Coming Home - Going Home

Julie, Bob and the Root Beer Float

In early March my niece, Julie, was visiting Bali for the first time and staying in my house while I was in the States.  Having heard a lot about Bob, she decided to visit him even though she’d never met him. Knowing how much he liked root beer floats she brought one. They had a nice time together – she feeding him his float and talking with him in whatever way seemed appropriate.  

 

A few days later she was having beach time on a nearby island when I got a Skype call in the States. Bob was back in the clinic running a very high fever. The doctors wanted permission to send him to the hospital. 

After consulting with his daughters we agreed we wanted him sent home.  He had pneumonia again and we wanted to honor his Advanced Medical Directive that clearly stated he did not want antibiotics or heroics in this situation. 

Julie abandoned her beach time and immediately returned to take care of Bob. As an ICU nurse and this was right up her alley. It seemed like Bob was ready to ‘go home’.

I considered flying back to Bali but I had so much left to do in the States before my return that I decided to stay. I’d said good-bye to Bob and put everything into place before I left so that if he didn’t survive my absence, all would be taken care of. Still it was a difficult decision.

Once home from the clinic, Bob steadily improved. Without my knowledge or permission, the clinic had been giving him antibiotics.  When I found this out I could have been angry but it felt so out of my control that all I could think was, ‘there must be a reason Bob is still with us’. 

Finally he improved enough that the IV was removed. He was eating again and getting stronger, although he couldn’t hold his head up unaided.  

I came home to Bali on March 21^st. That day Bob stopped eating. I went to see him on the 22nd, our 28^th wedding anniversary. His breathing was difficult and burbling.  He was in and out of consciousness. Still I told him how much I love him and what a great husband he was to me. I told him stories of our time together, of our life in Bali these past 25 years. 

It was clear he was dying. He breathed shallow hard breaths. We propped him up higher in the bed and that helped ease the struggle. Bob had always been my protector so I whispered in his ear, “It’s Ok to let go Bob.  I’ll be alright.”

Julie came later in the afternoon. We decided to call the clinic. It was painful to see him struggling so. They checked his heart – irregular and weak. His oxygen level measured only in the 60’s so an oxygen tank was sent round to aid his breathing.  Liquid valium was added to his hydration IV to bring peace to Bob and his wet lungs.

Skype brought his daughter, Michele, into the room from Hawaii. “I love you Dad, and I wish I was there with you. Thank you for being my Dad you’ve been a good one. It’s OK to go. I love you.”

I couldn’t get a hold of Dawn, his other daughter.  There was no turning back from this, no miraculous healing, no Bob outliving us all as had happened over and over in the last years.  I felt swept up in a phenomenon totally out of my control.  All I could do is make Bob as comfortable as possible.

On Sunday the 23rd I went to see him first thing in the morning with a friend who wanted to say good-bye. Julie joined us later. I told him again it was OK to go, I would be alright. I told him how happy I was that he waited for me to come home. I continued telling him stories of our wonderful life together traveling the world and living in Bali.

Gusti, who was the caregiver for that day, told us another man he’d cared for lasted like this for a week, so I had in my mind that Bob was not leaving just yet.  Jet lagged and tired I went home to my own bed that night.

At five the next morning Bob stopped breathing.  He died peacefully, well-loved and well looked after. 

I have felt this entire journey, even in its darkest hours, was somehow blessed.  In some magical way everything we needed was provided. People showed up – angels I call them – like Julie at just the right time.  Bob’s cottage came to me when I could no longer take care of him and thought I’d have to put him in a Alz unit in the States.  Daisy the Dashound needed a home and he needed a pet and he’d grown up with Dashounds.  It all fell into place when the time was right. People, with things to teach me, appeared like the Australian couple, he a retired geriatic physician and she a social worker for families dealing with Alzheimer’s. They trained me and the two new caregivers I’d hired in 2007,

I have so much to be grateful for in this journey into Alz World. And most of all I’m grateful that my adoring and adored husband and I had such a fulfilling and fantastic life together, living our dreams.  I have no regrets – this is the life we were handed and I think we did the best we could with it. Thank you, Bob.

Still in There

Well meaning friends, one of them a brain expert, used to tell me that Bob wasn’t ‘in there’ anymore – that the Bob I knew and loved was gone.  I know their intentions were well meaning. They wanted to protect me from the grief of seeing my Soul Mate imprisoned behind a wall of broken and tangled neuro pathways.  They believed and wanted me to believe he was no longer present.

I started to fall into the ‘no one is home’ trap. It was easier to think he was gone once he became a sometimes-difficult man-child to take care of.  But over time I’ve learned differently.

I’ve written a few posts about this and I’m writing again because I think it’s so important. As the person changes dramatically, it may be easier for our own sake as caregivers and loved ones to think they’re gone. And because there’s so much fear that it may happen to us, we project ourselves into the situation and find it unbearable to consider we might still be in there, trapped behind the disease, unable to get out. How much easier to accept if we believe we would be gone and the person in front of us is too.

Certainly the person as we knew them before the disease, has changed. But behind the changes I believe the original person still exists - not shards of them but the essence of them.

Even now that Bob rarely makes sense – he’s in the last stage of Alz - I know Bob’s ‘in there’ – his personality is ‘in there’.  And every once and awhile he makes his way through the dead ends, the holes, the disintegrated streets of the mind to shine.

 Two Views of Bob and the Sunglasses

 

My office manager, Made, recently visited Bob and sent me photos of his time at the cottage. (I’m in the States on my annual business trip while Bob stays with his caregivers in Bali). He wrote that Bob was attracted to his sunglasses so Made handed them to him.   In true Bob fashion he put them on and was transformed.

This photo zoomed me back to our life before Alz. As painful as it is to think my Bob is still present, it’s also comforting.  

A note to my readers - until I'm back in Bali in late March I'll be writing fewer posts.  My work load is pretty intense here in the States.

Dancing

I was near Bob’s house after a dental appointment so I dropped in. He was asleep as he often is at 11 am. It seems he eats breakfast and then dozes for a couple of hours.  I wiped a glob of strawberry jam off his pants.

Sitting up on his bed, stretched out along side him, I touched his arm with one hand and laid the other on the center of his chest.  I breathed in emptiness without thought, without desire for outcome, and exhaled unconditional love for him. It was a peaceful meditation. 

He snored and snorted, wiggled toes and fingers, but was so deeply asleep that when his eyes popped opened he didn’t see me. I sensed on some level he knew I was there and that we could just be in silence together - me awake and he asleep - it didn’t matter.  What mattered was our connection.  

Communicating Through Dance

When he was still living with me but already deeply into Alzheimer's, we connected best when we danced.  Communicating with language had already been dismantled by the disease but when we danced our hearts united.  So sitting with Bob while he slept and feeling our connection was natural to me.

At one point he had a nightmare and was reaching out trying to grab something. Moaning, he woke and said, “It’s terrible! Terrible!”  I rubbed his chest and said, “The terribles are gone now. I’m here.”  “You are?” he asked, smiling at me and went right back to sleep.

It’s amazing to me that Bob still recognizes me.  I haven’t become a stranger after thirteen years in Alz World, as so many others have. I feel such gratitude for this small miracle. And if a time comes when he doesn’t know me I’ll still feel we are connected and that my presence is important to him even if he can’t consciously acknowledge it.  When I go to visit him I remind myself: this isn’t about me, it’s about him.

I stayed with Bob for about 40 minutes just sharing space.  Then I tiptoed out and went back to work. This meeting in silence was as satisfying as any with conversation. I felt settled for the rest of the day.

Happy New Year

A serious ear infection kept me from seeing Bob for two weeks. I was frustrated as well as being sick. When I did finally get to see him he seemed a bit depressed but he knew who I was.

A few days later, on New Year’s Eve, I returned around 5 p.m. to a completely different Bob. I now think he wasn’t depressed at all but just tired.  He was fresh from a bath and very chatty, in fact, so chatty it surprised me because he usually has little to say and we often sit in silence, just holding hands, communing on a different level.

He was animated and while I could understand little of what he was saying I caught a few refrains.  He said, “I’m carrying a knife, just in case.”.  I agreed it was probably a good idea.

I always agree with what ever he says because this keeps him happy and keeping an Alz person happy is important for their mood later.  My reality is not the slightest bit important. 

I also search my memory to see if I can make a connection with what he’s saying and something in his past, like the knife - he had a hunting knife most of his life which came in handy for cutting bread and cheese at picnics or cutting string or just about anything. I still have that knife safely in it’s leather sheath in a rarely opened cupboard. When I come upon it, it brings the old Bob back to me for a few moments.  When I can make these connections it gives me a deeper way to communicate with him.

After more ramblings he said, “I’m moving my stuff.”  I asked, “Oh are you doing it slowly or all at once?”  Again I couldn’t understand his answer but it gave a feeling that I was there with him and supporting him.

Sadly the only other thing he said I could understand was, “I don’t see you very often.” This always stops me in my tracks. What do I say? It makes me initially feel guilty that I’m not with him more often but then I realize this is Bob’s reality and he will forget this thought in a few seconds. I smiled directly at him, patted his hand, kissed his forehead.  He was OK.

I left with my usual excuse that I had an appointment to do computer work. He’s familiar with this statement and doesn’t hang on.  I have work to do and work was very important to Bob - an acceptable leave taking.

Of course we have no idea what this New Year will bring.  I’m floating on acceptance of ‘what is, is’ right now. I sometimes wish I’d gotten to this place sooner in the Alz journey.  It would have been so much easier on both of us.

May 2014 bring you Peace, Love, and Acceptance.

Memories

I received an e-mail from an old friend we haven’t seen in years. She knew Bob before I did.  It turns out she reads Alz World and finds solace in it as she cares for her mother with Alzheimer’s.

She wrote:   I don't know if you ever heard the story about the time Bob gave me a ride down to Southern California. We’d met through mutual friends. Bob was going south to visit his family and I had a couple days off school so he gave me a ride down and back so I could have a quick visit too.

During the drive we talked about how much we missed the ocean. When we got near Long Beach we could smell the salt air. Bob looked at me and said, “Detour?” I agreed and off we went to the beach! It was a race to the water, fully clothed. What a blast!

Cinque Terre 1984

One of the joys of Bob was that he knew the value of being spontaneous! Well, we dried off a bit and drove to my Mom's house. He came up to the door as I wanted Mom to meet him. When Mom opened the door, she cracked up at the two wet people standing in front of her, then as I introduced Bob, she interrupted me with something like: Bob? Bob Behrens!!! They had met years ago in the decorating business. Small world, huh? Good memories keep my spirits up when the "today" of it all nearly brings me to my knees.

                                                      ***

Stories like this bring Bob back to me in a visceral way. Sometimes I forget who he was because he’s been in Alz World for so long. We had a great run together, a great relationship and I need to keep that memory alive for me.  

I accept who he has become and I don’t even wish it could be different. (Perhaps this is my psyche's way of protecting me.) And at the same time I want to keep the memories alive. He inspired me and still inspires me, only now to keep as good care of him as I can.

Connection

I lost a friend this week to sudden unexplained death - she just keeled over before a singing gig. Autopsies aren’t routinely performed here in Bali unless the family orders one so we'll never know why she died.

I also found out another dear friend has breast cancer and yet another has a recurrence of ovarian cancer. This coupled with trying to come to grips that Bob is in the last stage of Alzheimer’s has me unsettled.

I went to see Bob a few days ago.  It was very sweet. He held my hand and kissed it several times - a big endeavor because he’s quite uncoordinated. He’ll reach for a glass on the table and think he has it, slowly bringing to his lips an empty shaking hand with nothing there. His hand opens and you can almost see his energy dissipate as confusion shades his face.

Bob gazed into my eyes for a long time during my visit and told me, “ I love you very much.” This of course brought up tears which I had to fight back because I don’t want to confuse him or make him feel badly.  We were mostly silent but our eyes seemed to be carrying on their own conversation. Several times he kissed my hand tenderly.

This is quite a departure of some months ago. Now that Bob is wheelchair bound he seems less confused about who I am.  He seems more at peace with the present moment and rarely gets angry or impatient any longer.

He also seems to be slowly physically disappearing. In spite of eating a good quantity of food his clothes grow bigger on him almost every time I see him. I also know there’s nothing to do, that the best I can do for him now is let nature take it’s course. Still it’s a challenge because I’m a take charge, let’s solve this problem, kind of person.

I realize I’ve crossed over some kind of invisible line where I’m just required to show up and be with him. I don’t need to entertain, get him involved, or effort at engaging Bob.  He’s at peace. Now I need to be.  I’ve been a human doing and the best for him is to rest in Being while in his presence. 

Connection 

There’s something still inside of him that connects us so deeply that it goes beyond mental capacity.  There’s a purity in his eyes when he looks into mine. It feels like unencumbered stripped to it’s element - love.  And it’s not just for me. He also expresses appreciation for his caregivers even though he may ask their names repeatedly.

It feels like Bob is slowly becoming this elemental love and when that’s complete he’ll be able to leave this world. His exit won’t be sudden like my friend’s but it will still leave a big hole in my life.

Planning for the Future

When I walked through the Bob’s gate yesterday afternoon, I could see him sitting in the wheelchair watching TV with Wayan, one of his caregivers.  He still had the sheen of coconut oil on his skin from having his weekly massage a few hours earlier.

Every Sunday a local Balinese masseuse comes to work him over. It seems to help his swelling feet and he loves it, always dozing off in the middle of the relaxing session. It’s obvious Bob’s circulation is not running at full power any longer.  But with the massage, and naps with his feet elevated, the swelling goes down. Plus he's always liked massage, having studied and practiced it himself.

I see such a change in Bob since his birthday in April that I’ve started to prepare practically and emotionally for the end of Alzheimer’s - the end of my sweet husband.  He’s in the last stage of the disease and I’m guessing he’s in the middle of that stage.  It’s characterized by the inability to walk, needing assistance with eating, complete incontinence, and a thinning of communication.

Because I have to return to the States for two months at the beginning of the year for my shows - an integral part of making our living - I want to have everything in place if Bob passes away while I’m gone.  I want it to be spelled out so our staff and friends know exactly what to do in this country that is run very differently than the States. Planning ahead is not part of the Balinese tradition. They really live pretty much in the present moment although that is changing as they modernize.

I have the local clinic alerted and Bob’s landlord will contact the village head to keep him in the loop. We will need two death certificates. One from the clinic and one from the government - this one will be the most difficult. The police will investigate because we are foreigners. My next step is to find out about the cremation which I’m hoping can be closer to Ubud and not the two hour drive to the one in the South.

Emotionally this is difficult. I feel almost like I’m betraying Bob by planning for his death and yet intellectually I know how important and responsible it is. I don’t want to leave a mess for others to figure out.  And I’m having to face that my soul mate is dying, albeit slowly. 

Even in his illness, he is an anchor for me.  He is an impetus to push on when life gets difficult. I have had to work at being ready or at least willing to let him go and this hasn’t been easy.  Now I only want to keep him comfortable and give him the best for however long he has left on this earth. 

Filicudi Italy 1984 - Where Bob Came to Claim  Me

It was sweet yesterday, sitting with him and Wayan watching an animated Disney movie called, A Bug’s Life.  We held hands, Bob played with the door knob, and he laughed at who knows what. I showed him some photos of when we first got together. He looked at them for a long time.  He tapped his finger on his image but I’m not sure he recognized me.  I said, “That’s us Bob, a long time ago”. 

I kissed my husband good-by and told him I love him. He looked right into my eyes and it was clear our connection is still there.