What about me?

I have been fighting the dumps this week. Honestly, I think that part of it, is the time of year. It has been dreary and gross out all week, mud season has begun, yet we still have snow on the mountain. What has melted is revealing dog waste, rocks in the grass, broken twigs and trees around the border of the property. Even the mailbox looks pathetic as it leans a little too much to the left.

Maybe it’s the fact that we are in the month of “when all bad things happen”. My heart hurts. People are getting on my nerves. I am jealous and a little angry. I am exhausted. The yard matches my emotions and I want to find a hole to crawl in. Our “affairs are in order” and now we just muddle through from one doctors appointment to the next. Waiting. Watching. Praying. Trying to live and enjoy the time we have left. It’s lonely and it stinks.

He looks forward to coffee and treats. So that’s what I bring him. His world is shrinking. He is lonely, but he doesn’t want to go anywhere. Going to functions is exhausting. People say, “He doesn’t act like anything is wrong.” It is true. He rises to the occasion, then he goes home and crashes. Sometimes it takes as long as a week to get him back to his normal. He silently stares, plays his game over and over on the iPad, and can’t finish any thoughts. He sleeps all the time or he doesn’t sleep. Organs people can’t see are malfunctioning and deteriorating. He looks fine, but what is seen is not what is broken.

This means that MY world is shrinking. I go to work and I come home just as soon as I can. I pray that he is safe, I FaceTime him at noontime, I encourage a nap, and ask for his Bp. I remind him to eat. I tell him that I love him over and over. I teach, go home, then teach, and go home. That is what I do.

Today I wonder if God is mad at me. I look around and see happy families, and I am jealous of their perfect worlds- or so it seems to me. It seems like some people never experience adversity. Everything is perfect- “a perfect little woman with a perfect little man, with a perfect little family, that live in a perfect little house and drive a perfect little car, going to a perfect little job, where everything is perfect.”

I have cried most of the day today. I am sad. Gut wrenching sad. Like it or not, my husband is dying and I have to figure out what in the world I am going to do and I don’t want to. I don’t want to lose my favorite man. I don’t want to have to go on alone. I don’t want to sell the house. I don’t want to move on. I am angry. I am angry at God because he could fix it with one nod, and he is choosing not to. How could anything GOOD come from losing my husband?

Today’s  solution: we went on a hot date to the car wash, then we took the long way to the ocean. We walked the foot bridge, enjoyed the crisp sea air, people watched, and took in some natural D. It always makes me feel better. I have stopped crying, have put some coffee on, and am preparing to go back at it again tomorrow.

I think the thing that is the hardest right now is that I have spent a lifetime making sure that everyone’s needs have been met: my parents, my children, my husband. What on earth am I going to do when it is only me? Who is going to worry about me? People ask me what I need and I have no idea. I’m just sad, angry, scared, and tired, and I cannot stop. I have to take this journey whether I like it or not, and I don’t.

Dear Younger Me,                                                                                                                                          Don’t waste one single moment, because the rug will be pulled out from under you in a split second. It isn’t fair, but it’s going to happen. Get ready.                                                       Be brave, Me


Sometimes Life Stinks

Warning: This is not your typical entry from me…

I’m struggling. I did fine on Thursday when I needed to step up, be strong, and make difficult decisions. I am proud of myself. My initial response was fear and a few tears, but I pulled it together before walking through the front door. I casually and quietly convinced him to go to the Emergency Room. We joked and laughed on the way to the hospital. I even bought him a coffee and a breakfast sandwich.

I learned a lot from the last time. I packed a “to-go” bag quickly, had most of what I needed to stay the night, and had the documentation that I knew doctors would ask for.

I stopped into school that evening to put together sub plans, took care of our animals, and collapsed into bed all by myself.  I didn’t kennel the dog, but I mostly slept despite the empty spot on the other side of our queen sized bed. I was strong and brave, and I was what I needed to be for my children and for my husband.

I presented myself casual yet attentive to the observer. I hovered, asked questions, and listened carefully to doctors. I was determined to find the cause of his extremely LOW blood pressure which was causing him to pass out.

In the end, they gave him a new diagnosis: Orthostatic Hypotension, which is a decrease in blood pressure going from a sitting to standing position. This causes very low Bp, dizzy spells, and black outs. Doctors feel that he was on too much Bp medication and was dehydrated (a side effect of the water pill). As a result, doctors removed 2 meds completely and significantly reduced 2 others.

Then they sent us home.

The problem is that they did not tell us how high to allow the Bp to go before returning to the ER, or what to do about a significant increase in heart rate. They didn’t tell us how to tweak the meds in case he passes out again. They just sent us home with an amended med list and told him to drink a lot of fluids.

In the meantime, I have to go back to work tomorrow and he will be home alone. I’m scared to death that I am going to come home to find him in a pile. I wish so badly that I could just stay home with him: to hover, wait on him, protect him, remind him to eat, nap, take his meds, and monitor his Bp. Mostly, I want to keep him safe.

This isn’t a dementia thing. It is just him. On top of the Bp dilemma, we now have to make a decision on Friday about a beat up rotator cuff. That isn’t dementia related either. It is just him. The recovery time from surgery is 3-6 months, on his GOOD shoulder. He was just released from PT and OT from the stroke in April. It means starting again, while I work every day and hope and pray that he stays safe, and that his pain is under control. So many medical decisions to be made with no relief in sight… and then we have the dementia.

So, no, I am not alright. I am not okay. I don’t mean to be a Debbie Downer, but I am tired, frustrated, terrified, and sad. I am trying to keep a positive attitude, and to do the best job I can in the workplace. I am trying to manage the finances and keep everything done in the house. However, I feel like I am in the middle of a cyclone that is spinning endlessly and going downward into the center of the universe. This isn’t fair and it stinks, and I hate it.

The bottom line is that I don’t have a choice. This isn’t going to go away. It is a road I have to take and a burden I have to bear. I’ll just keep moving one foot in front of the other and do the very best I can. In the end, I am determined not to have any regrets, and I always want to be a good example of a a faithful servant of God.

I won’t give up because I love him desperately, and he’d do it for me. But, please pardon me if I tell you “it’s not okay”.  Just hug me, offer me coffee and a sweet treat, and agree with me. Sometimes life just plain stinks.














Holiday Let Down

Whew! We made it. As usual, I have the Holiday Let Down Blues. I don’t like them. I fight them. But I get them every single time on the day after. I wonder if I am the only one?

12376545_10207398533035580_2691794604803655604_nIt seems that I spend so much time and energy preparing for big days, and the day after I am not sure what to do with myself. I fight buyer’s remorse. I try to refocus on the house responsibilities, school, doctors visits, and what is next. I sit in my PJ’s a little longer, take my shower a little later, listen to music on the radio, and reflect. I hope that my family enjoyed their day, that the gifts that we carefully selected were just right, and I overthink their reactions of the day before. I know I need to cut it out, but I can’t.

I wonder what next year is going to look like. I try not to think about it, and deny it to anyone who asks, but I can’t help it. I think about how this year was a little more difficult and I wonder how long he will make it amidst the Christmas chaos next year.

Writing about it helps.

We just had to find a new home for the dog: his Service Dog. He has become aggressive toward her and goes from 0-100 so fast. He yells at her,  has to be stopped from throwing things at her, and wants to “smash her head,” when she barks or gets into the trash. He chases dander all day long, minds her smell, and rarely gives her attention. This breaks my heart. This dog, the one he begged to get last April, was supposed to keep him calm and provide him company. She is a good dog, easy to train, and will do anything for a “good girl”. Is that part of my funk? I think so. The dog I fought about getting, got ahold of my heartstrings and I miss her.

We wrote a book together and gave away 25 copies for Christmas. I have been a bit surprised by the response. When I shared at school, I received very little feedback, but I got a few nice “Ata Girls”. When we shared the book on our support site, the Administrators took it down, saying that we couldn’t “solicit our book”. We don’t get any royalties and we sited the support site in our Acknowledgements. I thought they’d appreciate that. We signed copies for our family who showed little expression. Maybe they just don’t know what to say. It was just weird. I just mailed some to my closest friends. I wonder what kind of a response I will get from them? I had thought I might do another book at some point, but from the response, I am thinking that I won’t. As far as we know, only 2 people have read it from cover to cover. One, we have never met, the other, the cousin that took the dog. Both had kind things to say, but what about the others? Part of my funk?

He gets frustrated with holidays, because he wants to do things for me and he can’t. He relies on others to drive him. He doesn’t have access to money. He wants to spoil me but can’t. This year I took him to two places with store credit cards. He picked out a couple things for my birthday. It is a significant one this year and he wants it to be special. So he picked out a very expensive gift that we will be paying on for a long time. With tears in his eyes, he said, “It isn’t every day that you turn 50.”

12036834_10206938608617757_8337194601233077145_n-1Well, the dog didn’t work out. She couldn’t get along with the other dog. She is an Alpha and bossy. Shocking. So are the rest of the women in the family! It took less than an hour to put the run back up and put all her things back in the house. He seems disappointed. I think he had resigned to the fact that she was gone and now that she is back, he doesn’t know what to think. I think he is caught up with the fact that he let her down. I, on the other hand, am glad she is home after three LONG days away. I missed her so much.

I wonder if part of my mood stems from the fact that he is absolutely pooped. The stimulation from the past couple days has left him exhausted. He fell asleep on the way into town for dog food and rarely spoke when we got home. The new normal in my life means that I have to watch him carefully, and monitor his behavior to find when I need to remove him from noise and high activity. The highest priority is to make sure that he gets his medication and that he is safe. The problem is that Dementia is not linear. Just because he can’t do it today, doesn’t mean that he can’t do it tomorrow. And, just because he can’t remember it at this moment, doesn’t mean that he won’t remember it later. The only thing that he consistently cannot do is tie his shoes. It seems that he has lost that for good.

I can’t help but wonder about next year, even though I tell myself and others not to think that far ahead. I wonder how fast this thing is going to progress, even though a big part of me doesn’t want to know. I am sad, but not all the time. I live for the day most of the time, and I don’t really plan, because I can’t. Then I get mad, because this should not be happening at 50 years old.  We are way too young for this mess. I am angry that the kids are getting the short end, and so am I. I really want to lay down and throw a great big  fit. Then I think that I am being ridiculous and I need to knock it off. And I do.

And then look what I found…