A Broken Heart

My dear, sweet husband, Richard, died yesterday (January 25, 2012) at 11:00am.  I could drive a truck through the hole in my heart.  I wonder why I am happy to see him free of the prison created by LBD and an overwhelming need to pull him back.  He is gone from my sight but never from my heart.  I love you, Richard.

Making the Most of Time

I have found what I believe will be a wonderful caregiver to come in 8 hours a day.  Another young woman will come between 8:00 and 9:00 pm to help me get RD into bed.  What a relief to finally have help in the house.  I was reaching my physical limit in transferring and moving RD.  With stress reduced in caring for him, I know the time ahead will be more focused and pleasant for both of us.  "Quality time" is a tired phrase but maybe it will have meaning for the two of us going forward.
Having someone in the house for 8 hours/day will be an adjustment but the positive outweighs the negative.  The real test won't be whether I can adjust, it will be whether RD can tolerate it.  He has always been a private, work alone, solitary man.  A social butterfly he is not.  LBD hasn't changed the core of him.  He prefers life as a twosome.

A friend is having a birthday tomorrow so I've baked a cake tonight.  Just doing routine things like that make me feel part of the 'real world'.  Because I have a new caregiver coming, I will even get to meet up with our group of friends to celebrate. Sounds wonderful and is making me smile.

A Long, Lonely Day

This one is difficult.   On January 8th, RD slept all day without waking.  This continued on into Monday, the 9th.  No food, no water.  I could not wake him.   Planning to call the doctor on Tuesday morning, I went to check on him and he was wide awake.  After cleaning and bathing, he was lively and energetic all day.  He ate like a horse and drank and drank and drank some more.  Late Tuesday evening he fell.  I called an ambulance because he was complaining of pain in his leg and hip.  Six hours later we found ourselves in a hospital room, not because anything was broken nor had he been injured but because his blood pressure was sky high.  It was to be a 48 observation admission.  At some point early Wednesday morning,  RD fell back into his deep sleep from which he could not be awakened. He stayed in a coma-like event until Thursday afternoon.  He was back into the deep sleep on Friday. There was no way to arouse him from this sleep.  A Home Health Care worker came to the house and panicked when seeing RD.  She called his doctor and described RD's condition, apparently, telling the doctor she didn't think RD would live through the weekend.  This triggered a major assessment of RD in the hospital.  His lab work looked great.  No problems with blood, UA, pulse, etc.  His blood pressure was remaining high so another observation.
RD was furious to find himself in the hospital again. He told me, "I was in a peaceful, happy coma and you made me wake up".  Friday evening, after the second admittance of the week, RD's primary care physician, called me into a tiny space to talk about RD's prognosis and condition.  He explained the signs of end-of-life and felt RD was meeting the criteria. He calmly told me it would be about 1 month.  I'm ashamed of my juvenile response - "You're kidding me!".
I've no doubt I'm in some state of denial.  I don't really believe the physician is right on this one.  What is shocking to them is more routine to me (long periods of sleep without waking). Agonizingly,  I have contacted Hospice and they have made their first visit. Time will reveal her plan soon enough.
Love to all who read this note.
Jo Ann

Change, Change, and One More Change

Things they are a changin. New and frightening changes.  Last Tuesday began as any day might.  Routine and familiar.  Around lunchtime we moved to the kitchen area and were sitting quietly, watching the street activity.  Suddenly, without provocation or cause, RD began to stomp on my foot.  He kicked me between the legs, grabbed my arms and twisted. The look on his face was something out of a movie scene.
The following day we are sitting in his doctor's office.  Tears roll down my cheeks as I describe my husband's behavior.  Why do I feel embarrassed and bewildered at the same time?  I have NO skills in managing this behavior and it came out of nowhere.  I don't know if it's a one time event or a new and permanent behavior.
RD's doctor listens (as he always does) and prescribes an antipsychotic medication.  Just hearing the word "antipsychotic" knocks me for a loop.  A very scary word, this is.
After we arrive home, I go to the computer in search of more information about the drug prescribed.  I don't feel comfortable with what I'm reading.  Information is not the same as knowledge.  I can get endless information from computer searches but I obviously lack "knowledge" about medications.  I am neither a pharmacist nor connected in any way to the medical field.  Recognizing the frustration a medical professional must feel when patients or family members try second guessing his/her decision, I approach the doctor with some dread.  Will he brush me off, get exasperated with the 'butting in"?  It turns out, he welcomes my questions and concerns and is willing to prescribe the medication I request.  I'm SO happy he's open to the possibility of sharing information and decision-making.
It's been a mere three days since I've started the new medication but already I can see changes and all are positive. This will sustain us until we need to make another change.
Been there,
P. Jo Ann.

All I Want For Christmas Is...

My step-son came to visit this weekend.  It is a 700 mile round trip for him so visiting for 24 hours is a 36 hour trip in reality.  It was wonderful to have him even though it was a short time.  My husband's eyes lit up when CC walked in.  His facial expression didn't need any support from spoken language. Message conveyed and completely understood.
I've been looking for a way to exercise - something I absolutely don't enjoy.  I once joined a fitness club with my husband and honestly, I wouldn't have gone more than the first month but for the prodding and determination of my husband.  He never wanted to miss our exercise routine. Thinking instead of doing is an unfortunate character flaw but this time I've got some new motivational, kick in the pants, do it kinds of incentives. Reading an article on the benefits of exercise, the author suggested returning to activities you loved as a child.  That was easy for me.  I loved bike riding, hide and seek in the dark, swimming, and roller skating.  Both the bicycling and roller skating struck a note and out came a flood of pleasant memories. As luck would have it, my step-son has worked on the retail end of bike sales and is also an accomplished bike mechanic.  He agreed to help me choose a bike and make sure it was fitted just right.  Lucky bit of fate having CC visit at the very time I decided to purchase a bike.  I've just got to get up my nerve to let go of the money.
I'm buying my own Christmas present from RD this year for obvious reasons. Maybe the bike will be the surprise.
RD has had 3 or 4 'good days'.  The unit of measure in this case is how many hallucinations, delusions, and capgras episodes he might experience in a day/night.  Although it has been extremely difficult to understand his speech this week, he has been more engaged, talkative and interested in the world around him.
Snow began falling yesterday round noon and continued until noon today - maybe 8-10 inches. The snow was accompanied by 25-35 mile per hour winds so snow drifts made driving nearly impossible.  We ventured out anyway to mail a Christmas gift, renew a dog license, and check out the snow totals around town.  RD was pointing to the high drifts and mountains of snow piled up after cleaning a parking lot here and there. He made several comments about the piles of snow around town.
Today's behavior has nothing to do with how tomorrow will go but I am VERY thankful for today.  Merry Christmas if you're listening.  All I want for Christmas is you (oh yes, and that bike).

"I Want To Go Home"!

Spoke too soon.  The plea to "go home" began again this evening.  I asked what home he wanted. To my surprise he said, "Oak Street".  He lived on Oak Street 40 years ago with his first wife.  Experience tells me to act on this desire rather than spending hours trying to redirect or talk him out of it.  Unfortunately, we had our first snow of the season today.  Although it wasn't much snow, it was a heavy, wet snow.  It left a thick slush on the road ways that began to freeze this evening.  But, undaunted, I bundled RD up with a coat and hood and seat belted him into the car.  Off we went for an evening ride around town.  Our first stop was Oak Street but he could not identify his house.  We drove past his old office building, the courthouse, the library, and familiar landmarks.  Eventually, I grew nervous driving around on roadways teetering between ice and slush.  When we got home, RD seemed happy and comfortable back in his real "home".  Wish I could figure out why "wanting to go home" is a nightly request.  Most of the time, the home he wants to return to is his childhood home but tonight was different.
He is in bed early this evening (8:00pm), giving me a blessed few hours alone. This time sweetens my life.  My sister asked if I had any particular wish for a Christmas gift this year.  Without a moment's hesitation, I told her the gift of time would be the best gift I could receive.  If someone could come and stay with RD while I went out alone - priceless. If you can move about with ease, the penned-up feelings associated with 24/7 care escape you.  There is really nothing else quite like it.  What I wouldn't give for a day alone, free to explore what I want, when I want...

A Few Good Days

Dreaded the news I knew was coming - Home Health Care terminated services today.  RD has improved his strength and endurance significantly after six week of exercise with home health care professionals.  The good news - he's doing much better.  The bad news - he will no longer have the support under him.  Neither will I.  This group of nurses were a godsend to me, solving a month-long battle with RD's heal wound in less than a week, helping me find innovative ways to increase RD's calorie intake in healthy ways, and listening, really listening to what worried me. Back on my own in this completely baffling world of Lewy Body.
Five days of calm and quiet. Aaaaahhhh!  RD hasn't engaged in the nightly ritual of wanting to go home, trying to leave the house, and agitation for nearly five nights.  What a wonderful relief to spend an evening watching TV and responding to an occasional misidentification of an object (tonight he thought his shirt was a fish).  How long will this last?  There is nothing about today that will predict tomorrow.
A long day indoors.  The weather has turned cold and blustery.  If forecasts hold, tomorrow will bring freezing rain, turning to snow in the afternoon.  This will be the first snow of the season if it shows up.  I'm already thinking of spring.  The older I get, the more I dread the winter cold. Wish I could move to a warm climate, putting my feet on a beach at will.  Okay, a little too much time to dream I suppose.