The Zen of Caregiving

Bipolar Dementia Art Chronicles - 33

(continued)

Chapter 2  

I Learn the Ups and Downs of Being a Primary Caregiver

One day early in November my project for the day was to get Dad to change the slacks he’d been wearing for three weeks.  When I got to his room he was glad to see me as usual, but resisted my mission.

“I changed my clothes when I took a shower today,” he said.  “I’m not going to change them again.”

Why would he want to change his clothes in that cold room?  Residents had a combination heater/air-conditioner in their room with a thermostat to control it.  But Dad had forgotten how to use a thermostat or how to find the thermostat.  It was hard to pin down where his knowledge was deficient, but he certainly didn’t use the thermostat.  I plugged in the heater for him knowing he would unplug it later.  Maybe the noise bothered him?

“Dad, you’ve been wearing those slacks for three weeks,” I said.  I took clean slacks and a shirt out of his closet and laid them on the bed.

“You can put those back because I’m not changing.”

His stubbornness made me royally pissed.  “If you want to come to my house for dinner,” I said, “you’ll change your clothes.”

To show him that I meant what I said, I was about to walk out the door.  But then I remembered that I didn’t have a car.  Adrian had dropped me off and was going to pick us up later.

Might as well play gin rummy, I thought.  I cleared off Dad’s card table so we would have some room.

“If I lived at your house,” Dad said, “you could tell me what to do.  But this is my place.”

“You’re right.”

He quickly won two bucks off me and I gradually calmed down.  What difference did it make if he changed his slacks?  Bill told me that men don’t change their clothes every day like women do.  That was his excuse for doing nothing about it when he visited Dad.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 26

(continued)

By the second day Adrian was feeling better and helped with the packing and errands.  There were a lot of “knick-knacks” to sort through, and before we could choose a pack-or-giveaway pile for anything, Elsie told us the long story of each item’s history in her life.  These were actually delightful stories, but time was running out.

Adrenaline kept me jumping as I prodded Elsie to make quicker decisions, checked off items on my to-do list, and backed away from chatty visitors so I could get back to work.  For a special treat, we had Chinese food delivered on my birthday.  The rest of the time, I cooked.

On Sunday Elsie was going to drive herself to church service.  “Don’t be silly,” I said, “I will drive you.”  She was going to give her car, quite beat up after twenty years, to her youngest grandson.  Chuck would take care of that later.

After the service I went to church for the party.  Members told me that though they would miss Elsie, they were very happy that Blixy and I were moving her near us.  The size of the congregation had dwindled over the years as members got old and died.  They were a small but close-knit group, and very fond of Elsie.  Before we left, the Women’s Guild gave her a lovely gift of jewelry.  There were hugs all around.

It was then that I realized how this move would wrench Elsie from her extended “family” in Livingston.  They provided her social life and her support group, making up somewhat for Chuck and his family’s lack of attention.  I had researched and found another Trinity Lutheran Church for Elsie to join in Ithaca, but it had a large congregation and was unlikely to supply the friendship and support she had enjoyed in Livingston.

Blixy had agreed to check on Dad while we were away so I called her to find out how he was doing.

“He’s fine,” she said.  “But he thought I was you.”

“That’s good, I guess.”

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 25

(continued)

Then I found out there was going to be a party for Elsie at church on Sunday and she wanted me to come to that.  Just what I wanted to be doing, I thought—meeting a bunch of strangers and eating cake when I had so little time to prepare for Elsie’s move.

We met Roy, a neighbor who would take care of Elsie’s house until it could be sold.  He would also make sure the church got the stuff for the bazaar.  Roy was a thoughtful guy who had often brought soup to Elsie when she was shut in, helped with odd jobs and errands.  But he liked to talk.  One thing you could not do when you were packing for a move in three days was stand around talking.

We had to decide which furniture Elsie should take.  Blixy thought she should take a practical table, but Elsie didn’t like that one.  Instead she chose a large round coffee table that her husband had made years ago.  It turned out to be very impractical at Alterra, and eventually we discarded it.

As for clothes, I found I had to be right alongside Elsie throughout the process or she would simply linger in indecision.  Or mix up the piles.

“Sort through these socks,” I said.  “Put the pile you want here, and the pile you don’t want there.”

As soon as she sorted things, I’d snap them up, packing what we’d bring and stuffing the rest in the appropriate boxes and bags for the church bazaar and the VA.

In Ithaca we discovered we’d taken some of the bad socks and left some of the good ones.  That was easily solved by shopping for socks.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 24

(continued)

I always loved to move.  Of course it was a lot of backbreaking work, but the prospect of cleaning out the old and starting off fresh in a new place always pushed me into a wonderful manic state where I had the energy to accomplish anything.  Unfortunately, that attitude kept me from understanding other people’s reluctance and fear of moving.  For a woman in her nineties who had lived most of her life in one house, the prospect would be frightening, painful and disorienting to Elsie.

I also liked to do things fast.  Once a decision had been made to move, why wait?  Waiting, in fact is what I was least good at.  I tended to get moody, paranoid and depressed when I had to wait too long for anything.

Thus, on a Friday near the end of September Adrian and I made the four-hour drive to Livingston, New Jersey.  The movers I had hired sight-unseen from the yellow pages were scheduled for the coming Tuesday morning.  That gave us Friday evening and three full days to work.

One thing I was worried about was that too many people would try to help us—Chuck and his sons, perhaps neighbors or friends from Elsie’s church.  I knew from experience that too many people packing and talking and getting in the way (my way) could result in poorly packed boxes, extra confusion, and much distraction.  Well, I needn’t have worried. 

On arrival in Livingston, I was appalled at the clutter and piles of half-sorted memorabilia spread throughout the house.  Elsie was picking through items one by one, setting aside an antique teapot for the upcoming church bazaar, a barely-used handbag and scarf for the Veteran’s Association (VA) bag.

“Wait a minute,” I said.  “Why are you picking out stuff for the church bazaar and the VA?  You need to be choosing what you want to bring to Alterra so I can pack it for you.”

“I want the church to get anything decent for the bazaar,” she said.  “And the rest should go to the VA.  Someone might be able to use it.”

“How will they get it?”

“There’s a pick-up the day after we leave.  They’ll come to the front porch and pick it up there.”

After the pleasantries and a cup of tea, Adrian asked me to make up our bed so he could rest.  He was feeling lousy with a cold virus.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Is Mindfulness a Cure-All?

In my life with bipolar disorder, and my life as a caregiver, I alternately fall in love with mindfulness and despair of it's curing anything:

    When I can be present and listen mindfully to Adrian without reacting defensively, negatively or impatiently, we both come away from the experience feeling more peaceful. 

    When I take the time for a fifteen-minute morning meditation before I begin work, It helps sustain me throughout the day. 

    The more I can stop whatever I'm doing or thinking, take a deep breath, and come back to the present, the better my day goes.

    Yet it takes a certain baseline of composure and well-being for me to allow myself to be mindful.  When I am in the depths of despair and numbing depression, it's hard to be present.  My desire then is only to escape. 

    When I'm in the depths I can't imagine ever feeling peaceful again.  And now, when I'm feeling the abiding peace and joy of being present, I can't imagine not being able to summon up the friendly breath of mindfulness at any time.

The Caregiver Dies First

I just heard of another case where the caregiver died first.  This was a wife who was taking care of her husband who had Alzheimer's.  Tragically, this is all too common.  The stress of caregiving eventually wears out the caregiver, who is physically exhausted, and he or she dies before the loved one being cared for.

I am trying very hard to be more patient, loving and kind in the face of Adrian's disability.  I meditate every morning and try to see the challenges we face as opportunities to practice mindfulness and living in the present moment.

However, this doesn't mean I don't have to set boundaries, maintain my own health, and ask for assistance from family members and friends.  I cannot do this alone.  Ruining my own health and sanity would not help Adrian, either. 

Caregivers, make sure you are getting the help you need and taking care of yourselves!

The Life of a Caregiver: Making Guilt Your Friend

I haven't posted in a while thanks to a trip to Florida (good) and a hospital stay for Adrian (bad).  But I had a great conversation with another caregiver who told me she "always feels guilty."  The point is, no matter how much we do, it will never be enough.  Therefore, guilt is a constant companion.

This morning, for example, I woke up in a good mood in spite of the fact that Adrian had kept me awake with his coughing.  He has a bad cold, so after I got up, I found some vapo-rub and rubbed it on his chest.  Then I got him his meds and some water.  Later he asked if I'd bought eggs, and I said, "Yes, would you like me to make you some for breakfast?" 

Breakfast was fine.  Then I cleaned up the dishes and went out to my studio.  But I made the mistake of leaving the door open.  Adrian came out to talk to me and said he felt terrible.

"What are your symptoms?" I asked.

"I feel like I'm in prison."

And who might the prison guard be, I wondered. 

Well, it went downhill from there as he wanted me to call the doctor's office about his current symptoms, plus make appointments with the ophthalmologist and the optometrist even though he's just been a month ago and they say nothing more can be done for him. 

At this point my good mood was gone and my patience thin.  I guess it sounded in my voice.

"Do you resent me?" Adrian asked.

I didn't say it, but of course I do at times.  Not all the time, but sometimes. Guilt, guilt, and more guilt.

The trick, I think, is to make friends with the guilt, to accept it as a natural companion to the caregiving life. If guilt is my friend, maybe I can take better care of myself and accept the fact that doing so will make me feel guilty.  But taking care of myself will also help me take better care of Adrian, so it's worth a little guilt. 

I take a deep breath . . . come to me, guilt . . . ahhhhhh.

"Radical Acceptance" of Our Imperfect Caregiving

I am far from the perfect caregiver: I lose patience.  I get irritated at small things Adrian does wrong.  I try to "escape" through over-working, over-drinking, over-eating.  And then I come down hard on myself with severe judgment.

That's why I'm reading Radical Acceptance: Embracing Your Life with the Heart of a Buddha by Tara Brach.  I'm trying to learn to accept my imperfections as a wife, a caregiver, an artist, a mother, sister, and friend. Whew, I am lousy at all of them!

I dedicate myself to Adrian's care, denying my own needs and feelings, until I explode with irritation, anger, and resentment.  Not good for either of us.

I am trying a new way:  "There is something wonderfully bold and liberating about saying yes to our entire imperfect and messy life.  With even a glimmer of that possibility, joy rushes in (p. 86, Brach)."

Imagine saying "yes" to who I am as a caregiver, without trying to remake myself into someone different, someone better.  Imagine smiling at my foibles instead of giving myself a harsh reprimand.  

I am smiling now just thinking about it.

Assertive Communication Most Important in Caregiving

"You'll tell me if I become a pain in the ass, right?"  That's what Adrian said to me this morning after coming into my studio to tell me he felt so sleepy he didn't know what to do with himself.

"Go to bed and take a nap," I suggested.  "And yes, I'll try to tell you BEFORE I become aggravated."

The problem is, I usually don't communicate very assertively with Adrian.  I wait until my irritation at being interrupted is so strong that I can't stand it, and then I lash out at him.  This is NOT effective.

Of course, the first step in knowing how to communicate what I'm feeling is TO KNOW WHAT I'M FEELING.  That's where the meditative pause comes into play.  I need to stop, take a breath or two, and observe what's going on. 

Assertive communication is about asking directly for what you want and need.  Otherwise you're asking the other person to read your mind. 

How on earth is Adrian supposed to know when it's OK to come into my art studio to ask for something, and when it's not?  

I wrote a book on assertiveness many years ago, precisely because I needed to learn how to use it.  Guess I need to reread that book. 

As a caregiver, how assertively do you communicate with your loved one?

Taking Care of the Caregiver: Setting Boundaries

Yesterday Adrian came into my studio and sat down to talk to me while I was composing my abstract art blog.  Instead of telling him this wasn't a good time, I ended up listing everything he had done wrong lately and then saying in a nasty tone of voice, "You may be taking a break, but I am in the middle of work.  Leave my studio."

Why does all this anger and resentment come flowing out of me?  True, when I went to use my studio sink to clean my paint brushes, it was covered in spattered mud, thanks to Adrian using it.  True, when I went to pack some prints for shipment, they were covered in dog hair, thanks to Adrian not cleaning the car thoroughly after he has the dog in it.  And true, I really just want to work in the mornings, not be interrupted by him coming in and sitting down and waiting for me to entertain him!

Wow, that is a list of resentments, isn't it?

Adrian is at the beginning stage of Alzheimer's, and the medication he is taking really helps him to be quite functional.  Yet he struggles with many things he used to handle with ease, and has become much more dependent on me.

I know I need to set boundaries and stick with them, but my guilt keeps me from doing it consistently.  I do close my studio door for short periods of time, and have told him not to interrupt me unless it's an emergency.  The first day we put that plan into practice, he came barging in 20 minutes after I closed the door.  "I came in because I have an emergency," he said.

He had run the car into the ditch alongside our neighbor's driveway.  I had to call the tow truck and work with the driver to get it out, while Adrian stood nearby with Roxy, the black lab.  "Sir, would you and your friend move back?" said the driver.

Roxy is our neighbor's dog, but Adrian takes him for free runs in the woods most every day.  Sometimes Adrian gets lost, but that's another story.

Boundaries:  I know I need to keep my studio door closed for at least a couple of hours every morning so that I can do what I need to do each day:  paint, draw, meditate, write my art blog or this caregiving blog.

If I don't set the boundaries, I'll probably continue to suppress a resentment and rage which blows up periodically.  Would that be better?