BARRY’S JOURNEY No. 13
sometimes a guy
BARRY’S NEW DIGS
After being kicked out of assisted living in Edina, Barry is now in a care facility (aka old folks’ home.) The first time I went there, I thought no, no, no — he can’t be in this place. But I have realized that this is the best place for him.
I want to hold your hand
He began in the rehab unit but was soon moved to the Alzheimer’s unit with lots of guys just like him. I am learning to love his new place. The nurses really care and nothing seems to bother them. As Barry walks the halls swearing, they all try to redirect him. I learned that term “redirect” — and it works! They told me not to grab his arm but to take his hand when trying to guide him. It works like magic. He loves to hold my hand, so he will walk and do what I want him to.
As Barry regained strength after the hospital stay, the doctors decided to cut back on his medications. They said that if the meds aren’t helping him, why continue to take them? This made sense to me! Then I started thinking that when Barry is off the drugs, he might be better and maybe could come home to live a somewhat normal life. Maybe it was the drugs doing this to him. But I realized this is the type of magical thinking that children do.
Magical thinking
I remember being in kindergarten when my grandfather died. He was the first person I ever knew who died. I really loved my grandfather. He was teaser, and I remember being so comfortable around him. Although I was very young, I felt so worried when he got sick. After he died, for years and years, I would imagine that my grandpa was just pretending to be dead and that at any moment would pop out, tease me and, well, not be dead! Funny, to this day if I see a man that looks like my grandfather, I still pretend it is him — and I am 60 years old!
Now I am doing the same thing with Barry. I keep thinking that maybe the nurses will call and say, “Good News! Barry is well now. Taking him off the medications did the trick, and he is ready to go home and fix everything.” But sadly that is the 6-year-old in me still trying to pretend. In real life, taking him off his medications did nothing except to increase his agitation, swearing and constant pacing. He also refused to shower and hit the staff. The doctors have put Barry back on his old medication regime.
Recently, I’ve been thinking a lot about how loved ones find a way to cope with someone who is so sick. I realize now that it helps to think like a 6-year-old.
Yes, And yes….Caring for a loved one with this kind of illness does not make a person exactly clear thinking. I remember buying a book about reading Brain Scans and holding one of Paul’s up to the window. Yes, I was going to figure this out and cure him…Even after he was dead, for nearly a week I spent my evenings researching a cure for him. And I think part of oneself understands what is going on, but the mind is trying to protect itself, I guess.
I don’t think I understood it as clearly as you seem to, when it was happening…It does seem to help to think like a six year old.
But it will not last forever. That’s the good news and the bad news. Keep breathing.
Sending you love and hugs, dear one!
Nancy…everyone has a journey…your story plays out thru your mind as your story books….and I think with our loved ones, we all have those moments that we think there must be a fix or a magic pill, or someone to wipe this off, or give us a do over, or what if… You help us all …going thru this thru your journey …to know we are all ok having the same feelings. Stay strong and let those of us who care so much about you know when you need to be picked up off the floor…. You are not alone. And we can hold you hand too.
When my father died suddenly of heart failure at the young age of 52 there was a parade of well-meaning friends in and out of the family home in Edina. All were there to express condolences, and to show they cared in whatever way they could. But the one comment made to my mom which she shared with me because it meant so much to her, was “Oh, Nancy, think what a help you will be to the rest of us when and if we go through this.” And so I would like to thank you ~ another Nancy ~ for sharing so bravely with us, so if and when the time comes for us to walk this journey with a loved one we will have some bit of a guiding light. Hugs.
Nancy, It is your love for Barry that keeps you hoping he will come back to you as his old self. I am sure if he could tell you that he feels the same way.
Beth-Ann, that is a beautiful thought!
I keep thinking about how wise you are, in addition to all of your other attributes. Love . . .
I’m so glad my friend Dave Geister shares this blog with us. I lost my mother to Alzheimer’s on 2/9/14 and I can completely relate to everything you talk about. It was hard to wrap my head around the fact that no one gets better with Alzheimer’s, it is a downward slide…steady and constant. It was also hard to handle the meds really ending up taking away her mobility…well, the meds in conjunction with the disease. But they kept her at peace and from fighting her care. Thank you for sharing your journey. Hugs to you!
Nancy, Thanks so much for sharing your journey. The Alzheimer Journey is the worst, because you loose your loved one early on and then things steadily take a downward journey. Then you loose them physically. All along the hope is that something magical will happen and you will have that loved one back like they use to be. My Tom still had his sense of humor until the end, which was a blessing for me and especially my granddaughters. I was also lucky that Tom never went through the personality change. I marvel at all you do, but keeping busy probably is a blessing for you. Know that you and Barry are in my thoughts and prayers. Take care – be strong!
Nancy, hang in there the best you can. You are strong and loving — exactly what Barry needs right now. Jean
There will be a special place in Heaven for the people who provide the care and assistance to Barry, my Dad, and others like them in those units. Barry is safe where he is, and that is one less thing for you to worry about. Please let me know if there is anything I can do to help. Kitten
Nancy,
As I sat reading this I had tears running down my face and kept thinking about the journey you have been on and all you are dealing with. I wish I had a magic wand or at least magical words for you, but I don’t. I always have been amazed at you as a woman and all that you had to balance with your work, family and friends and now how graciously you are handling all of this. It is very apparent of your love for Barry and I wish that everyone could have that with someone. Nancy I am keeping both of you in my prayers and asking God to hold you close and hold you up when you think you can’t go on.
Sending you lots of love and hugs,
Judy