including the bright beaded skirt. She is so happy. " I have been wanting to come for two weeks. About time. Ever since we got that catalog."

That was two days ago mom. It is time for dinner. I call my friend. "Sorry about missing the coffee, next week?" I start dinner while mom finally takes a nap. As the potatoes cook, I settle down to my computer to catch-up with myself.

It was a good day? Perhaps. My rest day is gone. I never saw my friend. I never cracked a book. I didn't get enough sleep. I am still tired. What happened?

Mom went from tears to smiles. I now have one more memory of my mother to hold onto. We also have some new clothes, including a very loud beaded skirt.
Grant us both sound sleep and rested feet, and enough wisdom to NOT wear that skirt to work.

Amen.