guilt

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1096 Days

For several days now I’ve had this stomach ache. You know the kind that sits in the center of your belly like a tight knot of worry and dread? After Phil, my big brother, died, I had that stomach ache nearly every weekend for a year. Our family saw him for the last time on a Sunday morning and he died that afternoon. So each weekend afterwards I would relive that day over and over. I would take walks alone so I wouldn’t cry in front of my husband and son. I would stand a quarter of a mile away from my house and sob on the side of the road. It happened so many times that I still tear up occasionally when I walk that hill because my body expects to cry.

And now it’s that day once again. July 23rd. I hate this day. A good friend has a birthday today and I don’t think I’ll ever be able to celebrate with her on this date. My life and my family’s lives were so torn apart that day. And no matter how much I work through the grief and keep putting one foot in front of the other, my life will never, ever be the same. As much love and kindness as I get from my friends and family, there will always be this gap in my life and this bit of unreachable joy because Phil isn’t here to make us laugh or to tell stories or to just be here. To just be.

There’s also this little bit of guilt that I’ve been hanging on to and I don’t know what to do with it. While my brother was in the hospital, his partner and I went to talk to him to basically convince him that it was ok to die. It was ok to say he had enough. Once he made that decision, the bravest thing I’ve ever seen by the way, he couldn’t look me in the face. I held his hand and cried on his bed, then I left. We went back to the room where my sister, mother and doctors were sitting and told him that he was ready to “go.” Then everyone went back to Phil’s bed to say goodbye.

But I didn’t. I told my sister I had said goodbye and had already told him I loved him and it was their turn to have time with him. But why didn’t I go back? Why didn’t I take one more look at him and touch him and say “I love you” one more time?

I remember telling my sister to tell Phil that Dad loved him because our dad didn’t come. He just couldn’t. And I didn’t want to be too selfish and take more time with Phil than the others….but I also think I was afraid he wouldn’t be able to look at me again. I *was* being selfish. I should have gone back into that room one more time, no matter if he could look at me or not. I should have spent every imaginable second I could with him.

But I didn’t.

And I deeply, deeply regret that.

So now I go on. I try to remember the great times we had, the laughs, the stories, the hugs and the so many “I love you”s. I will talk out loud to Phil when I need him and imagine him talking back. Tonight my sister and I will toast our favorite brother and tell those stories and laugh and hug and say “I love you”.

And we will keep putting one foot in front of the other.

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I tried…

…but did I try hard enough? Last night, as I sat with my mom, as we laughed and cried at “This is Us,” I rode an emotional roller coaster between guilt and relief at what today would bring.

This past week, Mom’s memory has been the best it’s been in over 2 months. Physically it hasn’t been great, but mentally things were better. Yet I know that it won’t always be that way. I know that a residential care facility and the folks that work there will care for her the way she should be. She won’t be alone for 6 hours a day like she has been while I’m at work. I know she’ll eat lunch and it will be good for her (and hopefully yummy) and I won’t have to inspect the trash or fridge to see if she ate what I put out for her or if she ate a half loaf of bread instead.

It also means I won’t have to change her sheets when she had an accident. I won’t have to clean the bathroom floor or the toilet or the bathroom counter nearly every single day like I’ve had to for two months. I won’t have to sneak into her room and steal her dirty clothes so I can clean them. Or ask her multiple times to please change her clothes or to take a shower.

But it also means she won’t be here as we eat our dinner around the table and talk about our day. Or laugh at silly things we find on television. Or fold all of our clean laundry (this was one of her favorite things to do).

For the past few weeks, various medical professionals as well as my friends and family have all said, “It’s ok. You’re doing the right thing for both your mom AND for you.” But this afternoon it did not feel like that at all.

My sister and I drove my mom to her new home, and it really is a lovely place. It’s not assisted living or a nursing home, but a residential care facility which is kind of in-between the two. It’s a very homey place, doesn’t smell like a nursing home or a hospital. Mom’s roommate is fantastic and she loves to watch tv as much as Mom does.

But as soon as we got there, Mom was angry and upset. After we sat in her room for a minute, I had to get up and leave because I was starting to cry and I wanted to find the director. Mom argued with my sister about why she had to be there, saying that yes she could take care of herself, but thankfully, my wise sister, distracted Mom with photos and questions about our grandfather. By the time I got back, Mom was smiling and was willing to let me put her clothes in the dresser. Later she went to lunch in the dining room with everyone else (and my sister) while I filled out paperwork.

We visited for a while longer and I encouraged Mom to walk about in the rest of the building, check out the two large areas to sit and read in or watch television. She sat in her recliner before we left and settled in to watch tv with her roommate. Once my sister and I got to the car, I sobbed. It felt truly awful to leave Mom. I felt like I abandoned her and let her down. I’ve felt guilty just thinking about when this day would come, and now that it’s here, that guilt sits heavy in my stomach, my chest and my head.

guilt-and-grief

I KNOW that Mom needed more care than I could give her. I KNOW that my son needs me and has needed me the past few months when I put my mother’s needs before his. I KNOW that my mental health needed this to happen.

So why does it feel wrong? Why does my stomach still hurt and my chest feel tight? Why do I feel so guilty when it’s the right thing to do?

 

 

 

 

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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.

 

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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.

 

 

 

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Regret and Gratitude

Recently, my husband was away on a two-week business trip.  I have to say that my house stayed cleaner longer, I had very little laundry, and our grocery bill was reduced dramatically.  Yet, oddly enough, my running suffered.  Running ended up causing more stress than it relieved.

I typically run three weekday mornings and a “long” run on Sunday morning.  Rarely is my six-year old son even awake yet by the time I finish my weekday runs, but my husband is usually here and if I’m late getting back, he wakes our boy up and starts getting him ready for school. So….what do I do when my husband is away?

Treadmill, you say?  I tried. I really did.  But spring in Maine can be absolutely gorgeous, and after one mile on the treadmill, I knew I couldn’t do it.  I just had to do this outside somehow.    So on that first Sunday morning that my husband was away, after a mile on the “Dread,” I ran a mile outside then checked on my son, who was thrilled to play on the computer at this time of day. He didn’t care where the heck I was!  I continued my next three miles the same way.  It was not much fun, but I was happy enough and my boy was ecstatic.

Yet my early morning weekday runs were a different story.   I was stressed leaving my house while my son still slept.  I wasn’t worried about anyone breaking in or anything like that, but I didn’t want him to wake up alone.  We did come up with a plan where if he awoke, he could light up the “Mama signal” (the outside light) and I would come running.  During these runs, I was literally running up & down the road, so I was never far.   He did use the signal once, and the rest of the mornings he was either asleep the whole time or woke up before I left.  But during every single run, I felt guilty.  Part of me felt that I needed to keep running for my physical and mental well-being, but the other part felt that I needed to stay home and figure out another way.  The stress and guilt I felt was not eliminated by the running but was fueled by it……yet I still did it.  What does that say about me?

I discussed this with my husband while he was away, and we both agreed that we have a child that is easy going and doesn’t typically “get into stuff.”  In other words, he wouldn’t ever turn on the stove or run down the street because, honestly, he has a lot of fear inside of him.  If he gets scared, he will wait outside on the steps for me (which is what he did on the one morning he used the Mama signal).  We both knew our boy would be ok while I ran, but….it still wasn’t the best decision we’ve…..no, I’ve… ever made.   It was ultimately my decision, and I think I have a lot of guilt about it.  I didn’t leave him alone for any major length of time, but 10 or even 20 minutes can feel like a long time to a six-year-old.   He probably won’t even remember this next year, but will I?

Katherine Hepburn once said, “I have many regrets, and I’m sure everyone does. The stupid things you do, you regret if you have any sense, and if you don’t regret them, maybe you’re stupid.”   I’ve always found Katherine Hepburn to be a very wise woman, so I’m hoping this means that I’m not stupid.  I just feel really stupid.

Anyway, after those guilt-ridden, stressful morning runs, I asked my mom to hang out with Bri while I ran last Sunday. This was my first 8-miler since early March, and I wanted it to be a decent one.  Knowing that my son was home playing “swords” with Grammie, made it one of the most relaxing and enjoyable runs I’ve ever had.

My husband is now back home.  I’ve been on two early morning runs so far this wee484474_4268397630915_1469183956_nk, and even with the foot pain I’ve been having, they were stress and guilt-free.  I’ve always appreciated the support my husband has given me over the past few years as I’ve attempted to become a runner.  He always tells me what a great job I’ve done or how super-hero like I am, even if he has no idea how long I was out there or for how far.  He thinks it’s amazing that I run at all.  But I don’t think I ever knew how good I really had it.  So thank you, dear husband.  You truly are my greatest cheerleader and support.

Now please pick up your dirty dishes and place them in the sink….or at least near it.