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.

It's a read your fortune cookie kind of day.....

I've been struggling with how to muster enough courage to pull John off of medications that do not relate to Lewy Body. These would be the medications related to Orthostatic Hypotension. This has been the culprit responsible for more trouble earlier on in his journey into hell with Lewy Body.

Today, I finally did it. John's daughter came to be sure I didn't lose my resolve. I asked for a hospice eval and to have his medications revisited. We're moving from palliative to hospice.

I have always felt doctors were wrong to prolong life when there was no quality of life and no hope. Now the shoe's on the other foot and I must make a decision.

John has been quite clear in wanting to die. He started saying this a lot since last summer. I believe him to be quite lucid when he says it. He said it again last night.

Two nights ago was a very tough night. According to my lawyer, if I were to put John on medicaid, I would have to cash in $86K of my retirement funds - which means all of it when you include penalties and taxes. I decided not to do that. I would bring him home before I allowed that to happen. John would not approve.

But yesterday morning, my "Message from God" (FB app) said this:

"On this day of your life, Susan, we believe God wants you to know...that today is a big day for you.

Yes, today. Keep your eyes open for a message. It might come in a shape of a bird flying overhead, or a graffiti on a wall, or a phrase said by a passerby, or... Whatever shape it has, this message has been trying to reach you for years, and today is finally the day. Keep your senses open. "

How do these apps know? Obviously, they're like fortune cookies or horoscopes. You can read whatever you want to in them. But, I think John was the messenger. He was giving me one final ok....

God is watching over the two of us. Make no mistake. When things seem to be falling apart, I feel His strength in ways you cannot mistake. I'm not somebody who reads the Bible over and over again. I don't quote verses from the Bible. But I do know that God is giving me the strength and courage I need. He sends it in so many forms and it is like a security blanket laying over me.

A day in the life: Life in the nursing home also involves death...

A day in the life: Life in the nursing home also involves death...: "I'm three for three today. My colonscopy was perfect, I was released from PT and Tom C was released from his illness today. One of the thin..."

Life in the nursing home also involves death...

I'm three for three today. My colonscopy was perfect, I was released from PT and Tom C was released from his illness today.

One of the things that has caught me by surprise by nursing homes is how attached I get to the other residents. When John was placed at his first nursing home, he was only there for two weeks and yet I cried all day when we left.

We've now been at Jones since the middle of August. I know these residents like they are family and I know their families like they are family. I have supper with them every night. We all greet each other like it was the set of Cheers..."NORM!!!!" Where everybody knows your name...and we're always glad you came.

Well, we all know why we're here. And if we'd think about it, we'd know our loved ones are only going out one way. But we DON'T think about it. We have life and we celebrate it each night. We laugh a lot - surprisingly. The residents themselves are a source of huge amusement. For instance, tonight while dinner was being served, the movie they were watching was "50 FIrst Dates". At one point, Adam Sandler is telling the walrus goodbye, he said "and don't forget to wear a condom, or a garbage bag in your case". Well, Mary Lou laughed quite loudly and I started to laugh. But then she said "I don't know what a garbage bag is"....Obviously she KNEW what a condom was..At the same time, Lorraine is saying that her hand is no longer working, as she continues to use it. This often happens to Lorraine. Sometimes her fingers disappear, too. One night she was explaining this to Mary Lou and asked Mary Lou if she had all 10 of her fingers and Mary Lou says "I don't know, I never checked"...I'm telling you, if Nora Ephram spent time in our dining room, she'd have another best selling movie.

So, when Kay passed away a few weeks ago, I was sad, but I'd known it was coming. Kay used to hold John's hand and walk the halls with him. Tom A. had told me one night I could take my wedding band off now. She always gave you a blessing when she talked to you. "God loves you. You are a good person." Then she switched to Greek and the rest was lost. But we knew it was coming after she fractured her hip.

A week later, Mary died peacefully in her sleep. Without warning. Her daughter was a regular at the dinner table. So, we lose two when one dies.

But this morning, Tom C died. He'd been slipping quickly these past few weeks. His wife, Sophie, had become such a good friend, confidant, blessing, laugh producer, blessing giver, meal provider, hug and kiss provider. She and I had so much in common. Besides both of our husbands having dementia, we both love to cook. Except that she's a real cook; I'm just a pretend one. She's also a real seamstress. So, we would get the residents at our table going and we'd be the receivers of the best gift of all - love and laughter.

Sophie is the one who brought me to hear Anne Bancroft. Her children and their spouses treat me like family. I love them all so much.

God sent me Sophie to ease me into this life. She will tell you the same about me, but don't you believe it. She's my gift. My tears are as much for the loss of her at the dinner table as my sadness in Tom's passing.

My "Message from God" this morning (A facebook ap) said "All is well, All is well, All is well". Like I said, I was three for three.

On finding Courage

Many people have said to me that I am so brave to have a husband in the nursing home. My response to that is generally "WTF?" What are my options? To not move forward anymore?

I just listened to Anne Bancroft, the explorer who traversed both the North and South Pole. She doesn't feel like she was courageous for having done so.

She said the every day things often take much more courage. She got a card from a 5th grader once that
said "I understand how scary a new day can be, I just changed schools."

Anne also talked about how women, in particular, defer their courage. We
often are told we are so courageous and we say "No, no...not me". But Courage
is relative to where you are.

Courage is going forward into a place where you can not see the destination,
putting one foot in front of the other while pulling a 1400 pound sled. Isn't
that what we do daily with our loved ones? We don't know what the day will be
like when we rise in the morning. We've lost our own futures - if that isn't a
1400 pound sled we're pulling, I don't know what is. And yet, we do it. One
step at a time, one foot in front of the other. We whine a little bit (or a
lot) along the way. We seek companionship from others who know our plight. But
we get out of bed, and sometimes, that is the biggest act of courage for a
caregiver.

And having others to help you pull that sled? That's God's gift.

Now that I'm a Nursing Home Spouse

Tonight I read back over all of these posts. It seems like years ago since I wrote them, and yet only about 4 months ago.

My life is different now, John's life is more different. He lives in a nursing home a mile away. He spends his life existing. I spend my days teaching and then going to the home with Miss Xena the Warrior Princess.

John asks to go home regularly. He is often packed when I get there. He sometimes cries. It is a wonderful place, but it is not home. So many times a week we have this conversation about his not being safe at home. Re-reading these posts remind me of what life was like.

My John has left the building. Only occasionally does a glimpse of him break through. Oh, he knows people. He also sees people who aren't there. If I say I saw so and so today, he'll say, "Oh he was here this morning, he looks like hell!"

I miss him so much. I've had some rude awakenings about things he used to do - like our finances, or lack thereof. We've sold the cabin. I've learned things about our medicaid system I wished I didn't know.

But there have been some unexpected bonuses. They are named Archie and Tom and Tom and Marjorie and Lorraine. And then there's Dorothy and Albert. All residents - each one providing more fun then I'm entitled to. And then there's Sophie - one of the Tom's wife. She has become a guardian angel to me, heaven sent to keep me strong.

And so, after 30 years of marriage, I am alone. Both of my boys have left the nest. It's me and the Xena monster.

I struggle a lot lately to find what the hell we're doing on this earth. Why are we here? Is it to wind up like John? Then merely EXIST for the rest of our days? I do know that God keeps sticking people in my path to guide me and comfort me and remind me that I am not alone. And He finds new uses for me, both in the nursing home and school. But I think of how wonderful it is to sit with Dorothy and hold her hand for awhile. Or how sweet it is that Tom A precisely organizes food from his plate onto a spoon to feed Miss Xena. This from a man who loudly proclaimed NO DOGS IN THE DINING ROOM!! IT'S A RULE! the first night we were there. He now calls Xena his little buddy. Even Dorothy talks about Xena even though she doesn't talk much at all.

So is this it? God putting all of these people in my path to give me a sense of purpose if I've opened my eyes to it. Or to remind me that others have it much worse? Or to ease the path for staying there with John...

No answers again, only questions.