And then there were four…

My mother always said that when she gets to the point where she needs to be in a home, then that’s what we need to do. She never wanted to live with her children because she never wanted to “burden” us. But now that we’re facing the truth that she needs to be somewhere besides her own home….well, let’s just say that without planning for the future, we can say whatever we want but it doesn’t make it a reality.

I moved Mom in with my family a few weeks ago. She just had a major surgery that would help her circulation and we just couldn’t send her back home. She had stopped taking her medication, even with many reminders. Her diabetes was out of control (will lose several toes next week), she barely ate, and her house was….awful. You have to understand that my mother was always an immaculate housekeeper. Everything was cleaned A LOT. Very little clutter (except the occasional tabletop or closet) and just a really neat house, you know? I realize that when you get older, you can’t do as many things. I get it. But not like this. Food was rotting on the counter. Plants could grow on the carpet. Burnholes in the mattress and clothing. This wasn’t my mom’s house anymore. This wasn’t my mom. And this wasn’t safe.

So, what to do? Assisted living? Nursing home? My house? Honestly, there weren’t many options. At that time, if she didn’t come home with me, she’d go back home. And I couldn’t do that. I felt like that was neglect on my part. Cruel, even. But is it cruel to take her away from her home? Maybe. But the things that have happened at my house since she’s arrived has made me realize how bad her dementia and her physical health really are. Every time I had to go to her house, I was always worried about what I’d find. And don’t get me wrong, there were good days. But so many bad ones.

Is it any better with Mom living with my family? Well…..yes and no. She now takes her meds, she eats, she changes her clothes every day, she washes up and she showers. Most of those things were not happening at her home. Is she happy? I’m not sure. Was she happy before? I don’t know. I really don’t.

And what about my family? Lots of changes. Difficult some days, but we laugh as much as we can. My husband has been an absolute saint through all of this. He’s been so supportive and helpful. My son is doing well, although we have had many discussions about what we don’t like about our current situation and what we do like. He loves his grandmother with everything he has, but it’s still difficult when you lose your bathroom and Grammie acts odd sometimes. Both my husband and I try to carve out one-on-one time to spend with him. We always spent time with him before, but now it’s even more vital.

And me? Well, I finally start counseling next week so maybe that will help? I’m definitely feeling more stressed than ever before, feeling pulled in so many directions. I ended up crying on the phone to the hospital when they changed my mother’s appointments after I had completely rearranged my life so I could get her there. The woman on the phone was unbelievably sweet but I can just imagine what she thought.

I often think about my brother and wonder what he would think of all this. I miss being able to talk with him and vent. My sister has been as good of a help as she can be, but Phil would help us find he humor in all of this. I’m trying to do that.  Like guessing which cupboard my  mother will put the peanut butter in. Yesterday was the refrigerator so I got that one wrong! And at least now there are as many humans in the house as there are cats!

alzheimers-nurse-humor

We are working on a plan for when Mom’s health changes. But that takes time. I’ve already waded through piles of paperwork, nurse and social worker visits, and there’s still more to be done. Do I want my mom to stay with us? Yes. Most days. I love her and I’m really trying to do what’s best for her. But I also know that I need to have boundaries. My family needs those boundaries. When Mom’s mental and/or physical health gets to a certain point, then another move will have to happen. In the end, I know I need to do what’s best for me and my family. I just hope I’ll know what that is when the time comes.

 

 

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Suddenly

I know. You want to sing it, don’t you? It’s ok. You can.

This morning started out as a typical Sunday morning. I slept a little late, watched a bit of tv with my boy, baked breakfast cookies for the week and started laundry. After a while, I decided I didn’t want to go out and walk on this dreary day, so I started to move furniture in the living room so I could work out there. I had to move my body but nothing too strenuous. As I was moving the hassock, my  husband asked me a question. I started to answer, then stopped. I tried to take a breath then apologized to my husband and started to sob.  He ran over to me and hugged me and just let me cry.

I had this sudden feeling of powerlessness and loss and sorrow. My mom is about to go through a pretty intense operation on Tuesday to help her circulation in her left leg. It’s a tough thing for anyone to go through, but a 71-year-old woman with a frail body and mind? It’s even tougher. I’m scared for her. I’m scared for us. I think she’ll make it through the surgery, but her mind might not. Will she know my sister and I when she wakes up? Will she know her son is gone? I don’t know.

I was missing my brother this morning, too. In the fall and winter, nearly every other Sunday my brother stopped by my house to have tea while I baked something. He would tease my son or chat with him while I washed dishes. I’d lean on one side of the counter while he sat on the other and we’d munch on goodies and talk about our week. Eventually we’d head into the living room and continue our conversation. It was a part of my week I always looked forward to.

I miss him so fucking much.

I wish he’d be at the hospital with us while we wait for Mom’s surgery to be over. He’d make us laugh and just be there. His presence just made me feel better. He’s part of my home.

After crying in my husband’s arms for a few minutes, I walked about the house and realized I just needed to be outside. So I slipped my headphones on, told my family I was going for a run and left. This is only the third run I’ve been on in the past month, but it felt ok. It was really difficult and I trudged more than I ran, but I refused to walk. I needed to sweat out some of this anxiety and sadness and just plant one foot in front of the other. So I did. And it was ok. I felt better than I had when I left my house. So that’s something.

On a side note, if you read my last post, you know I’m trying to get a counselor/therapist/someone to talk to. It hasn’t happened yet. I did make a few calls, finally got an appointment, but then cancelled it. Our electricity (like many in Maine) had been out for a few days last week and I couldn’t deal with doing one more thing. And no, I didn’t reschedule yet. I need to get Mom through her surgery and then we need to take life day by day after that. Am I making excuses? Probably. But the thought of adding one more thing to my life at this moment makes me want to pull my hair out. And I like my hair. So this will have to wait. For now.

If you’re feeling particularly generous or positive or hopeful on Tuesday morning, try to send a little of that my mom’s way, ok? I know she’s a tough ol’ bird, but a little extra optimism wouldn’t hurt.

That First Step

I’ve always said that blogging has been my own source of therapy. I write about my issues, get everything out of my heart and head and typically I feel better. I often get feedback from my readers, many of them being my friends, and usually I feel like my head is clearer, my body a little lighter and I’m not as alone as I thought I was.

But now….now I think blogging might not be enough.

As I’m writing this post, my brother has been gone for 11 weeks, 5 hours and 11 minutes. I think I hurt more now than I did that day. Everything was fresh and raw and horribly painful that day, but now I feel empty. Hollowed out. Lost.

For the past few weeks, I’ve known that I should seek out counseling. The combined stress of trying to care for my mother and dealing with my grief has been overwhelming.  One morning when my boss encouraged me to give the counseling program a call, I broke down in tears and told her I just couldn’t. My mom’s health has deteriorated very quickly in the past few months and I’m taking her to one doctor or another each week, sometimes twice a week. The thought of adding something new to my schedule broke me.

Then my best friend started nudging me, trying to get me to make that call. I put it off for another week then finally made the first call. This was just to set me up and give me a list of counselors I can call and try to meet with. My stomach hurt the entire time and I willed my voice not to shake. After the call ended, I put my head down on the table and cried. If it’s this difficult just to get a list of names, how the hell will I be at an actual session?

Now that I have my list, I still haven’t been able to call anyone. In fact, two days after getting the list I thought, “Ok. This is good to have, but I’m really fine. I can handle this.” I spent the afternoon cleaning my mother’s home, having lunch with her and taking her to the store. Sometimes when I spend time with Mom, I miss her. I miss the person she used to be. I felt like that this week, but I also tried to make the best of the situation. We chatted about food, my son, our cats and how beautiful the leaves were looking. “I can do this, ” I thought.

And then I spent the evening with my son. We’ve been watching The Flas71289d196e3604c520bb1fdd7bf20310h on Netflix. So, if you haven’t been watching season 3 of The Flash and intend to, skip this part now. *SPOILER ALERT*  In this episode, Cisco, one of my favorite characters because he makes being a geek look so damn cool, has been seeing visions of his dead brother, Dante. Cisco gets his hands on an artifact that messes with his mind and he eventually must seal the artifact away. But in doing so, he will never see his brother again. His rational mind knows that this image isn’t really his brother, but it doesn’t make the task any easier. So he has to choose–see his brother again or lose his brother forever but save his friends’ lives.

As Cisco makes his choice, I cover my face and sob into my hands. My son asks me what’s wrong, but I can’t answer. I’m sobbing so hard that it’s difficult to breathe, much less talk. My sweet boy then slides closer to me on the couch and hugs me. I end up crying on his shoulder, literally. I finally pull myself together after a minute and let my boy go. All he says is, “Uncle?” I nod. I apologize to him, but he said that it was ok. Then he takes off his shirt and says, “Here, Mom. You can just use this as a tissue.”

I love that kid so much.

So…after that little breakdown, all from a damn tv show no less, I think I might be able to make that phone call. Or I know I should.

I know I have to at least try. That’s all I can promise myself right now. But it’s a start.

 

49 Days

Yesterday I ran what used to be my usual 5k. It’s the furthest I’ve run in months.

Running used to give me joy. It was my time to just be with me and nature and music. It’s a time to push myself physically and very often mentally. But now running is just….meh.  Actually it’s more than that. It’s very difficult. It’s often impossible. And for the past two months it’s just seemed pointless.

Yet yesterday was different. I started out walking in the morning, but after only a minute I decided to try and run for at least the length of one song. I told myself it was ok if I couldn’t go far, just do what I can. But then my music kicked in and it was a different mix then my usual playlist. I let my Ipod shuffle through the thousand songs I have on it and come up with whatever. And what it came up with was my brother.

Phil made me a running cd a few years back and on it was just pure Philip. It was a mix of dance music and alternative stuff and angry songs and show tunes. It was awesome….except not to run to. I remember running to the playlist right after he gave it to me and I had to stop when I came to “Tonight” from West Side Story.

Not the easiest thing to run to.

But yesterday? Yesterday the shuffling of the music found all of Phil’s songs and it was wonderful. The dance music pushed me along, the angry music pushed me harder, and then, as I was running up a small hill I heard Maria calling out for Tony. I laughed out loud, shrugged my shoulders, and said “What the hell.” I listened to the entire song as I trudged along the road, thinking of my very unusual and eternally entertaining brother and I finished the run with a small smile on my face.

Today, though, was not like yesterday.  Missing my brother, I watched a short video I have of him because I needed to see him again. I needed to hear his voice, his laugh. I haven’t watched it since his “get together” six weeks ago. Later I took a short walk instead of a run. I thought of Phil just like I did yesterday, but ended up sobbing on the side of the road, bent over with my hands on my knees, trying to calm down and breathe.

Grief is a fickle thing. Who knows what tomorrow will bring? Maybe I’ll hear about the new movie, “It,” and it will make me think of Phil. Well, I know it will but whether it makes me happy, sad or angry is anyone’s guess. Or maybe I’ll have another dream about him but it will be a good one this time. Or maybe none of those things will happen and I’ll get up, take the boy to school, go to work and just go on.

And sometimes that is the hardest thing of all.

But somehow we manage do it anyway.

 

 

It’s the Little Things

This morning I awoke with anticipation of a decent day. My boy started 5th grade today and like most first days of school, he was looking forward to it. (Sadly, that excitement typically ends by week 2, but we hold onto the good as long as we can.)  My husband made me a lobster omelet for breakfast, the kid was smiling as he entered the school and I was off to work.

Typically driving makes my mind wander and during those moments, my mind always goes to my brother. Either to good memories or questions I want to ask him or I relive that last visit with him. I always end up in tears, no matter what my thoughts. But this morning, my mind didn’t wander. I kept it focused on my driving and on the radio. Nothing else.

But the day would not be a tear-free day, nor would it let me put my brother aside. I had a visit from my brother’s partner early in my work day. We had to discuss legal issues about my brother’s estate. This was not an unpleasant conversation, but just having to do paperwork for this kind of thing is not fun. It’s much worse for my brother’s partner, but we are all trying to make this as easy as possible for him. If that really is possible.

Later in the day, a book title nearly sent me into tears. “So Much I Want to Tell You.” It’s a book by Anna Akana to her younger sister who committed suicide ten years ago.  Every day I not only want to tell my brother something, but want to ask him so many questions. Like, aren’t you pissed you couldn’t see the new Planet of the Apes movie? Or the fact that Lego Batman came in the mail after you died? Or the fucking fact that you were listening to an audio book but you were only on disc three? Doesn’t that make you angry?!?

It makes *me* angry. It makes me really fucking angry. And unbelievably sad.

But you know what broke me today? Even after the paperwork and the book title, I pretty much kept my shit together. I went home early to be with the boy after his first day of school. It’s a tradition I’ve been able to keep up through all his school years so far, and I look forward to being the first one he tells his day to. As usual, he gave me a pile of papers I had to look through and sign and all that jazz. We call it “Mom’s homework”. So after he told me about his day and had a snack, he asked to veg for a few minutes with a YouTube video. I obliged so I could fill out all the paperwork and get started on dinner. I sifted through the papers, signed where I needed to, recycled what didn’t pertain to us. And then I got to the emergency contacts.

Since Kindergarten, my brother has been my son’s number one emergency contact.

But I forgot.

I wasn’t expecting to see his name and phone number listed in this pile of papers.

It stopped me cold. I just sat staring at his name, knowing I had to cross it out.

That’s when I cried.

I crossed my brother’s name from our emergency contact list and it felt like our lives got so much smaller.

I felt much lonelier than I had a few minutes before.

I felt…guilty….lost….defeated.

And sad. Always so fucking sad.

Grief

 

 

 

The Pretender

Dear Phil,

I really don’t like this.

I’ve cried every day since we said goodbye. Most days have been those horrible gut-wracking sobs, the kind where snot runs from your nose to your mouth. I’m not sure when those will stop.  I’ve cried everywhere. Every room in this house, in the car every day, other people’s homes, at the library, in bathrooms, at a bar, outside during my walks, even at the Maine Discovery Museum. But you’re probably not surprised by any of that. I cry at everything, right?

Yesterday, I wanted to call you. Not only did I find something totally cool in a library book, but I heard on the radio about a restaurant in Japan that has monkeys as waiters. Monkeys, Phil!!

waiters-1

I wanted to talk to you and laugh with you so badly…that’s happened every day, too. I hope that doesn’t ever stop.

We went to your house today. I’m not sure how Larry does it. He’s strong, I know, but this is hard. I sat on your bed and cried. I just kept looking at that green and white striped shirt you wore so much. It’s hanging in your closet, waiting.

The boy couldn’t go inside your home yet. I thought he was ready, but not quite. Maybe next month….or next year.

So…I did something kind of weird. A few days after we spread some of your ashes around my house…I panicked because it had rained and I thought all of your ashes would have dissolved into the ground and I wouldn’t be able to see…well…YOU anymore. But there was a bit under that little bush by my front steps….and I scooped you up into one of Mom’s empty memory medicine containers.

I know, I know! It’s fucking bizarre and I’m sure you don’t want to be there but you’re not there anyway. Just a little bit of your body is.

I just….I just can’t let you go. I didn’t think I wanted any of your ashes because that’s a bit freaky for me but when it came right down to it? I couldn’t bear the thought of not having you somewhere near me for the rest of my life.

It may have been a fantasy, but I thought we would get to be old together. I thought that you and Bonnie and I would get to sit on my porch with our creaky bones and sit in creaky rocking chairs and reminisce about the old days. I just…I really didn’t think you’d go this early, Phil. As sick as you were? I really thought we all had more time with you.

I really did.

I miss you. Every single one of us who loves you misses you. The world was pretty fucked up before you had to go, but it’s even worse now because you’re not here to make fun of it and make us all laugh at the absurdity of it all.

I can clearly hear your voice telling me that I’ll be fine, that I’ll be ok, that I’m stronger than I think I am. (I know, I know, because Bonnie said that, too.) But right now I’m really not ok. Instead I’ve become very good at pretending to be ok. I keep on working and tending to my family and I thank all that need to be thanked, but I feel so fucking sad and empty that sometimes I cannot take a breath.

So….yeah. This sucks monkey balls. It really does.

Love,

Holly

 

Broken

I’ve lost track of how many times I’ve started this post. Maybe I shouldn’t write it if I can’t get my thoughts together, but maybe it will help? I don’t know.

My brother, my big brother, my first friend….Phil….died on July 23. To say that I’m heartbroken or to say that my family is devastated does not seem to really say what we’re feeling. I don’t want to speak for them, but any parent who loses a child, whether 2 months old, 14 years or 49…it’s unspeakable, unfathomable. And my brother-in-law lost his partner of nearly a quarter of a century. My brother was the younger of the pair. How does this man, who was with my brother not only throughout the years but through the past few weeks of pain and uncertainty and thankfully with my brother as he took his last breath…how does this man go on without having Phil there to make him laugh every single day?

How do the rest of us?

If you know me well or if you’ve known me for a long time, you know I looked up (literally and figuratively) to my brother. He was a giant in my life, and being 6’6″, a giant in most people’s lives. He was always naughty, like in a Groucho Marx kind of way. He was incredibly kind, especially to his family and friends. He loved us with everything he had and it showed. I don’t think I realized how good he really was until I saw him with my son.  Watching my brother read to my son or play action figures with him or chase my boy with a squirt gun not only made me happy, but it allowed me to watch another person become completely enamored of my big brother and with good reason.

Phil made us all laugh until we cried. He could find humor in nearly every situation, no matter how dark.  He listened. He was never afraid to be himself and encouraged that in others. Hence the photo.

Phil&Brihats

He loved to cook. He loved to try funky foods because he knew he would never travel again and that was how he could “vacation” or experience life to the fullest. His music tastes ranged from Weird Al to Adele to show tunes. His taste in books were as varied as his taste in music. He loved Stephen King and other horror writers, but he enjoyed Liane Moriarty, Victor Hugo’s Les Miserables and MAD Magazine.

But he was also a writer. A really good one. I have some stories and poems he wrote years ago, including a story he wrote me for one of my birthdays, that portrays himself as a monkey. Which is perfectly fitting because he had a thing for monkeys. He was finally published a few years ago by Forbidden Fiction with some of his gay erotica stories. And before you start judging, you should read some of it. He always said that his erotica (and most others) were really romance but with a bit of nastiness thrown in. Love, not sex, is the true focus of erotica.

Phil was an amazing human being. And I miss him. But even saying that doesn’t sound right. It’s so much more than missing someone. I’ve had this constant ache in my belly since he died. I’m so tired and I feel heavy and even when I think I’m ok, something will trigger a memory and I’m caught off guard and I’ll let out this quick little sob. I try to hold it back, but what’s the point, really?

My brother is in every room of my house. He was here nearly every week for the past decade, either to visit with us or babysit my boy after school or here for family gatherings. He has a pair of slippers here that I bought just for him after my husband and I bought this house. (His size 16 feet were not easy to buy shoes for.)  There’s a box of Splenda in my cupboard for when he came over for a cup of tea. He has his own profile on my Netflix account. He’s everywhere.

And yesterday, we even scattered some of his ashes around the outside of my home. I wasn’t sure I wanted to do that, but my boy did. He knew right where Uncle should be. And once we scattered a few of Phil’s ashes, my boy said, “I’m never going to wash my hands again.” We squashed that idea immediately, but I knew exactly what he meant. I didn’t want to wash my hands again, either. In fact, I kept rubbing them together, trying to embed some of my brother into my skin. Later in the day, when I started to wash dishes, I realized what I was doing and pulled my hands from the water like I had been burned. I was so mad at myself. I forgot. I fucking forgot. Rationally I knew I had to wash my hands at some point but did it have to be then? Couldn’t I have tried to hold on longer?

But here’s where everything gets *really* difficult.

Life goes on.

How the hell does that happen? Actually, I’m not even asking how right now, but why? Why does it have to? There’s a big chunk of me missing. That person I used to watch the Oscars with, the relative my boy would look forward to seeing each week, that guy I’d talk books and writing with….fuck.

Easter, all of our birthdays, Halloween, Thanksgiving, Christmas. Phil was here for all of those things.

And now he’s not….and I’m just…..