On Calendars, Island Time, Bats and Twins...and saying goodbye.

For those of you who have read my blog in the past and are not aware, I am sorry to tell you that my sweet boy passed away January 2, 2012.  That's 1-2-12.  Just keep in mind, his birthday was 11/11/11.  He died two days after his Twins Calendar ran out.

His last 6 months were not pleasant, yet had incredible moments of sweetness to them.  His ability to communicate was gone, for the most part.  His violence would come and go.  His ability to stand up deteriorated.  He was down to 130 pounds.  And yet, we held hands.  When I would get there, the look of relief on his face that the cavalry had come melted my heart.  All of the things that used to drive me nuts I can no longer remember.  He became my sweet boy. 

His funeral was uplifting for me.  We celebrated his life.  It was not a tragic death, it was horribly sad that he passed, but not tragic.  John had a shirt that said "I'm on Island Time".  After he passed, I put a tag on it that read "John is on Island Time".  And that's how I think of him.  At our cabin on the island...taking care of the spooks up there.  ;)

So, here's what I will leave my blog with.  The night before my dad passed away, I sat in their living room which overlooked the Minnesota River Valley.  It was hot.  About 100 degrees outside.  And I asked God for a sign that all would be OK.  And a bat came outside the window and hovered. 

Well, I needed a sign this time, too and asked for it again.  And again.  Nothing.  Until last night.  It's time to pull the plug on the outdoor Christmas lights according to our condo association.  So, without looking to carefully, I reached into the outdoor electrical box and felt something squishy.  And shrieked.  It was a dead bat..although I didn't know it was dead at the time.

My first reaction was "Where the hell is John when I need him...he'd take care of this for me."  He'd say - "wait until morning, it'll be gone and you can tighten that box up."  And then it hit me.  It's too cold for the bats to swoop and hover.  But somehow, with the weather warming, one crawled into a space that John knew I'd have to touch.  Asshole.

So, my next question becomes why am I being sent bats?  I am the most afraid of bats of any living thing unless they're sleeping.  Because, my dear girl....you need not be afraid of what scares you the most.  You are being taken care of and watched over.    And it will be alright.

It's a reflecting back on the last year kind of day.

A year ago, John and I made his last trip to the farm.  Dian was on vacation, the grass needed mowing and the garden tending.  Today, I made that same trip, for the same reason, but this time alone.

Looking back to that trip, as crazy as it made me, I now see it as a watershed moment in my life.  It opened my eyes as to how sick he really was and to the fact that he couldn't be left alone anymore.  I had to make some decisions and quickly, as September was staring me right in the face.  How could I go back to school?  Well, we know how that turned out.  John is fully into stage 4 of a 5 stage disease. There's no predicting how long stage 5 will last.  If anybody thinks they can tell you, they're full of you know what.  The very nature of LBD is it's unpredictability.

The very nature of life is it's unpredictability.  This has been a year of loss.  Not just John to the nursing home, but more tragically, my dear nephew, Tim.  Then there's the "STUFF" like the cabin, finances, my life....meh.  Whatever.  It's stuff.  Buddhism teaches you that suffering comes from attachment.  Try not to get attached to "STUFF"....

But it's been a year of great gains for me as well.  I have found strength and acceptance.  To be sure, you take life day by day.  Shoot, at the nursing home, things can change in a heart beat, so taking it minute by minute when I'm there is the path to peace.  One minute he's calm and sweet and the next minute he's threatening me with a tootsie pop.

Understanding the role humor truly plays in my life has also been a gain.  Where would I have been this year without that 9th graders' sense of humor?  When he's got a latex glove on his foot or his shoes don't match and they're on the wrong feet....then there's the stuff I won't publish, but crack me up as well.

Allowing myself to grieve has only really just started this summer.  I think it took awhile because I've just been too caught up in dealing with all of the busy stuff of caring for him and working.  I think saying goodbye to the cabin in June opened the flood gates.  And they're not just moments either.  Pity parties like that take a while to kick all the guests out.  Shoo!!!  GO HOME!!!!

Centering myself in prayer and meditation takes awhile.  But fixing my heart and head on what needs to be done to live this life abundantly as God would have us do is my to-do list.  Each and every day.

I hope that you, too, can find peace and understanding....

It's a reflection of the last year kind of day.....

A day in the life: It's a taking stock of self kind of day

A day in the life: It's a taking stock of self kind of day: "Ever since I joined the LBD Caring Spouses group - which was several years ago, I've been telling spouses to care for themselves. This is s..."

It's a taking stock of self kind of day

Ever since I joined the LBD Caring Spouses group - which was several years ago, I've been telling spouses to care for themselves. This is so much easier to say than do when you have a patient at home with dementia. The first couple of years go ok and the spouse still has somewhat of a life away from the home, but then comes that day, either gradually or like a bomb, when the spouse comes to an understanding that his or her life has to change dramatically. The understanding that you are now housebound 24-7. To leave the house means not knowing if your spouse will even still be there when you get back, and if he or she is, what will the house look like and what will be hidden. Looking back at last July just kind of brings it all back: the peeing on the floor, trying to jump off of my friends' deck, opening several cans of soda at one time, throwing out knives, hiding things. Oh man. I can laugh about it now...

Then there's that first stage in the nursing home. You have to give up control of just about everything....his medications, his sleep schedule, his eating - all of the things you have worked so hard at these past few years. Your life was dictated by his pill schedule and then eating schedule because the pills and the food have a set rhythm to it. But you don't give up, really. You watch like a hawk those first few months. You go to see him or her every day and spend two to three hours each time. You eat Lean Cuisines because you get home and are too tired to cook. Your life becomes defined by going to work, going to the nursing home and going to bed.

And you're reinforced by your spouse to show up every day, because that first time you don't go, he goes bat shit and winds up slugging the nurses who call the ambulance and send him to the hospital. Later, they figure out to call you first and you go over at any time of the night to calm him down.

But eventually, the nurses and you figure out what works and you start to ease back a bit. Not too much because the first time you take two nights off in a row, he asks you for a divorce. Fortunately, the cookie lady walks by and his attention gets refocused. I'm telling you, the nursing home and the junior high have a lot in common.

It's almost a full year since we first hospitalized John and then put him in the nursing home. Looking back to our last night sleeping in the same bed, I can't remember if I slept that night. And thinking about those first few months in the nursing home, I still wondered if I could bring him home.

Well, I know better. It's only difficult to accept because he still looks like John and once in awhile he's aware of what's happening. But I know he's where he's supposed to be. And so, it's time to take care of myself and not be defined by going to work, then the nursing home then to bed. And good bye Lean Cuisines. I have moved on to a great extent. I decided at Christmas to start doing things which bring me joy. So, I bought a ukelele and joined the Twin Cities Community Gospel Choir. I'm not doing so hot on the uke, but God surely kicked my butt into that choir. Not only does singing Black Gospel music fill me with joy, but the prayers offered by the director are so centering. And there are people there with far worse stories than mine and so I'm reminded how good I truly have it. I have shelter, my health, a good job that I actually love, fabulous friends and family, a supportive church and the love and adoration of a man I've been married to for nearly 31 years. What more could I ask for....

God wants us to live our lives abundantly and to have joy in this life. That joy can be found by living the life that He outlines for us and trusting that He will take care of our hearts, if only we let Him. He's not there with money (Dang it) He's not there a new man (dang it), but if we listen, there is counsel and healing of our hearts.

I believe mine has started to heal. I have so many of you to thank for that. Continuing to stand by me and laugh and cry with me - harder times are coming for sure, but know that John and I are well cared for.

It's a time to let go kind of day....

It's been a long time since I've posted. Life seemed to go on the same for a long time. I was even taking two days off in a row from time to time.

But John is sliding into his hell. He is becoming increasingly violent toward the staff. Not every day. So we hadn't really thought too much of it.

But lately, it's come on more frequently. And sometimes in a way that makes me laugh. And that's the hard part, because my John was such a private person. I might want to laugh at what he's been up to, but that's not something John would have wished to have been made public.

I remember his first and ONLY trip to Sioux City for my uncle's 60'th birthday. Being Harbeck's, we OF COURSE started to talk about farts. Sorry - it's a Harbeck thing. John was so upset. He NEVER EVER had talked publicly about such a thing. He soon became inured to it. But the point is, he was such a private person. He was a true introvert. He processed all things internally. What I learned from this was so amazing. I always thought shy people were just shy and maybe even too timid to share their thoughts. What I learned from John was that an introvert has just as powerful of thoughts as an extravert, but is more selective as to whom those thoughts are shared. That's more powerful than an extravert like me who shares pretty much whatever I'm thinking all of the time.

So. While I won't share on the world wide web all of the details of his almost denouement, I will tell you it's not John. My John wouldn't hurt a fly, let alone me. He came close to crushing my hand today. It's ok. He wanted to bite my arm while he had my hand in a death grip. I'll check my tetanus shots and put ice on my knuckles.

And this is only today's episode.

I don't believe that God is doing this to John or to me to teach either of us a lesson. I believe God is weeping along with us and is readying a place for him. Any other God is not a God I want to believe in. Nobody is that cruel to allow this debasement to occur.

So please. If you pray, if you believe, pray that God takes John home very soon.