Learning to Live …

Last week I heard from several of my blogging friends who asked me how I’m doing and requesting  that I write an update.  How wonderful to hear from them.

It’s been more than seven months since Bo’s death,  and  I’ve been away from this blog for almost five of them.  I promised to continue writing, to do more research and to share more of the  lessons I learned throughout Bo’s illness,  but I realize that I needed to be away for a while.  The nine years of his illness had taken its toll on me.

“How are you doing?” friends ask with concern.

The answer is that I’m all right.  I miss Bo, but I believe it’s true that during a prolonged illness like Alzheimer’s you grieve day by day, year by year.  Watching him disappear was heartbreaking.  Some days I felt lost.  It’s odd, but now when I see a couple walking down the street holding hands,  dancing,  shopping, walking their dog,   the hole in my heart feels even bigger and I miss Bo so much, but I miss the man  he was BEFORE his illness, as if those ten years in between hadn’t happened.  I miss the man I knew who was  tall and strong, healthy, full of life and laughter, the man who protected me and helped me, who was so proud of me.  That’s who I want back.

But now I must move on –I have a new life that I’m learning to live.

I’ve always been a traveler and missed it tremendously, so for six months I traveled.  Some trips took me to visit dear friends and family who had come to visit me during Bo’s illness when I couldn’t visit them.   When I drove to my destinations,  Emma dog went along.  Other times I flew to  places I wanted to enjoy.  And now every day I read travel catalogs, planning for the future. I already have a couple of trips planned.

Emma on a Car Trip

Now I’m home for the summer.  Many things need to be done here.  During the past ten years,  only  necessary repairs were done:  plumbing leaks, a new roof,  landscaping,  a new garage door.  Each decision I made was stressful, and everything  agitated Bo because he didn’t understand what was happening.  Now, it’s time to finish it all.

Robert has been here for weeks,  painting,  stripping wallpaper, repairing cracks, staining the floor, updating my bathroom, and now beginning to upgrade the kitchen and laundry room. (You may remember Robert from a blog I wrote: Locked Out.) The house is upside down.  Turns out  that I last decorated the living room and dining room 29 years ago.  Yikes!  So that project began too and it’s exciting. Guess I’ll stay here for a while.

And while this is all going on,  I’ve had NancyCamp for the children and Adult NancyCamp for my friends … trips to museums, historic homes and gardens,  a boat trip.

I’ve also returned to ballroom dancing.  It had been 10 years since I enjoyed  my favorite lifetime hobby. I can’t explain how great I feel after dancing –how joyful it is.    As I explained to a friend last week,  I go to bed feeling wonderful , and the next morning I awaken still feeling wonderful!

At a dance competition last weekend

And so, my life is busy and filled with many enjoyable activities.  Jon and his family continue to live with me. My friends —  all of my wonderful friends — were here with me while Bo was ill,  and they continue to be here for me.  How lucky I am!

It’s All Right

Mother

My mother had her feet solidly on the ground.  She wasn’t a dreamer, didn’t believe in  fortune tellers or the supernatural, but she did have occasional intuitions that were spot on.  One of those intuitions was about my future.

As I wrote in my blog, ” Telling Mother” , she was very upset about Bo’s illness and my role as his caregiver.  How would I do it alone?  What would I do when he was gone?   She worried and fretted.  Her heart broke.

But  a couple of years after I told her about Bo,  she greeted me with a new smile, and as we sat down in her living room,  I knew she was eager to tell me something.

“I have a feeling,” she announced.  “It came to me last night. Everything is going to be all right for you.  You will be okay. I’m sure of it.”

I could see the relief in her face, feel her relax.  I never knew just what happened to make her feel this way,  but she was right. A year later, Mother was gone and I was alone with Bo.  I just couldn’t care for him  by myself anymore, so I put him into a memory care facility — the hardest thing I’ve ever done —  but after one terrible week, I brought him back home. It had been the wrong decision, for  him and for me.

And when he came home,  my friends told me I needed to get help. I was exhausted,  looked terrible, wasn’t sleeping,  couldn’t leave the house.  It was then that I found Jon. I interviewed him,  and we decided he would begin taking care of Bo the next week.  But that changed. That same day I hurt my knee  and couldn’t put any weight on it, so I called Jon. Could he start immediately?

He did,  the next morning.  I remember asking him, “What kinds of things do you do?  I’ve never had help like this before.”

“Anything that you need,” was his answer.

He fixed my breakfast and did a load of laundry before getting Boris up, and that was the beginning of our lives together.  A month later his home burned and I invited him to bring  his wife and two children here to live with me.  That decision worked out so well that we still live together as a family.

And, as Mother predicted, what had seemed impossibly difficult ended up all right.   I found help and had support throughout the rest of Bo’s illness. Everything worked out and I’m all right.

________________

The story of finding Jon:  “Big Changes at Home.”

The story of  taking Bo to the memory facility: Assisted Living Ended 

Telling Mother

Mother

After my father died at 95, Mother was lost. She became ill and although she improved, couldn’t live alone, so her neighbors helped, and Bo and I drove the 185 miles between our home and hers weekly, passing one another on the Pennsylvania Turnpike. He spent weekdays with her while I worked; I went on weekends.  She then moved into a senior residence but we still traveled and after three years of this distance care, Mother decided to move from her hometown of 90 years to be near me.

At the same time that she moved here,  Bo was diagnosed with Alzheimer’s.  Although I had known something was different,  I didn’t expect it.   I was so busy with  Mother’s move that I was shocked when, as I walked into our bedroom one day,  Bo simply said to me, “I have Alzheimer’s.  Poor Nancy, you’ll have a couple of bad years with your mother and me.”

I asked myself why I hadn’t seen it coming.  How was it possible that Bo and gone to the doctor, had tests, and gotten this diagnosis without me knowing?  Later,  I looked back and realized that he hadn’t  helped me with Mother’s move.  Why hadn’t I noticed that?

The answer  is that he had done so much for my parents over the years — always there for them,  always there for me — that when I had the chance to do most of Mother’s move by myself, I thought I was giving him a break. Instead,  he actually wouldn’t have been able to do it because of his own emotional  state.

I decided I couldn’t tell Mother about Bo’s condition because she would be so upset;  she would feel like an extra burden to me.  I’m an only child with no other relatives who could help  and  my future would frighten her so.   I waited three years, three difficult years of watching  both of them while hiding Bo’s slowly disintegrating mind from Mother. When we were with her, I  anticipated his every word, monitored every move, covered for him if he said something that seemed strange. As long as I could hide it from her,  she wouldn’t be worried.

But eventually it was too hard,  too exhausting to keep the secret.  I was stressed when I was away from Bo while spending time with Mother, and when I was at home, I worried about her. So I  told her. We had lunch together and after several tries, I got up the nerve to say the words: “Boris has Alzheimer’s.”

And from then on, she was almost frantic with worry — about me,  my present,  my future,  about Boris and our life.  Mother had always been a worrier, but this was the worst possible scenario for her and I knew it broke her heart.

My friends helped me,  visiting Mother when they could,  having tea in her little apartment, taking her flowers.  My friend Karen even helped her plan a surprise birthday party for me.  She loved these times, loved my friends,  and to this day, although no one told me this,  I am sure that she asked each one of them  to take care of me when she was gone.  She died three years ago, and although  she couldn’t be the caregiver she wanted to be,  she looked after me in her own way.

Mother and Bo

How to Help to an Alzheimer’s Patient

Today I read an article* that stopped my heart.  It was about a seminar for caregivers of dementia patients. The topic:  How brain damage from dementia affects behavior and how caregivers should respond to their patients.

My first impulse was to read it; my second was hesitation.  What if I find out a lot of things I should have done but didn’t do?  What if I made some bad mistakes with Bo? What if I have more regrets?  Do I want to know?

Yes. Yes,  I do because there are so many other people still  taking care of their loved ones with Alzheimer’s or some form of dementia.   Maybe I can  pass  important information to them through this blog.

I actually put the article down and didn’t read beyond the headline for a couple of hours, but when I picked it up again,  it sent a bolt through me. It answered questions about perception that Jon and I had for several years:  Why did Bo try to step over the flowers in the carpet or step up from the carpet to the wooden floor?  Why did he pull back instead of following when Jon stood in front and held his hands?  Why was he so afraid on the stairs?  Why didn’t he see the dog sitting beside him?

Oh, how I wish I had known that …

“….the visual field [of the dementia patient] narrows considerably, especially when they are frightened. A 20-year-old ‘s peripheral vision can detect his moving fingers if he stretches his hands straight out to the side, but someone with mild-stage dementia can see only between two arms thrust straight forward. That means it’s easy for him to think someone is sneaking up on him. If you stand right in front of him, you block his full visual field, which can feel threatening.  In other words, it’s best to speak from a distance and approach from the side.”

Looking back,  I ask myself if I did this, not  realizing what I was doing.  I know that I usually talked to Bo as I approached.  Or I often touched his back or arms with affection and maybe this helped.  But I remember the day when Jon, Bo and I were sitting at the kitchen table and the dog came to sit by Bo’s left leg.  “Look at the dog,” I said.  “She loves you. She wants you to pet her.” But Bo didn’t even see her.  He didn’t turn his head.  He looked ahead and sort of mumbled.  Jon also told him to look, but he didn’t seem to understand.  Then I  turned his chair so he was facing Emma.  Now he noticed her.  Jon and I talked about this later.  Why hadn’t Bo turned his head to see Emma?

And then the article hit home  as I continued reading:

“In later stages of the disease, the brain begins using visual messaging from only one eye, throwing depth perception way off and increasing the risk of falling.”

This was the answer.  This was what we didn’t understand.  We thought it had something to do with perception but didn’t know what.

Bo would often balk and refuse to move forward.  Now I realize that as Jon or Cynthia held his hands in front of him, they blocked his field of vision, and as the article said,   he was afraid of falling.  This was particularly true on the stairs.  But when Jon held his hand from the side, Bo moved forward.

August 13, 2015

I’m very glad that I can pass this information on.  I will continue to look for other answers. There’s so much we don’t understand, so much we need to know.

(“How to Talk to Those with Alzheimer’s” by Stacey Burling, The Philadelphia Inquirer, Sunday, January 31, 2015, (Section G1)

 

 

 

Arizona Snow

A long time ago I told Jon that when Bo left me, I would travel … he and his family could live on at the house and take care of Emma dog and Charlie cat. And so, I’m in Arizona near Tucson visiting our closest friends.  Blizzard Joshua arrived the day my flight home was scheduled, so American Airlines asked me to stay an extra four days.  Not bad.

I can’t believe that I managed to be away for one of the biggest snowstorms on record.  I love snow.  I love sitting inside the house watching it snow, a fire in the fireplace, a cup of hot chocolate and some great music or a good movie.  Snow days make me want to bake.  Even sitting here in Tucson watching the storm on the weather channel made me want to bake cookies.  And make soup and roast vegetables, which I did.  We had a snow dinner in the desert.

Nine years ago  Bo and I visited here together.  He had been diagnosed with Alzheimer’s about four months earlier, so traveling was already beginning to be more of a chore than a joy for him.   I remember one day when he went for a walk by himself.  The development where our friends live has similar houses and winding streets — no straight lines. Bo was gone quite a long time and I began to worry. Then the phone rang.  He had gotten lost, but eventually found a Walgreen’s and called for someone to pick him up.

When he arrived home he was visibly upset — upset with himself, saying he never got lost anywhere, upset with his condition, realizing that it was advancing.  I recall him going straight into our bedroom and lying on the bed for hours; wouldn’t talk about what happened, even when I said anyone could get lost here, it could have been me.  I can still feel his sadness and frustration.

And from then on, travel gradually became more and more difficult for him.  It wasn’t just the travel itself, it was thinking about it, knowing he needed to pack, to organize his things.  I think it loomed large for him.  He became depressed.  I recall one evening going into our bedroom where he was trying to put things together for his suitcase. He was just standing there, head down.

He looked up at me, so sad. “Do we have to go?”

“No, it’s OK, Boris.   We don’t have to go. ” He was visibly relieved, his mood changed immediately and he relaxed.

Then I thought if I did the packing it would be easier for him.  In fact,  when we visited our sister-in-law in Boston, I packed without him knowing about it, put everything into the car at night, and when we got up the next morning, I said we were going for a ride.  That worked better, but then when we were at our destination, he got lost inside the building a couple of times going from our room to Rose’s apartment.  Again he was upset and frustrated, and I knew I couldn’t do this to him any more; I knew we wouldn’t go anywhere again.

When I look back now,  I can see that even before Bo was diagnosed, perhaps before he had any inkling that something was wrong,  he had begun to demur when I talked about travel.  He would say to me, “You go without me.  You have a better time.”

So now my time has come to travel alone again.  I have a new plan:  I won’t say no to any good ideas.  First, there are family members to visit, then my hometown, and then …. who knows?  Emma dog’s ready for the long car rides.  And I’ve already bought a ticket to Paris in May.

(My original blog about Bo and travel was written in 2010:  The Train to Boston.)

The Journey Moves on ….

Almost three weeks ago Bo left us,  and since then I’ve been thinking about this blog and  whether to continue it.  I’ve decided to  — for a while, at least — because there are things left to say.  Thoughts to share.

I’ve made this decision for several reasons.  First,  the kind words of some of my readers who have told me that they, too, are caregivers and I have helped them in some way;  and second, others who aren’t caregivers but who have told me that  they learned about Alzheimer’s from our story.

It’s such a cruel disease.  We know the outcome, but the journey there is unpredictable and  exhausting, and even though the Alzheimer’s Association  and websites like Mayo Clinic describe the “stages” of the disease,  we still don’t really know what to expect.  Each person’s regression is different.  The average duration is sometimes listed as eight years, yet each person varies.  There are those who decline rapidly, but others, like Bo, whose decline was gradual and slow for at least nine years.  What we don’t know is how long the patient has the disease before it becomes evident.

I used to go back to the “stages” chart to see where I thought Bo was.  I know there were  times when I was in denial.  Maybe what happened was just a fluke.  Maybe he’d be OK tomorrow.  You see,  the really odd thing about the disease is that it’s not consistent.  He would do one thing that was a sign of the disease yet say and do others that were perfectly normal.  Such a reasonable and sensible man: how could he possibly intentionally pour a glass of water over my computer keyboard? or try to drink the water from the flowers on the kitchen table?

In truth, he slept most of those nine years.  There was nothing else to do — hobbies, interests, household tasks, reading, television all gradually disappeared until only boredom  remained.  This ennui was deadening.  The purposeless life.

But there are stories left to tell,  so I will move forward with Alzheimerswife.com from time to time with a new post.  Thank you, all, for your sympathy and support.

Nancy

Bo’s Final Gift

This morning Boris left me.  It was a peaceful death.  Jon and I had just been with him, then Jon returned to check on him about ten minutes later and Bo was gone.  It was his last gift to me.  I didn’t have to make that terrible, final decision for him. So many times I have written about his slow decline into Alzheimer’s and the gifts that he gave to me:  he was never belligerent or violent, he never wandered, he never lost his kind sense of humor.  He did it all with grace.

This is hard on Jon because he was so close to Bo;  I think he  loved him like a father.  Bo was in such wonderful hands — cared for  by a gentle, kind man.  What would we have done these past 2 1/2 years without him?  Jon has made it possible for me to have a life.   His wife and children have given me a family, filling  our house with life and cheer.  They will continue to live with me, but our house will never be the same.

I’ve been preparing for this day for so long, and yet my life is suddenly changed.   Bo has been my sole purpose for so many years … this will be difficult.

Thank you to everyone for your kind messages and prayers.

Nancy

The Hospital Bed

Several days ago I wrote about Bo’s changes, how his sad decline is so noticeable,  but today I write of an even greater change.  Yesterday Jon  moved him into a hospital bed where we can care for him more easily. Now, when I look into our bedroom … well, there are no words to express my sadness.

The change began four days ago when I went upstairs to see how things were going  with Bo’s shower and discovered that the wet, glass shower doors were leaning against the bureau  in our bedroom.  Bo had passed out in the shower and Jon had to remove the doors to get him out.   Bo was seated,  slouching  against the corner of the shower,  his eyes closed, his head flopping sideways as Jon dried him, then picked him up like a baby and carried him to his bed.

When he was settled in the bed,  I stood beside him,  rubbing his forehead and holding his hand, wondering if this was the time.  Jon had thought Bo was dying in the shower.  But he  began to slowly get a little better. By the next day  he was chewing and swallowing  when we  fed him.  (We have been on the alert,  knowing that one of the final stages of Alzheimer’s is forgetting how to chew, pocketing food, and the inability to swallow.)

When the Hospice nurse visited later,  she commented, “This is the first time I’ve really seen Bo as an Alzheimer’s patient.  His look has changed.  He’s weak,  unfocused, and feeble.”

And then she and I talked about our future…again, but this time with a feeling of imminent decision in our words.  There will be no antibiotics.  Food will not be forced.  Comfort is what is important.  If he knew  …. oh, if he knew how things are, he would be despondent.  Nine years of no life, and now just lying there, unable to tell us anything, unable to understand, unable to decide. The final decisions all rest in my heart.

Bo’s slide into Alzheimer’s has been gentle and graceful,  but now I’m having to think that it’s time for this to end.  When I think of losing him, my heart breaks and, selfishly, I think of how it will affect me,  my loss.  But no one could want this existence for him,  for a man who was so vibrant and smart , now  so feeble and sad …. this is wrong.

A Season Unnoticed

It’s usually easy for me to write  a post for this blog.  I have an idea that percolates, then I’m ready to write.  But in the past month,  it has been hard.  I don’t know what to write.  At least, not about Bo because he is simply steadily declining in tiny increments.

I went on a trip for eight days right after Thanksgiving and when I returned, I could see changes.  Jon and Cynthia and our Hospice nurse also see them,  but these changes are hard to describe.

Less communicative,  less mobile,  less eye contact …. more sleeping,  no sundowning, no wanting to “go home.”  He had a bad cold and coughed and coughed but it’s over.  There is a constant struggle to keep his intestines healthy.  He rarely moves more than his arms or legs on the bed or sofa and never attempts to get up.  The baby monitor is helpful because we can check on him from anywhere in the house.

Occasionally he tries to say something.  Sometimes I know what he  means;  other times I have no idea but I try to respond.  He smiles at me and wants to hold my hand or rub my hair,  but I haven’t heard him say my name in over a month.

Meanwhile, our house is ready for Christmas — two trees up and decorated inside,  and  Jon’s special lights in the front yard. … so special, in fact,  that people are stopping in front of the house to look at them.  (He made the big ornaments hanging in the trees and the ball.) But Bo notices none of it.  He used to love Christmas lights; we often rode around at night just enjoying them. Now, if we could get him into the car,  he wouldn’t notice anything around him, even when we pointed it out.

Yesterday I took the children to Philadelphia to see Macy’s famous light show then to City Hall to ice skate  (even though it was almost 70 degrees.)  NancyCamp slowed down this year, but we’ll do more in the next two weeks.  And Bo will sleep at home while the holidays swirl around him.

About the stars ….

Three posts ago, I questioned whether the stars were misaligned because of all the things going wrong here at our house.  Bought the tires and the new refrigerator, sodded the yard… thought things were under control.  But there’s  a new wrinkle — the plumbing.

Unbelievable.  When the washing machine drained,  the sink and toilet filled up with soapy water that overflowed,  flooded the laundry and powder room  and damaged the floor.

The plumber came.  He plunged and snaked and I handed him a hefty fee plus a weekend “penalty” and we thought the problem was solved. But it wasn’t.  That was Saturday.  On Sunday  morning as the water ran out of the washing machine, once again the toilet gurgled and water bubbled up to the rim.  No!

The plumber said (on the phone) that I’d have to pay another $79 penalty for a weekend call, and I responded something like, “Over my dead body.”  I hung up, telling Jon that we’d have to find a bathroom… maybe a kindly neighbor?  We could survive 18 hours, couldn’t we? But  half an hour later, as I seethed and had already begun writing my letter of complaint to the  plumbing company CEO,   the plumber called back.  He would be here later this afternoon — no extra charge.  Well, no Sunday penalty.  Most likely, he added, we’ll need to schedule a videocamera to examine the sewer pipe in the front yard.  Maybe tomorrow.

New alarms rang in my head.  The front yard?  A videocamera?  Tree roots, a broken pipe?  I’m envisioning a bull dozer, maybe an earth mover, a steam shovel, a hydraulic excavator. My sod chewed up like Ceasar salad.

Alas, the story has a happier ending.  After working on the sewer line with a snake while running water for two hours,  the line is finally open — and the yard wasn’t even touched.  The plumber announced the work is covered for 30 days, so there was no additional charge.  And, he added just before he left,  “Don’t buy any more of those baby wipes,  not even if they say ‘flushable.’ “

On the bright side, at least I’ll get more points on my credit card.    That’s good, isn’t it? At the rate things are going this fall,  I should earn a flight to Australia in no time.