The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!

Lost and Found

If I’ve learned anything this past week, it’s that Alzheimer’s Disease slowly eats away one’s independence, dignity, eventually humanity. It not only destroys the individual, but it injurs and scars the caregiver and the family.

Last week ended with me losing my mother in a hospital (she can seriously boogie with that walker!) and also discovering at least 6 months worth of unopened mail in her home, including financial matters that should have been tended to. And this week began with me visiting the bank and crying at the desk of a bank employee.

Today I told more people about my mother’s condition. I told people that may only be on the periphery of her life, but ones that need to know why she doesn’t seem like her typical reliable self. My mother’s reputation has been in jeopardy for the past year, and maybe that doesn’t matter to some. But I know if my mother was in her right mind, it would matter to her. She’s been a respected citizen of our little town for nearly 50 years. She’s always been responsible. She paid her bills on time, mostly obeyed the speed limit and every single person I talk to says, “She’s such a sweet woman!” I don’t want anyone thinking less of her because I didn’t pay attention to that growing pile of mail in her living room. If I had done my job, I would have helped her open that shit at least two months ago.

mailBut I didn’t. I didn’t want to. I was afraid. In the back of my mind, I knew my own responsibilities for Mom’s care would increase. I knew I would have to have uncomfortable conversations with Mom about finances–her last bit of true freedom. So I didn’t do anything. I didn’t do anything until….well….until I did.  I had to stop putting it off and just ask Mom if we could organize her mail a bit. But something so simple is still not easy for me to do. To this day, I still dread the thought of my mother being angry with me. She put fear in all her children, and although I can’t speak for my siblings, she put the fear of disappointing her, in me.

So now when I need to ask my mother permission to do something, like open her mail, I’m waiting for my mother to bite back, to tell me “no” and that she has everything under control. But she never says that. Not anymore. She knows she no longer has everything under control.  And as much as it pains me to say it, I guess that’s my job now.

Looking For Motivation

Two winters ago, I gained 7 pounds due to less activity and too many goodies. By the summer I had lost a few of them, but this winter I gained them all back with an extra three for good measure. That’s 10 pounds extra of Holly that I wish I didn’t have. And yet…I can’t seem to care that much.

All of my pants still fit, but most are much more snug than they should be, thus giving me that lovely extra-large muffin top. I cover my squishiness up as best as I can with layers of turtlenecks and sweaters. Winter in Maine is good for some things! And even with all of that, I can’t seem to get my butt on the treadmill or outside more than I do. I’m only running 6-9 miles a week and attempting to do a smidge of weight lifting a few times a week, too. You might be saying, “Hey! That’s great! At least you’re doing that much.” But it’s not really great. It’s not enough, especially since I’m eating anything I want and not giving a damn. Yes, I am moving, but I’m only one step away from Couch Potato Kingdom.

There was a time when I would faithfully work out 6-7 times a week, even though it stressed me out to do so. I justified it by saying the physical activity did me more good in the long run. But now, just the thought of trying to squeeze 6-7 workouts in a week, makes me want to cry. I give myself Wednesdays off so I can volunteer at my son’s school library in the morning and I give myself Fridays off so I can go to my mom’s in the morning and fill her pill container and check her blood sugar and just make sure all is well.

So what are my excuses the other days? I’ll squeeze in a 20-30 minute workout most mornings, but honestly, I have no excuse for not running on the weekend. I have the time but I’m just so apathetic. I have no doubt that part of my apathy stems from my mother’s illness, my father’s newly discovered memory loss and even our lost vacation. But I can’t keep going on like this because I know my physical health will suffer and my mental health is already deteriorating. The winter affects my mood anyway, so the lack of exercise makes me feel even sadder than usual. I tend to fix that sadness with more reading and chocolate and wine. And that, my friends, is asking for trouble. (Except for the extra reading. That’s always good, no matter how you look at it.)

My friend, Aymie, lost 50 pounds last year and ran over 500 miles. She looks fantastic and you can tell she feels great, too. My friend, Moriah, is on a journey to lose weight and to get healthy. She’s lost 14 pounds so far, and although I know it’s been tough, she’s doing it and I’m so damn proud of her. And yet why can’t these women motivate me to get my ass off the couch? I’ve been inspired by these women and others in the past, so why not now?

Maybe I need a goal. Something to shoot for. Use a website like stickk like I have before? Cover my Facebook feed with memes of encouragement?

Maybe I just need to hold on until spring when the temps are warmer and we’ll see the sun more. Although I think the zipper on my jeans probably can’t wait that long. I really need to find something now to make me care about my level of fitness.

What do you do to help with the winter blues or with the inactive times in your life? Is there something that helps you get up and go? What motivates you to take care of yourself?

As usual, any and all suggestions welcome, my friends!

Just Awful

Yesterday morning, as I sobbed and hiccupped on my couch, I told my husband I was a horrible caregiver. “I’m too selfish to do this,” I cried.

Just when I think things are ok, they’re really not.

My mother has Type 2 Diabetes, and before she had dementia, it wasn’t a huge problem. She didn’t eat very well, but she took her medication and it was manageable. Then we realized that she hadn’t been taking any medication for nearly 5 months, things were bad. So my caregiving duties were upped a bit and I started religiously visiting my mother at least once a week to fill her pill container and to chat and just see her. Yet in the past month, the situation started to decline. Mom just hasn’t been taking her medication. Maybe twice a week, but that’s all. I don’t know why, but something changed. The first week it happened, I hoped it was just a bad week. And the next week she did take all of her meds, so I thought indeed it had been a snafu. But then for the next 3 weeks, she only sporadically took everything she needed to. And only once did I say, “Mom, you really need to take your medicine, ok?” But why? Why did I only ask her once? Because although I am 43 years old, I still don’t want my mother mad at me.

I am very rarely the recipient of my mother’s wrath. My sister has been the unfortunate one in that scenario and it can be awful. You can practically eat the silence that invades the room when she’s angry. It’s thick and dark like molasses. Or the look she gives you. Christ, a person could burst into flames if they get that look.

But I mean, really, who wants their mother mad at them? No matter what age? But….I know I need to ask my mother if she’s taken her pills…and I need to ask every day….which, in my opinion, is completely awful.

This all came up at Mom’s doctor’s appointment a few days ago. Her glucose levels were off the charts and Mom’s healthcare provider asked my mother if it was ok if I asked her to take her pills. “I know you care about me. I know why that’s the reason you’re asking, so it’s ok,” Mom said. So that’s what I’ll do.

And then I get a late night phone call from the on-call doctor at Mom’s doctor’s office. He tells me Mom’s glucose levels are in fact over 600 and she should go to the ER and get insulin. So…here I am, 35 minutes from where my mother lives. I know that if I call her and wake her up, she’ll be confused and probably hang up on me. If she’s still awake, more than likely she will refuse to go anywhere because it’s late at night and she’s not going to wake her friend and have him take her. So…I don’t call my mother. I wait until the next morning and explain the situation. She says she’ll go to the ER. She then calls me back 10 minutes later, asking what she’s supposed to do at the hospital, what to say, what will they do. Then calls back one more time to say she’s leaving for the ER, but says, “But I’m not staying!” I reassure her that they’ll probably only give her an IV for fluids and some insulin then she can go back home. Which is what they did. They brought her levels down significantly and she’s ok.

But I burst into tears after that last phone call. The self-doubt and guilt completely overwhelmed me. Should I have called her the night before? I could have driven over there and taken her, right? Why didn’t I at least give her the option the night before? I want to say it’s because I knew she wouldn’t go. But I don’t really know that, do I? I was tired, I was on my way to bed, and I didn’t want to deal with one more thing.

Do other caregivers go through this? Do they do stupid, awful things and continuously wonder what the hell they’re doing? This is so much like being a parent, but not. I feel like I have the same amount of responsibility as with my child, but yet more urgency and less power. I am still my mother’s child. I don’t want to make her angry or upset and yet I don’t want to fail her, either. And if I don’t step up my game, I think I’m going to do just that.

 

What will 2017 bring?

My friend, Leanne, was raised with the belief that what you do on New Year’s Day, you will  do all year long. Today I ran outside for the first time in a month, baked biscuits, ate fresh veggies and homemade (by me) baked beans, played board games with my family, called my mom and listened to an audiobook while doing dishes. It was a lovely, relaxing and satisfying day. If my entire year could be like this, it would be the absolute best year of my existence.

But we know that’s not going to happen, right? More than likely, this will be a year of turmoil. In the United States, we will have a new president in just a few weeks and many of us are worried how his presidency will affect our lives, our country and our world. I can’t say I have a lot of good feelings about this, so I’ll just be watching, listening, hoping and acting when it seems right to do so.

My mother’s health is still in decline. We had a pretty good autumn, but just in the past month her memory, weight, medicine consumption and hygiene have all diminished. I’m not quite sure what to do yet, but have appointments coming up that might help us.

Unfortunately my father is now losing his short term memory, too, but no one seems to know why. And now that he’s refused to see any more doctors, we may never know why. “As long as I know who my wife and kids are, I just don’t care,” he said. And honestly, I don’t blame him. He’s 75 years  old, is a recovering alcoholic and has been morbidly obese for much of his adult life. He’s amazed he’s lived this long!  My brother’s health is not fantastic, either, but still better than two years ago. We’ve been living on hope and good thoughts for this long, so why not keep going?

I have to believe that 2017 will not be completely horrendous. My son will turn 10 this spring. Double digits!!  My husband and I will celebrate our 20th wedding anniversary in the summer. My sister is getting married in the fall. My husband turns 50 on Halloween and if the spending moratorium keeps going well and the car holds out, we will go on our lovely Disney vacation in November. I have several colleagues having babies this year, friends are writing books and creating art, and Star Wars: Episode VIII comes out in December. Some good things WILL happen.

happy-new-year-2017-poster

Now for a resolution. Last year was probably the first year I didn’t have a resolution. I had wishes and dreams for my family and friends, and unfortunately not one of them came true. But this year, in tandem with a movement being created by the Pittsfield Public Library and the Heart of Pittsfield called “The Year of Kindness”, my resolution is to carry out an act of kindness every day. That’s 365 acts of kindness. Minimum. As I told my family about it this morning, I said that my first act of kindness was actually to myself. I went for an outside run that was long overdue. My husband thinks that’s stretching the definition of an act of kindness, but since I’m rarely good to myself, I decided it was ok. (I also wrote a little note to a fellow colleague and complimented her on her writing and how awesome I found it to be. That could be considered an act of kindness, too.)

What about you? Do you have any good thoughts about the upcoming year? Any resolutions? Suggestions for acts of kindness? Would love to hear about your hopes and dreams for 2017.

 

 

The Right Stuff

Taking Mom to her neurology appointments are emotionally exhausting affairs. They make me feel very uncomfortable. It is obvious that in this particular office, I am my mother’s parent. I am asked questions about her health, her memory and the level of her confusion.  Don’t get me wrong, this is done in a very respectful way. The doctor asks my mother if it’s ok to ask me questions, and so far, my mother has always replied very happily, “Absolutely!” I think she likes that I’m in the hot seat before she is.

Then the doctor turns to my mother and asks her a few general questions about her health or her habits before getting into more serious memory testing. Meanwhile, I sit diagonal from my mom and stare at the floor. I look up occasionally to see the reactions of both the doctor and my mother, but mostly I just try to shrink into myself and disappear. This seems like such a private encounter to have to witness. It feels like I’m watching my mother be interrogated and she appears very vulnerable during these interviews. Sometimes tears run down her face while she answers the questions. I desperately want to leave the room while this is going on, but I have to stay. I give the doctor clues when Mom’s answers are not true or just a bit off. Like today. The doctor asked Mom if she ever goes to the library to get reading material. She book-mobilereplied that she didn’t, but the bookmobile comes around once a month.

Ummm…..what the? We haven’t had bookmobiles in this area for about 40 years. No joke. It was such a random thing to say. I was surprised she didn’t mention the library where I work. But something about that bookmobile memory was just floating around in her brain and it popped out. So bizarre.

Yet most of Mom’s other answers to the variety of questions? FANTASTIC!  At the end of the doctor’s interview, she told my mother how impressed she was with how she did. At this point in the year, Mom should have been on this Alzheimer’s medication for 6 months. But due to the snafu we had this summer, she’s only been on it for a month. The doctor knew about this and yet Mom’s memory and level of confusion had improved tremendously since January when she initially saw the doctor. Let me say that I love this neurologist. She’s always brutally honest, there’s no sugar coating for this lady, and yet she conveys empathy and compassion.  She told us that she realized that last January’s appointment could have been a particularly bad day for Mom and today could have been a particularly good day. But even with that, Mom was more than keeping her own. She was actually improving. The Aricept that Mom is taking typically just maintains people’s memory loss, or delays the advancement of the loss, but in 10% of the patients who take it the medication improves the patients’ cognition. The doctor said that Mom may actually be one of those 10%.  YES!!

*big smiles and clapping hands*

I know that everything can change very quickly. I know that most likely, there will be a day that my mother will not know who I am. But that day isn’t here. Not yet. And it might be just a little further off than it was before. And that, my friends, is reason to celebrate.

Three cheers for a good day!

 

Duped

What do you do when you feel betrayed by someone you love? Do you get angry and lash out at that person? Do you stop talking to them? Or do you try and discuss the situation and attempt to forgive?

How about if that person has dementia? Then how would you react?

Today I took my mom to an appointment with her doctor. This was no big deal, just a quick check up to see how everything is going. The doc decided to check Mom’s blood sugar since it had been a while, as well as her A1c number. (If you’re not diabetic or don’t know one, the A1c number is basically a test to show how your blood sugar levels have been for the past few months. The test should be done every 6 months, but possibly every 3 if things are not great.) First the nurse did a quick test of Mom’s blood sugar–it was over 300.  For an average person, 100 or below is good. Then she tested Mom’s A1c. A 6 or 7 is good, and Mom’s was above 13.  In other words, it’s a shit storm.

After a little investigating and questioning both Mom and myself, the doctor discovered that Mom’s meds should have needed a refill at least 8 months ago. EIGHT MONTHS. The doctor turned from her nurse to look at both Mom and me. She tilted her head and had this smug yet pitying look on her face. I wanted to smack that look right off her face. Was I defensive? You bet I was. I fucked up, but I wasn’t going down alone. “So…how often are you supposed to check Mom’s A1c?” It had been nearly a year since they checked it, so we all fucked up.

Now the question was, why was her blood sugar so bad? Was she eating well? Probably not, but that’s a given. Was she taking her medication? Mom certainly thought she was, as did I. That’s the one thing Mom had always been so good about was taking her meds. Or was she? Did I just believe her because she’s my mom and she’s so damn convincing? Or because I didn’t want to take on any more responsibility?

JACKPOT! Finger on the nose!  You got it, Holly!

I wasn’t ready.

So. After this visit, I took Mom home and we went through her medications. She actually did have some of her diabetic medication left from over a year ago, which means she only took it sporadically. But her other meds? Oh my god, her other meds. Like the pills she takes for dementia?

Not one pill had been taken. Not one. In 5 months. Not one.

I am an idiot. I am not a good caregiver. It’s obvious to me now, in fact, that I suck at it.

wrong

I’ve wanted my mom back for so long and kept hoping things would just stay at this even keel for years and I could keep pretending that things were good and I was just her daughter and not her housekeeper or nurse or parent.

I have to stop thinking that way now. It’s all a bunch of damned excuses!! I have to suck it up and help her.

I don’t blame my mother for this. Not at all. For just a moment I felt duped. Like she had stopped taking her medications on purpose. But that feeling only lasted a moment. I knew it wasn’t true. I knew the true deceiver in this situation was me. I felt a betrayal, but it was on my mother’s behalf. I didn’t keep her safe like I was supposed to.

You know, I realize how selfish I’ve been and still am. Even today after all this. I know I need to go over to Mom’s place once a week and make sure her meds are all set and ready to go for the week. It’s not a huge deal. It means either I need to take my son over on the weekend after his soccer game or skip a morning exercise routine during the week. When I say it out loud, it’s so little I’m giving up to help her…but why does it feel so big?

I feel like I’ve taken one more step closer to….I’m not sure to what or to where. Maybe just feeling like I’m more of a parent now? Like before I was parenting a teenager and now we’ve gone backwards and it’s closer to parenting a Kindergartner?  Or maybe it’s because it is another step.

It’s one more step towards the day my mother won’t know who I am.