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?

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.

Lent-en Money

It is amazing who comes into our lives and what we learn from them unexpectedly.  Such is the experience I am processing in prayer tonight.

I have a friend who is going through some really horrific financial times. Like most working folks around here, the dip in the economy has impacted her family significantly. Unlike most working folks, she has no family or friends really to help her through.  After years of trying to live on too small a salary, she has lost her savings, her home, even her furnishings and jewelry in an effort to stay afloat.  For many reasons, some poor choices, some bad luck, but mostly health related, my friend has descended into enormous debt.  Lately,  things have gotten bleak indeed.  She daily must make difficult choices between basic human needs, like food or medicine, electricity or gasoline to get to work. I want to support her, and I try as I can, but her problems are so large, and my own reserves so tenuous, even depleted at times. It is obvious that I cannot save her from this and it makes me enormously sad.

Oddly, this friend has been one of the most generous of her time for my sorrows.  I share my lunch with her on occasion and we laugh and find joy in spite of the pain around us.  She has been a gift to my heart and a devoted visitor for mom. She has also been a wise theologian, although I don't know if she would like me saying such a thing.  She has given me a Lenten lesson I will never forget.  If Lent is about giving up something in order to help those less fortunate than ourselves, she has taught me by example and I am humbled.

In the last year, as mom's illness has raised my bills and reduced my income, I have also felt the bite of economic change.  She is more than enough to keep me cautious.  Two of her medications are not covered by her insurance and the alternatives they allow do not help her.  I have wasted hours, days, trying to get her something to alleviate her pain to no avail.  In my frustration, I keep on dropping another $40 for three pills at a time that give her, and consequently me, ease to sleep for another three nights.  I regularly spend twice as much on my grocery bill than I used to just to accommodate her special diet. I pay to get her hair washed and styled once a week, and our heat bill doubled as we no longer turn down the heat (the house is never empty anymore).  We keep finding open windows and the heat cranking, or last summer the air conditioner on and the door wide open, all new expensive behaviors since dementia.

I brought mom in when her own money ran out. Her carefully squirreled away funds fell to con artists,  some health issues, bad luck, poor choices and all the same reasons my friend suffers. Mom was deep in debt, sick and destitute. I remember all that we did, my husband and I, as a family, in our efforts to get her settled and safe. It was difficult and yes full of sacrifices all round, including my own. There are times I resent giving up the things I wanted, worked for, to do that.  I know the impact on my marriage has been tough to take for both of us.  Mom is expensive in every sense of the word. It sometimes feels as if it will never end, and if it doesn't soon, I will be joining the "bad choices" financial club.   There is no easy way to fix any of it and, once again, it is all so sad sometimes.

Tonight, as I was helping mom to bed she began talking about my friend and how I should leave her because it is too sad. "This has to stop!" she insisted. Mom won't pray for her, she told me, because my friend isn't doing anything in her eyes to fix it. I was tired and instead of  remembering it was just mom's disease being so mean, I tried to explain to mom how our friend was struggling and how really difficult it was for her right now.  Mom surprised me with her vehement insistence that "she isn't moving in with us if she becomes homeless!"  Apart from mom being correct about that unfortunate truth, I was stunned as I looked at the parallels in their situations.  Where is her compassion?  Did that rot away with her numbers? Mom has been going to Lenten activities at her church the whole season. Did it mean nothing? 

The biggest difference, my mom had someplace to go when it all ran out.  Her paycheck doesn't cover her expenses either.  If I continue to make these poor fiscal choices, will I be any better off? That mom's disease, or her fear, has robbed her of her impulse to pray for the needy is the saddest part of all.

So dear Grimelda, source of love, light , redemption and solace,
Ease our pain. Help us to keep whole as we continue on this road through sadness.  Grant us endurance, laughter and hugs.  Help us to keep our soft hearts. Give me the strength  not to give too much away in my need to care for others.  Let me learn from those before me, ancient and otherwise, and make different compassionate mistakes. 
May we still rejoice in birdsong and smiles, in sunny days with puffy clouds and the new green of ressurecting life.

And help us to remember, all of us deserve prayer, especially those who make mistakes.

Amen
Amen
And,
Amen