The Zen of Caregiving

Bipolar Dementia Art Chronicles - 18

(continued)

Dad’s doctor gave Bill some Valium for Dad and we gave him one before the plane trip.  Laura and Jim came to the airport with us in order to give extra support in case we needed it to get Dad on the plane.  Once we managed that, we thought the rest would be easy by comparison.

On the plane Bill and I had Dad sit between us so that he would feel safe.  It wasn’t that long a flight, but it took forever.

Every few minutes Dad would ask, “Where are we going?”

“It was like taking a trip with a little kid,” Bill said later.  He was exasperated by Dad’s continual and repetitive questions.

The repetitive questions shouldn’t have been a surprise, given Dad’s severe short-term memory loss.  In the months ahead I would get used to answering them patiently over and over again.

If you’ve seen the film Memento, you know what I mean.  Like the main character in the movie, Dad would write notes to himself to help him remember things.  That’s why my letter worked so well to convince him to come to Ithaca—he could read it over and over and over.  In Melbourne, we stuck that letter in front of his face every time he forgot what was going on.

Curiously, as the plane left the south and started flying over more northern scenery, Dad stopped talking about Florida and started talking about Newark, New Jersey.  This is where he had grown up, worked all his life, and raised his own family early on.  The plane ride seemed to zap him into an earlier time frame in his life.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

When is Home Care the Best Option for Your Loved One? by Alexis Bonari

(Alexis Bonari is our guest blogger today--see her bio below.)

The decision to put a beloved spouse or parent in a nursing care facility is often one steeped in guilt and indecision. Everyone has heard the stories of elder abuse and neglect uncovered perpetrated by some nursing homes. Nobody wants to subject their loved one to loneliness or mistreatment. 

Arguments for a nursing care facility.

On the flip side, caring for a family member with a serious disorder like Alzheimer's or Parkinson's can be more than the caregiver is capable of handling.  This point is often reached when the caregiver simply does not possess enough medical training to attend to their needs or is too frail to provide the proper level of care.  Some caregivers simply can't leave their job or other family obligations to care for an aging parent full-time.

When relatives and friends can no longer care for the individual's needs, the most logical course of action is to enlist the help of a care facility.  Inadequate care can lead to a severely diminished standard of living. 

Planning ahead for home care.

If home care is the most desirable option, planning ahead can make all the difference.  Taking measures like adding a long term care rider onto an existing life insurance policy, and discussing desired care strategies before illness sets in makes the decision-making process less painful for everyone. 

Aid for caregivers.

As the cost of nursing home care climbs, respite care and nursing help within the home are becoming more popular.  A stressed caregiver can make use of these services so that they can emotionally re-group.

Essentially, the questions of when and whether to use a nursing care facility must be answered on a case-by-case basis.  The best decision is the one that allows the loved one to have the best care, the most autonomy, and is closest to their stated desires.  On the same note, family members should not be vilified for suggesting a move to an assisted living home or nursing care facility. 

Bio: Alexis Bonari is a freelance writer and blog junkie. She is currently a resident blogger at onlinedegrees.org, researching various degree programs. In her spare time, she enjoys square-foot gardening, swimming, and avoiding her laptop.

Bipolar Dementia Art Chronicles - 17

(continued)

One thing that upset Dad was the idea that Laura and Jim owned his house.  He forgot they had bought it from him and Mom years ago.

 

“This is my house,” he said.  “It always has been.  Mom and I would never sell it.”

 

“Dad,” I said, “Laura and Jim bought the house to help you and Mom out financially, to give you some extra cash.”  This is exactly what they had done, and Mom and Dad had been grateful at the time.

 

“I think you’re trying to pull a fast one on me,” he insisted.

 

“I can show you the deed,” said Laura.

 

The fact that Jim was meeting with realtors to get the house on the market didn’t help.  All the activity, the strangers, us pouring over Dad’s possessions, was upsetting him.  Did we expect that he would simply sit back and say, “have at it folks,” because our intentions were honorable? 

 

We were invading his autonomous life, tearing him away from everything that was familiar.  During the three days we were in Melbourne, Dad was alternately passive and belligerent.  “Do I really have to do this?” he would almost plead.  “I’d really rather live here on my own.”

 

“It will be OK,” we’d reassure him.  “Lynne and Bill are going to help you get settled in the new place.”

 

“But what if I don’t like it?”

 

“We’re sure you’re going to like it, Dad, once you get used to it.”

 

We weren’t so sure ourselves, but what else could we say?

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 16

(continued)

At the end of August, Bill and I flew together from Syracuse to Florida so that we could fly back together with Dad and get him settled in at Alterra.  Laura and her husband Jim flew in from Kansas City and met us at Dad’s. 

 

Our tasks were pretty straightforward—pack Dad’s clothes and personal items, buy him new underwear and socks, and go through the house to see what was worth salvaging.  There wouldn’t be much.

 

In their later years, Mom and Dad had tried to give us as many of their prized possessions as possible—a favorite bread knife to Laura, a cut glass vase to me.  When we’d look through the albums of old photos, they’d say, “take what you want.”  After Mom died, Dad asked us to take her jewelry and the rest of her knick-knack collection.  So there wasn’t anything much left that any of us wanted. 

 

Maybe if Mary were there she would have felt differently.  Mary is more sentimental than Laura and I. 

 

One thing we expected to do was to take Dad to his bar so he could say good-bye to his friends, but he didn’t want to go.  In a few hours of our arrival, he could tell his life was being overhauled and he became more and more distraught as we buzzed busily around him. 

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 15

(continued)

On August 17, I called my father. “Hi Dad,” I said, “this is Lynne.”

 

“I got a letter today I’m reading,” he said, “from Lynne.”

 

“I sent the letter.  This is Lynne.”

 

“Oh, you sent it.  I read it twice now, I guess, and if I read it again that will make three times.”

 

“What do you think?”

 

“So you found me a boarding house and all?”

 

“That’s right.”

 

“What would I do with all my furniture and stuff here?  I’d have to sell it to see what I could get for it.”

 

“We will help you with that.  Laura and Bill and I.”

 

“I hate to leave such a nice place as Florida.”

 

“I know it’s hard to leave, but I think it will be for the best.”

 

“When were you thinking of doing this?”

“The end of this month.”

 

“What day is it?”

 

“Today is the 17^th.  We’re planning to come the 25^th, in about a week.”

 

“Who all is coming down?”

 

“Me and Bill and Laura.”

 

“Do you really think I’ll like it there?”

 

“Yes, I do.  It will be hard at first, I know, to make a move, but once you get here I think you’ll like it.”

 

“Does everyone agree this is for the best?”

 

“Yes, Dad, the whole family agrees.”

 

“That’s the trouble with getting old, you youngsters like to tell us what to do.”

 

“I know, Dad.”

 

“Well, I guess it would be the best thing for me to do, then.”

 

“I agree, Dad.”

 

“Well, OK then.  I’m looking forward to seeing you all.”

 

“So are we, Dad.  I love you.”

 

“I love you, too.”

By writing that letter, I had successfully engineered Dad’s agreement.  The plan was a “go.”  I signed the lease at Alterra and Blixy and I went shopping for furniture, bedding and towels.  Dad didn’t own anything that was worth shipping up from Florida.  It was cheaper to buy new.

 

By the time the furniture was delivered and we finished setting everything up, the apartment looked homey and inviting.  I hung a couple of paintings, too, since Dad was used to looking at my art on his walls.  But most important, we put up some photos of Mom.  Dad had never stopped talking about Mom after she died.  “Your mother was a wonderful woman,” he always told us.  I wanted her presence to be alive for him in his new digs.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 14

(continued)

I put in an application for Dad at Alterra, but first we had to convince him to move there. Whenever any of us talked to him on the phone about moving, he always ended up saying he wanted to stay where he was.  Yet there were more and more signs that it wasn’t safe for him to live alone.  Some guy he met at the bar had convinced Dad to write checks to him and cash them.  Laura had to close out Dad’s bank account. 

 

One day he forgot to turn off the water in the bathroom and the sink overflowed, flooding the house.  Jackie told us stories of burnt pots that had to be thrown out because Dad didn’t pay attention when he used the stove.  We were lucky there hadn’t been a fire.

 

Finally, I wrote him a letter:

 

August 10, 2000

 

Dear Dad,

 

Bill and I would like to come to Melbourne and help you get packed to move to Ithaca.  Laura will meet us there too.

 

We’ve found a great spot for you where you will have your own apartment in a place that’s like a boarding house.  Meals are served in a main dining-room, cleaning and laundry are done for you once a week.  Adrian and I live ten minutes from this place, so you can come over for dinner at my house any time you like.  I’m retired now, so I’m also available to drive you places you need to go.  Adrian says he knows a bar with a pool table he wants to take you to when you come live near us.

 

Blixy and her two children, Mike (5) and Rachel (1), live fifteen minutes away, so you’ll see a lot more of them, too.  The other good thing is that your sons Bob and Bill and some of their children live near enough to drive here in a couple of hours instead of having to take a plane to visit you.

 

Dad, we picked this boarding house for you very carefully.  There’s a pool table there and people who like to play.  You’ll have neighbors who enjoy playing poker and gin rummy, also.  And we’ll stock your refrigerator with your favorite beer.

 

You don’t have to worry about your house in Melbourne because Jim and Laura own it now.  They bought it from you and Mom a number of years ago to give you extra spending money.  So when you move out, they’ll take care of putting it up for sale and packing things up.

 

Dad, all of your children and grandchildren love you and want you to make this move to Ithaca.  We worry about you and want you to be closer to family.  This is what Mom would want for you too, I’m sure.

 

Bill and Laura and I want to come down the end of this month (August) to help you pack and bring you to Ithaca.

 

Love, Lynne

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 13

(continued)

When Elsie got home and talked to her doctor about her options, he said she should go to Alterra.  But she wanted her son Chuck to come up with her and see both places before making up her mind.  He said he’d do that just as soon as he retired from his job at the end of October.

 

One of the things that caught my attention at Alterra was the pool table in the game room.  Wouldn’t that be great for Dad? I thought.  So I asked the management a few more questions about Dad and discovered he’d be able to keep beer in his apartment and even bring it to meals if he wanted to.  Dad had been a beer-drinker all his life and we couldn’t imagine taking that pleasure away from him at this point.

 

I’m not sure exactly how it came about that Dad should come to live at Alterra near me.  After all, there was a facility in Kansas City near Laura as well.  But she worked full time.  So did my sister Mary.  Don was retired, but he was the hedonist in the family and traveled all the time.  Bob was retired also, but he’d already had a heart attack several years ago after a visit to our parents.  We didn’t want to put any more pressure on him.  That left my brother Bill in Albany and me in Ithaca.  When I asked Bill about the possibility of Dad moving near one of us, he said Dad should come to Ithaca.  “I’m not a caregiver,” he said.

 

But no one forced me to bring Dad and Elsie to Ithaca.  I put the wheels in motion myself, eager to set about yet again to “save” someone—two people, in this case.  It was a heroic gesture I attempted every now and again in my life—often with disappointing results—but at the beginning of these adventures I was always filled with abundant optimism and energy. 

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 12

(continued)

 

When I talked to Elsie at the end of July, she said her doctor told her that she absolutely needed to move to an assisted living facility.  There was no way she could continue to live on her own in that old two-story house. After talking it over, Blixy and I figured that if we didn’t do something, no one else would, so I did some research and found two places in Ithaca that might work.  One weekend Blixy and I drove to New Jersey with the kids and brought Elsie back with us to look at them.

 

The first place, Alterra, was a national chain which included separate housing for people with advanced dementia.  The brand new Ithaca facility consisted of two one-story buildings with a connecting walkway and lovely grounds on a hill overlooking Cayuga Lake.  Each of the forty residents at the assisted living facility had a very small studio or one-bedroom apartment.  There were no full-size kitchens, but simply an alcove with a sink and cupboards and a tiny refrigerator.  All meals were served in the main dining room, so there was no need for residents to cook.

 

When Elsie saw the Alterra set-up, she didn’t like it.  She wanted more space of her own and a real kitchen to cook in if she felt like it.  But the advantage of Alterra was its size—only forty residents, all on one floor in a circular pattern so that no matter which way you walked, you’d eventually get where you wanted to go.  Alterra also gave off a lovely aura of cleanliness and light.  The halls were wide and well lit, with handrails on both sides.  The buildings were new, fresh, and comfortingly bright.

 

Our other choice, Longview, was a local institution on a large hill at the other end of town.  Its halls were not as wide and bright or the furnishings as lovely as Alterra’s.  Longview was three stories high with 120 residents, and offered larger apartments with full kitchens and walk-out patios or decks.  Elsie loved those apartments, but we worried about her being able to find her way around. 

 

At Alterra, Elsie would be encouraged to come to meals, participate in activities, and go on outings.  At Longview there were many more activities and trips available, but it would be up to the resident to sign up for them and to show up on time.  Elsie was probably capable of managing her life at Longview, but Blixy and I worried that she’d end up staying in her room reading rather than making an active effort to get involved.

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 11

(continued)

My studio and office were finally finished, and I built fifteen canvasses so I could start painting again.  I wondered how my painting would change now that I was in a new environment. 

 

My work is always influenced by the places I live—what my eyes see in the landscape as well as what my psyche feels in the atmosphere.  In Tallahassee, Florida, my paintings were spare and muted.  One series was painted in dark browns and blacks, another in the palest shades of off-white and lavender.  In Morehead, my colors went bright and my edges crisp.  One painting in particular, Kentucky Spring, reflected the lush spring growth around me at that time.

 

It was good to be working again, but the first painting I did felt tight and too controlled. I named it Ithaca One.  I loosened up on the next one, playfully combining shapes, colors, and curlicue lines on a rusty-red background.  I named it Ithaca Two and eventually sold it to a woman in California.

      Ithaca One

(to be continued)

(from The Bipolar Dementia Art Chronicles)

Bipolar Dementia Art Chronicles - 10

(continued)

Laura suggested we gather up the floozy’s belongings.  The woman didn’t seem to be around, but her stuff was in the spare bedroom.  That room had the bath with the walk-in shower, and Laura thought Dad might have been avoiding taking a shower because he thought someone else was using that room. 

 

Laura was always thinking about all the things that might make life better for Dad.  She thought we were worried and anxious over him now that we were leaving.  Maybe, but I thought my anxieties were less altruistic – more about driving from the Syracuse airport to Ithaca, going to our neighbors for dinner, or hanging the art show I was going to have the following month.

 

We did worry about Dad.  We worried about him walking to the bar in the heat, especially after he’d had a few beers.  The year before he still had his car, but then we worried about him having an accident.  On one visit when he had been driving Adrian and me around, he pulled out right into an oncoming van.  Luckily the van driver was quick and avoided us.  Fortunately one day Dad “lost” the car and everyone conspired to keep it lost so that he wouldn’t drive it any more. 

 

Laura and I packed up the floozy’s belongings, and Laura brought them to a house

across the street where she was supposedly living with her brother.  Evidently the woman was trying to “go straight” and there were no hard feelings about returning her things.

 

I played gin rummy with Dad while Laura washed the towels and bedding and straightened our rooms out. We would have to leave in an hour.

 

Mom’s presence was still in the house.  Maybe she was watching out for Dad.

(to be continued)

(from The Bipolar Dementia Art Chronicles)