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.