"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.

Aaaarrrrrgggg

Calling RD's doctor and talking things over with our home health care agency calmed the roiling water a bit for me.  The doctor prescribed a compounded form (topical cream) of Lorazepam.  Vigilance is required when considering neuroleptic medications for my husband.  Many drugs have adverse side effects in LBD patients.  Feels like walking a tight rope without a net.  RD's behavior can be agressive and angry, demanding and physical, especially in the evening, however, side effects of administering medications that may calm him down also worsen the Parkinsons symptoms and make him drowsy and lethargic, even to the point of not eating.  Seems like "damned if you do and damned if you don't" kind of dilemma.
On Tuesday, I rescheduled a hair cut I had canceled in October.  I decided to treat myself to a facial as well.  I hired an RN to stay with RD from 12:00-4:00pm that day and looked forward to the 'me' time and some pampering.  The stylist finished the haircut and styling and was beginning the facial  when my phone rang.  It was the nurse.  She told me RD was trying to hit her, telling her to get out and leave him alone, cursing and swearing at her and attempting to leave the house.  She could not quiet or calm him.  She couldn't restrain him without fear of causing him to fall. She requested I come home.  I did.  This is a 9 on the frustration scale.  Walking in the door, he practically ran to me yelling, "Who the hell is she?".  I calmly explained who she was (she had stayed with RD on at least 2 previous occasions) and that I was getting my hair cut and needed her to be home with him.  He nearly fell into my arms with a look of relief and exhaustion.  Who knows what was going through his mind or if the behavior was the result of fear and anxiety. I constantly guess and speculate on why he acts a certain way but trust me, I don't really know a damn thing about it.  Not only is this behavior so NOT like him, it is alien to his being.  I do not understand this disease or the havoc it wreaks on RD's mind and mine.

A Not So Good, Terrible, Horrible, Very Bad Day

Pacing, restless, agitated, and determined to "go home", RD was impossible to calm or comfort this evening.  Finally, in frustration and desperation, I put a jacket on him and off we went for a ride in the car,  looking for the 'home' of his childhood. When he wants to go home night after night, he is actually looking for the home of his youth.  Tonight I asked him if he wanted to go to the home he lived in when he was a child.  Without hesitation, he nodded yes and looked hopefully at me with a big smile on his face.  Night after night this same routine begins around 5:00pm.  I dread it more than anything because his demands to 'go home' are unrelenting and become more and more angry.  Tonight he got into the car and sat there for nearly an hour.   I kept going out to the car, opening the door and trying to persuade RD to return to the house.  My sweet talk produced even more anger and agitation.  I wish I knew how to handle this kind of situation.  I wish there was someone to talk to or to cry with.  My own sense of helplessness gets overwhelming sometimes.  While standing in the garage, freezing cold biting at my bare arms,  feelings of loneliness swept over me.  I am alone in this battle with Lewy Body Dementia and I already know LBD will win in the end.

Busy Day

Scheduled a "Care Assessment" for Thursday this week.  Home Health Care nurses nudged politely and then nudged again, pushing me forward (I definitely needed). I'll be curious to listen in to the assessment of Richard's needs.

A Reasonable Fall Day

Another perfect fall day, the last in fact, before wind and rain took the last of the leaves from the trees.  Walking can be exhausting for RD so the fact we could make it a sweet seat under the tree for a moment in the sun and pictures - priceless.  One week later and the sky is dark and gloomy.  A November rain (cold drizzle with intermittent downpours and sunless skies) dominated all activities today.
Don't know if you've been there yet but I hit a 'magic' age where colonoscopies are highly recommended every ten years.  I declined the first (age 50) but decided at 60 to pull my head out of the sand and get it done. Taking care of both my physical and mental health have moved front and center in my life.  Can't figure out how I would be a primary caregiver to my husband if I was battling anything more complex than a cold.  To tell you the truth, even a cold would be somewhat dangerous given RD's COPD and his susceptibility to infections, especially lung infections.  But I digress; back to the topic of colonoscopies... I scheduled a nurse to come in to care for RD while I made a pre-op doctor's visit.  My colonoscopy is scheduled for Nov. 30.  I'm neither scared nor anxious but will be happier when this is a distant memory and all is well with the world again. I've made no attempt to explain this to RD.  I'll cross the bridge to explanation a few days ahead of the procedure.  So glad I was able to find someone to take my place for the day so I don't worry about him for at least one day.  I'm going to be given demerol and valium so I won't remember much - sounds like a mini vacation to me!

Tranquil Water, Calm Current

My sister, Mary, came today for a 3 day visit.  The afternoon was filled with talk of two summer weddings ahead - both of her daughters will join hands with the men of their dreams.  New families will be formed and the cycle of life will begin again.  I love having my sister here.  She took pictures of RD and me outside under the locus tree.  She managed to capture some sweet, enduring moments beween us. I didn't want to wait even a few months to have the photos printed.  I'm always worried about what what next year will spring.  So much catching up to do which is a cross between family gossip and love spread around through family news. We've been discussing a newly announced pregnancy (nephew and wife married in June) and new jobs and new careers starting for all nieces and nephews in their 20s.  Gotta admit to feeling a bit odd at having to move over for a new generation of young people beginning families and careers.  Wasn't that just me a few years ago?  How did this transition begin so quickly?  I'm now "Poor Aunt Jo Ann and Uncle RD".  "Isn't it tragic to see Uncle RD like this and it's even worse on Poor Aunt Jo Ann"   Apparently, I'm seen through a new lens now.  I'm not the fun-loving aunt nor the sexy dresser nor the what will her hair look like the next time we see her kind of aunt.  Frankly, I don't see what they see.  I'm still the same girl inside I was 30 years ago.  Only the face and body has changed.  Not the soul nor who I am inside.  The outside isn't matching the inside but I'm thinking no one is taking time to explore me as a person much anymore.  It's natural to focus on your own life and the new, exciting events coming into view when you're 20 or 30 something.  I did the exact same thing.  Something is natural about the process unless you're the one aging then you kind of want to hit the rewind button and start play again.
My niece, EE, is one of the girls getting married next summer; planning a destination wedding to Mexico.  I've been worried about finding a place for RD to stay while I'm attending her wedding.  I can not imagine missing this milestone in her life.  She is my Godchild and the closest I will come to having a daughter.  She's my heart and the strings making it sing. Perhaps I shouldn't be worried eight months before the wedding but I've already checked out the local skilled nursing facilities and the chances of having a bed available for a week long stay seem unlikely if not impossible.  What to do, what to do?  I've reservations to make and flights to book without a clue as to his care for seven days.  Okay, the first suggestion if the most valid - take a deep breath and notice the tranquil, peaceful water all around you.  RD has had three wonderful days of "aliveness".  He's laughed and talked just a little.  He's eaten both healthier  and better than he''s eaten in weeks.  I should be grateful for the sweet courtesies in life.