In the midst of things…

My family and I are in the middle of the 5th month of our spending moratorium. After cancelling our vacation,  we seem to always search for that silver lining. We have our days that we feel sorry for ourselves and mope around the house, whining that we’ll never go on a nice vacation….ok, I’m the one that really does that….but other days we try to look on the bright side of things.

For instance, with our tax refund this year, we were able to not only pay off the credit card but one of our loans that had some old debt on it. We paid it off a year early! And with that bit of extra money, we’re hoping to pay off this new car loan by January.  So what does that mean for us? Does it mean we can ease up on the moratorium and try to have a little fun? Well…not really.

Since we paid off the loan, we were able to loan two of our family members a little money (just $20 or $25) when they needed it and it didn’t hurt us too bad. That was a good feeling, and they both paid us back which is even better! But for the past few weeks, I’ve spend more on groceries than normal. I haven’t been as diligent. I kept saying, “Oh, we’re good! Look at all we’ve done!” And then I felt the squeeze. My husband didn’t work 40 hours one week, we both had doctors’ appointments the next week, two of our cats were due for the their shots…you get the picture.  That’s when Holly started freaking out.

I started getting grumpier than my normal. I started interrogating my husband on what he bought and where. I ate cereal for supper more than once, trying to spread the meals out a little more for the rest of the family. Of course, then I gorged myself on chocolate chips on those nights because it felt good and I needed to feel good. Which made me depressed about my weight, my lack of running and the fact that we were low on chocolate chips.  See that nasty downward spiral?

But then little things started to pop up that made me happy.  Little things that were really big things. Like my mom taking my son and myself to McDonald’s for lunch. We went INSIDE the building. We sat INSIDE! Last week Mom went grocery shopping with me. She actually went INTO THE GROCERY STORE. This is really big. I haven’t been inside a public building with my mother in over a year, except for hospitals and doctor’s offices. When we went into the store, she folded up her walker, put it in a cart, and started pushing it all through the store. And I mean all through the store! It was awesome! Really, really awesome. She recognized a few people, she remembered what was on her grocery list, she knew what was going on. It was FANTASTIC!  True, she was wearing the sweat suit she seems to want to wear all the time and she didn’t have her teeth in, her teeth that were never found, but who cares? She was aware and coherent and cruising along. It was a good day.

Other little things that have made me happy? Watching the Oscars with my brother. It may have been in the hospital, but he made me laugh hysterically, like he always does. And right now, at least this week, he’s feeling better and he’s home. So that makes me happy. Hanging out with some of my family this weekend, just having lunch, chatting, watching The Love Boat–all made me happy. Listening to my child spell words for his father–that not only made me happy but amused the hell out of me. Watching comedians on Netflix, laughing at a joke my husband told, talking with some of my favorite people via email and Facebook–all of that made and makes me happy.

There really are silver linings out there, somewhere. Not for everything for sure, and certainly not all of the time. Don’t get me wrong, I’m not all sunshiney and farting rainbows, people! I’m not always happy when friends they tell me about their fantastic vacations they’re planning or what incredible (and incredibly expensive) outings they’re going on with their children. I can get downright pissy. But when I come back to myself, I remember that this debt business isn’t their fault. That’s all mine (and my husband’s). And although I might think snarky thoughts and hope they get into debt because of their fabulous vacation, I usually snap out of it and wish them well and try not to be such a bitch.

Then I go off and start looking and searching and hoping for the bright side, the silver lining, the good stuff.

It’s usually out there.

So let’s go find it.

 

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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.

 

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.

 

 

 

Becoming My Mother

motherdaughterThere’s no doubt I am a lot like my mother. We look alike in some ways, have many of the same mannerisms, same obsession about making things neat, same love of vanilla ice cream. As I watch my mother’s mind deteriorate, I can’t help but wonder if we will also share the same fate.

I’ve been thinking about this a lot lately, particularly in the last month when my husband found my vitamins in the refrigerator. I’ve also had more of those moments when I just cannot grasp that one word I’m looking for. Do you know what I mean? You’re having a conversation with someone and all of a sudden you draw a blank on that one specific word. You haven’t lost the thread of the conversation (yet) but you can’t think of that one friggin’ word.

I often find myself in this situation when it comes to naming actors. I’ll be talking with a library patron about a particular movie and if I can’t remember the actor’s name, I start googling the other film titles I can remember just to narrow down the possible name. It drives me bananas!

And then on Friday, I got this weird vision impairment thing for a few minutes and it made me stop and think, “Shit. Do I need to go to a neurologist, too, and find out if my brain is already going wacky?” Maybe. Maybe I need to be a little cautious and make sure I’m ok. And maybe I’m just freaking out about my mom and worried that I’m following down the same exact path she did.

My sister and I often talk about how doomed we are. On nearly every branch of our family tree, a female member had dementia or Alzheimer’s disease–both of our grandmothers, at least one of our great grandmothers, and all three of our aunts. This past weekend there was an incident with my mom, and I asked my sister, “Is this what will happen to us?”

Not only is it frightening to watch my mother go through this horrible decline of her mental and physical health, but to think that my sister and I may have to go through it, too. Will my son be on the other end of the phone line, listening to me cry in confusion and frustration, just like I listened to my mother? Will he have to take me to my doctor’s appointments and tell them what is really going on in my life, because I have no memory of what happened the day before?  The thought of putting him through all of that gives me a belly ache. And yet, I am already turning to my 8-year-old son and saying, “Bri, what’s the name of that song? You know, the one with the guy that loves the girl?”

I can only hope that in the future, I’ll realize my decline, realize that I could harm myself or someone else. Having someone tell you that your memory is getting worse, doesn’t always do the trick. It makes you want to prove them wrong. Admitting that your mind isn’t what it used to be is a *very* difficult thing to do, and when you fear losing your independence, it’s nearly impossible. I can only hope that I’ll have the courage to admit to myself and to others when my mind is failing, and get help before I lose my chance to make my own choices.

This is what I fear for my mother. I want her to still be able to make whatever choices she wants to, to make her life her own. But things are getting more and more difficult and I feel like her time is running out to make those choices. We had several conversations in the past and papers have been signed, but not everything has been said. There are still things to be done and decisions to be made.

But…not yet.

Right now it’s just time to take deep breaths, to stay calm.

And to hope.

I no longer know what to hope for, but hoping for something good seems like the way to go.

So let’s do it. Let’s hope for good and see what happens.

 

 

 

The Memory Game

Did you ever play Memory as a kid? I always loved it when I could remember where that one matching card was, especially that damn red apple. If I played with other people, I, of course, would want to win and would just hate it if someone beat me. And then, as an adult, I played with my little boy. All I wanted was for him to win, to feel good about himself. I never “let” him win, though. I would try to send him telepathic messages, telling him where the fish was or the beach ball, but rarely did that work.

memory

Last week, I took my mother to the neurologist, to play a new kind of memory game. I again found myself willing someone else to “win,” telepathically sending her words that began with the letter “F” and giving her numbers to count backwards with.

It was extremely difficult to watch. With each question, Mom was getting more and more frustrated and very tired. She would cover her eyes with one hand then rub her forehead and let out a big sigh.

My siblings and I know that sigh VERY well. It’s her “I am so sick and tired of you and what we’re doing and the best thing to do is for you to leave the room” sigh. And that’s what I wanted to do. I kept looking at the door. Maybe pretend I had to use the bathroom? I wanted to run away from that room and tiptoe back to it an hour later.  That’s what I used to do as a kid and my “fight or flight” response was screaming at me to just leave.

But I couldn’t.

So I stayed. I silently mouthed to the doctor that Mom was getting frustrated. The doctor nodded and she started to ask Mom questions about her children and grandchildren instead. Just a conversation. It worked…for a few minutes. Then the doctor slipped in a few other memory questions but Mom caught on after a bit, stopped talking and just stared at the doctor. It was so unbelievably uncomfortable. The neurologist was getting “the eye” from my mother! I’m sure that woman would have burst into flames if my mother had anything to say about it.

Thankfully the testing finally ended, or rather the doctor stopped trying. She wasn’t getting anywhere with Mom, so she did a short physical exam instead. Funnily enough, Mom relaxed at this point. This was something she was used to, something she was familiar with.

Unfortunately, my poor mother not only has a hurting brain, but her body is a mess, too. She smokes and this doctor, the very first ever, told Mom that her lungs sounded horrible. I was almost happy she said it, although it’s not going to make any fucking difference now. She’s 69 years old and she’s going to smoke a pack a day. Period. Diabetes is also corroding her body–her feet, her legs–I had no idea things were so bad. I should have, though.

Once the entire exam was over, the neurologist recommended a few physical tests (MRI, EEG) that will need to be done in the next week or two. We won’t go back to see this doctor until April, but will hopefully have more answers before then.  She did toss terms at us like frontotemporal dementia and transient global amnesia due to mild strokes that might explain some of the strange behaviors my mother has exhibited. But nothing is really known right now, except there are serious gaps in my mother’s memory and in her ability to understand or follow instructions.

I don’t really know what will happen now. I’m relieved that we’ll have some answers to why Mom acts the way she does. Sometimes all this guessing we’ve been doing gets exhausting and honestly, it’s just foolish. My family and I can look at our grandmother and our aunts and get a very good idea of what’s happening, but still not have any concrete answers or facts. With these tests, science can at least tell us why she can’t remember where she put her teeth and possibly, how much worse her memory will get. Although I suppose we all know that answer.

You know, I have so many wishes swirling around in my heart right now. Wishing I would have made my mother see a neurologist four years ago when things started going wacky. Wishing I would have told Mom’s doctor about her feet when I got a glimpse of them last summer. Wishing that Mom didn’t need me as much as she does. Wishing that I could tell her how scary it is being her parent and that I’m afraid something is going to happen and it will be my fault.

And wishing, always wishing, Mom was my mom again.