To Smile or Not to Smile

Tonight, at a library function, I met someone that knew my brother. After we were introduced, she tilted her head slightly and with a big-ass smile on her face she said, “Your brother passed away last year, right?” She was still smiling. WHY THE FUCK WAS SHE SMILING?!?  I wanted to rip her throat out. If I had the strength, I would have taken my bare hands and ripped her mouth from her face. But I think I was too shocked to completely register my anger.  Why…what…why was she smiling? Really. Please tell me. Instead of scarring her for life, I quietly answered, without a smile on my face, “Yes. Yes he did.” She proceeded to tell me how she knew him and talked about the little dog that lived in my brother’s house but I could still only think about murdering her.

gold-mask-smiling

Has enough time passed that I’m supposed to be ok with someone asking about my brother’s death with a goddamned smile on their face?!? Am I EVER supposed to be ok with this? Because I can assure you that I am not nor ever will be ok with a fucking smile on your face when you ask about my brother or his death.  Losing him was the worst thing to ever happen to me and it has changed who I am. I miss him every damned day. I no longer have that person in my life who will recommend books, movies, and music to me and knows what I’ll like or hate, and will recommend shit I hate anyway. He’d do it just to push my limits but in a way that ended up opening my world just a little bit more. He was that person that made me laugh about things that you probably shouldn’t, but you know you can because it’s ok with him. He was the fucking life and laughter of our family and now he’s gone.

Forever.

So if someone asks you, “Do you smile when you ask about the large black hole in someone’s chest or that limb that they’re missing?”

The correct answer is NO.

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Guardian of the galaxy? Nope. Just of my mom.

Two weeks ago, I went to court for the very first time. Ever. I think I’ve been lucky in that way. I’ve never been to traffic court or divorce court or small claims court or any of that jazz. So many of my friends have had to deal with legal issues and I feel for you all.

I was pretty nervous before getting to probate court but happy to have my sister with me. She can talk your ear off about anything, which is a GREAT distraction. Thanks, Bon. 🙂  We were both feeling pretty confident that everything would turn out ok, but you never know, right?  But thankfully, it really was ok. The judge asked a few questions, I answered them with my sister having to prompt me once because I couldn’t think, and then it was done. Now Jack (or anyone) cannot take Mom from the safe place where she’s at. *big sigh of relief*

Afterwards, my sister and I went to Mom’s house to look for some photos and cookbooks. It was really, really weird. It’s one thing when someone has passed away and you’re looking through their things, reminiscing, and figuring out what to do with everything. But what about when your loved one is in a home and very much alive? We felt…sneaky. I tried not to cry multiple times (didn’t always succeed) because it just felt wrong, pawing through our mother’s things. And yes, good things did come out of it. We found photos we didn’t even know existed, so now we can scan them and give everyone, including Mom, copies. I found a few bags of clothing I ended up washing and taking to Mom, as well as more winter clothing for later on. So it wasn’t really wrong….but it felt it.

As we were going through some of Mom’s kitchen cupboards, both my sister and I talked out loud to our brother, cursing at him for not being there. Calling him an asshole for leaving us with this job, but laughing when we said it. We reminisced about so many good times. Weird items like a certain bowl or nutcracker or even Tupperware would spark memories and stories in us both. It was odd and unsettling in some ways, but a bit cathartic at times.

What really got me was the jar we found in my mother’s closet. Twelve years ago, I made her a jar of memories for Mother’s Day. Each slip of paper was a different memory I had of her and the note attached to the jar was me telling her I couldn’t wait to make more memories with her. It was before I ever got pregnant, before I got to see her be a Grammy to my boy, before she ever showed signs of Alzheimers.

But she kept the jar. It may have been in her closet, but she kept it. I’m not sure why I got so emotional about it. Either it was because of the fact she kept the jar or it was because it was foreshadowing of the future or that I felt this weird moment of rightness. Like I made her something kind of cool and it was something a photo album couldn’t capture–moments in our lives that I wanted to remember and hoped she’d remember, too. But it also showed my love and admiration and respect for her. I guess I was glad we found it because it was proof to myself that I did show my mother how much I cared for her.

Having to place Mom in a facility didn’t feel like I was showing her my love, although I suppose it really was. It just didn’t feel like it at the time. But now when I visit her each Saturday, she’s happy and funny and more like herself than she’s been in ages. Of course her memory is still deteriorating. When we went through some photos just yesterday, she thought a few pictures of me was really my cousin, and she didn’t recognize her second husband in a few photos. I found myself saying who everyone was before she could identify them or not be able to identify them. Maybe I was trying to save myself some heartache? I don’t know. I’ll have to find out what I really should do. Label the photos? Let Mom try to figure out who they are? Put them in chronological order? I have some research to do, I guess.

In the meantime, my visits with Mom will continue (always with coffee and treats) and we’ll have as many good times as we still can. Mom loves to talk about the other residents, who she thinks is sweet and kind and who she thinks is nuts. Mom’s sense of humor is still as great as ever, and we always laugh a lot when we visit. Those are the moments when she still feels like my mom. And as long as we can still laugh, then all hope is not lost, right?

Absolutely. ❤

 

 

Proud

Dear Phil,

I took the boy to his first Pride parade yesterday. He was so happy to be there, Phil. He cheered and clapped and he kept saying how great it was. I know he was in awe of some of the drag queens we saw. They were beautiful!

I tried not to think too much about you, but that was impossible. I kept thinking of us last year watching the parade with my friend, Trish. You had to sit through the parade but you clapped and cheered. I remember how fragile you were. I hovered and worried about you that day. I guess the writing was already on the wall, but I refused to read it. I wasn’t ready.

But yesterday, as the kid and I strolled through the Pride marketplace where he bought a rainbow bandana and fedora (wore both of them proudly) and a rainbow shot glass (this kid and his shot glasses disturbs me a smidge), I watched all the folks walking around and imagined the conversations you and I would have. I pointed one fellow out to Bri and told him that more than likely you would roll your eyes when you saw the guy with his cropped tank top and pot belly and mutter, “What a mess!” Then I would laugh and say, “No, c’mon, he’s trying to be fun and cute with his rainbow hair and perhaps too tight shorts.” Then you would scoff and retort with some scathing remark about the poor guy and I’d end up laughing so hard I’d be in tears.

I had to admit to the boy that I missed you an awful lot at that moment. I didn’t cry, though. You’d be proud of me. I swallowed my sob and just looked up and away from the crowd.  That’s when I noticed this:

rainbow2

Fantastic, huh? It was there the whole time and I hadn’t even noticed it. How the hell did I miss that? I think as tall people we always look down, don’t we? I need to start looking up more. So I snapped a picture then grabbed the kid’s arm and we wandered some more. I could nearly hear your laugh everywhere we went.

Do you remember what we did last year after the parade? I bought you supermarket sushi as a belated birthday present and we went back to my house to eat. At one point, we were sitting at my kitchen bar and I popped up to either wash a dish or do something and you grabbed my arm and said, “Stop. Sit down and eat with me.”

So I did.

Did you know that was the last meal we’d eat together? You probably had an idea. You understood more of what was happening to your body than I did.  Or I kept denying it. You always came home, Phil. Each time you went into the hospital, you always came home. None of us ever wanted to believe it would be any other way.

So…thank you for trying to teach me to live in the moment that day. To spend time with you while you were still here. To just be with you and eat and talk. That’s what we did best, right? We’re a family of great eaters and talkers. Especially eaters. 😉

I love you, old man and I miss you like fucking crazy.

Hugs and sloppy kisses,

Holly

Birthdays

Tomorrow is my birthday. My first without my brother. One week from today should have been his 50th. This weekend we would have had a family party to celebrate our birthdays along with our dad’s birthday and Father’s Day, just like we’ve done for over 10 years. Phil and I have been celebrating our birthdays together for most of our lives. That’s what siblings do when their birthdays are 6 days apart.

So this year? No family party. I have no desire to celebrate and neither does my family. We’ll get together later in the month so we can hang and eat and play games outside. We’ll celebrate summer but not birthdays.

Typically, I’m pretty excited about my birthday and I think I’m still a little excited this year. I like gifts, good food and kind words. But I’m thinking more about Phil’s birthday this year. I want to celebrate him somehow that day. I know I’ll be thinking of him, probably post about him, but what else? If he was here, I’m sure I would give him black balloons or something with the grim reaper and bring him sushi or something else he loved to eat. But….what do I do now? Maybe buy his book that I haven’t purchased yet? Read something he would have, eat foods he liked?

Maybe just talk about him. Cry. A lot. Maybe try talking *to* him again? I did that the first week after he died. I didn’t know how to live without talking to Phil nearly every day, so when I was in the car or went for walks, I’d start talking to him. But I stopped. I think I was angry, still am. Angry at the world, at fate, at Phil’s stupid fucking heart. But I miss him so damn much. Still. I miss talking to him about books and movies and my kid. I miss his laugh, his view on the world, his very loud opinions about people and their stupidity. You know, with all the drama that surrounded my mom and her situation these past few months, my sister and I both often think, “Phil, you asshole, we can’t believe you missed out on all this shit!” I can still hear that mischievous laugh he had when he knew he got away with something. It was priceless.

I guess I’m celebrating Phil right now. That is if you can “celebrate” someone with tears staining your face and snot threatening to stain your shirt. And I guess if you’re reading this, then maybe you’re celebrating my big brother, too.

phil&ismilingIf you have a glass of dry red wine or Coke Zero or even a joint, then raise it to that handsome guy you see in the background there.

The world misses you, Phil. It will never be the same without you. You were one of the greatest. ❤

Stress is a Killer

Let me begin by thanking all of you readers and your thoughtful comments and suggestions when it came to my mom and her care. As of 5 days ago, she is finally in a safe place. Unfortunately, it was after an incident where “Jack” had to be asked, by the police, to leave Mom’s house.  This was followed by two weeks of me stopping by every other day, checking on Mom, giving her meds, watching to make sure she ate, and horrible conversations with her about moving somewhere where she could be safe and taken care of.  You can imagine how those went, right? Not good.

After talking with Mom’s nurse and social worker, and having them tell me that it was really ok to lie to Mom and tell her she had an appointment when, in fact, she was moving, I ended up doing just that. The facility Mom has moved to also knew what was happening and they’ve had to do this type of thing before. The move is for the safety of the person. My emotional health was irrelevant but Mom’s safety was the most important thing I had to keep focusing on. And I did.

Once we were inside the facility and the director told Mom she was staying there for a while, Mom first got angry and headed for the door. Eventually she followed us to her room, sat on a bed, put her head in her hands and sobbed.

It was absolutely fucking awful.

In many ways this was worse than in January, when Mom moved to a different facility. Maybe because I was by myself this time? But in other ways I knew in my heart and soul that this was the best we could do. She would be safe from herself and at least one other. She would be eating 3 meals and 2 snacks a day. She would have other people around to talk with and to. And she’s only 25 minutes from where I live and much closer to other members of the family.

After driving back to her home that day and getting many of her things, then visiting a bit with her after placing family photos around her room, I left her in a good space. She was listening to music with other residents and was enjoying herself.  Then on the ride home, I had a sudden pain in my pancreas.

I’ve had pancreatitis twice now and I know what it feels like. I wondered if last year’s bout was stress-induced, and now, I really think it was and is. I didn’t think I internalized my stress. I talk about it, commiserate with those in similar situations, and attempt to exercise most days to relieve my stress. Obviously I’m doing something awful to my body and I have no idea how to handle my stress. So, to avoid going into the hospital, I’ve drastically reduced my food intake. I’ve lost 4 pounds in 4 days. As much as I’d like to lose a little weight, this isn’t the way I wanted to do it.  But it’s worked so far in keeping me out of the hospital. (I really think this might be some bad karma coming into play. I’ve tried to keep my weight down for my entire adulthood, obsessed over it for too many days to count, and now, here I am, losing weight and not really wanting to. It’s like the Gypsy from Stephen King’s Thinner is after me!) Not sure I can keep up with it for many more days, so I’m slowly increasing my food and testing how I feel. This doesn’t mean I’ll stay out of the hospital, but I have hope. I’m also running a mile a day thanks to Runner’s World “Summer Run Streak” challenge and my friend, Sonya. It might not be the wisest thing to do on such little food, but it gets me outside and out of my head for those few minutes. (Make that 12 minutes since I am definitely running slowly.) I’ve also attempted meditating (that helps get me to sleep) and have tried to take LOTS of deep breaths.

 

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Stressed much?

One of the most difficult things about Mom being where she is are the phone calls. Yesterday Mom had such a great day and told me she was “happy” to be there. That was pretty amazing and something I never heard when she was at the other place. And yet at 8:30 this morning I got a phone call from Mom, asking me to pick her up. I told her she needed to stay there. When she asked why, I told her because of her dementia. She then denied she had it. I should have known better. I never should have brought that up and just said she needed to stay for her health for a few days. Today I learned that this is called a “fiblet”. It is a “necessary white lie to redirect loved ones or discourage them from detrimental behavior.” The term “geriatric fiblet” was created at the 2000 World Alzheimer’s Conference. Who knew?

I went back to see Mom this afternoon since she asked me to visit during that awful phone call. I said I would. My husband told me I didn’t need to go. We had already had an eventful day, going to Mom’s house and taking care of a few things there, as well as dealing with the stress of having to meet “Jack” and hand over the cat. But since Mom is only 25 minutes away, I decided that I needed to do it for me. So I did and it was a brief but lovely visit. So tonight I can sleep well (barring no pancreas pain) and not worry.

That is the hope anyway.

 

Mom’s Day

Yesterday, I visited Mom with my son in tow. We brought bird food for her feeders, a new phone since we thought something was wrong with her other one, and lunch. I begrudgingly visited with “Jack” as well because what else can I do? I’m pretty sure he was high and I tried not to make too much eye contact. My son chatted with him for a  few minutes (my boy doesn’t know everything that has happened but *does* know the basics) then I gave the boy a plate of food and sent him into the living room with my mom.  We all ate, chatted and discussed Mom’s cat. She doesn’t talk about much else, so trying to have a conversation about other things can be difficult. But the visit was fine. Nothing like visits used to be, but life is different now. Before Alzheimer’s, I would visit Mom for several hours and not even realize it. Now I check the clock and stretch out the time to at least an hour, although I am often ready to leave after 10 minutes.

Today, since Mom’s phone line is acting up, I couldn’t call her. I decided that it was really ok.  I visited yesterday. I did my daughterly duty.

That sounds shitty, doesn’t it? Yeah, it does, but I think I’m ok with it. I have to be. I still love my mom, but the mother I knew hasn’t been there for several years. I miss her.

I’ve realized in the past few months that I’m not very good at separating the disease from the person. Sometimes I get so mad at what Mom does or says, but that isn’t Mom. My sister has been good about distinguishing between the two and trying to help me see the difference. Maybe I’ll get there someday, but for now, I think I have to distance myself from the entire situation.  I did send in the guardianship papers, which will change our relationship on paper, but it won’t change much in reality. I’ve already been her parent for a few years and now, if it goes through, I’ll be her parent on paper, too.

So, today, instead of worrying about Mom, I celebrated my own motherhood. My husband made me these fantastic gluten-free blueberry pancakes with whipped cream and fresh strawberries on the side. I took a 2-mile walk/jog with my son, I watched the movie “The Shape of Water”, then I went for two more walks interspersed throughout the day. (The boy was supposed to go on another 2-mile walk with me as the rest of my Mother’s Day gift, but in exchange for getting out of that, he has to do an extra walk with me next weekend AND he gave up his allowance this week.)  This might have been the best Mother’s Day I’ve ever had. I felt like I was on vacation. I ate what I wanted, felt very relaxed, and just tried to enjoy myself. Something I really haven’t done in a long, long time.

If you’re reading this and are a mom, I hope your day was a good one, too. If you’re reading this and you still have your mom, I hope you were able to celebrate her somehow. And if you’re reading this and you miss your mom,  I hope you thought good thoughts about her today. Try to remember the love. ❤

alzlove

 

Lessons to Learn

I’ve contemplated writing this post for over a month. I didn’t want to write it because it was no one’s business but mine and my family’s, but isn’t everything I write? Then I didn’t want to write it because the rage I felt prevented me from coming up with any words at all. Just today I decided that yes, I would indeed write about this latest shit storm, if only to help someone else down the road.

Let me begin with saying that if you have Power of Attorney for a family member, even for a person with dementia, that power only goes so far. We live in a country where everyone has rights. This is a good thing. It is. But is that person with dementia able to make good decisions, particularly about their health? Maybe, maybe not. Is a 7 year-old able to make good decisions, particularly about their health? We’re dealing with something very similar here. Just because a person wants to do something and is able to verbalize their want, does not mean that they should be allowed to do said want. Do we let 7-year-olds drive because they want to? Nope. Do we let people with dementia go back to their home with no one capable enough to give them medicine or feed them or remind them to bathe or clean up after them? Apparently yes.

My mother’s “friend”, let’s call him Jack, as in Ass, goes to the residential care facility where my mother is living, and packs up her things. He is going to take her back to her home where she’s happiest. Because my mother has rights, resident rights, she can tell the facility that she’s leaving. I can do absolutely nothing. I try to call her and tell her not to do this. No answer. I call Jack and tell him to stop. He doesn’t answer. I call my sister and we rage but we are helpless. Then I leave nasty voicemail messages on Jack’s phone, ripping him a new one. I have no idea what I said. I just know I was furious and frustrated and couldn’t believe this was happening.

I talked to my mother over the next few days. She, of course, was happy as a pig in shit. And you know, it was nice having her happy, but I also knew she wasn’t safe. During one of these conversations, I could hear Jack in the background, mumbling and freaking about something, but didn’t know what at the time. Apparently Mom’s blood sugar was so high that he was trying to make her a doctor’s appointment. He eventually took her to the ER where they gave her insulin.

I sent Jack a text telling him to take my mother back to the facility or he would need to start taking care of my mother. I sent him a list of things that needed to be done, things I discovered she needed when I tried to care for her in my home. “I’m not a caregiver,” he replied. “I just want to hold my friend’s hand as we go through hell.”

Oh, for fuck’s sake, GROW UP! You better do more than hold her hand, you asshole!

Two days later, Jack calls me sobbing. He “overestimated” himself, he said. He couldn’t take care of my mother. He said more, but honestly I have no idea what he said. He was blubbering. He was hysterical. But, as I discovered when I went to Mom’s house, she was NOT going back to the facility. She refused. She wasn’t going anywhere.

And that’s where we still are.

So what does all of this mean? It means, that in order for my mother to be safe and in a place that I know will give her meds and feed her nutritious meals and be there to help her bathe and remind her to change clothes and provide things for her to do besides stare at the television, I must become her guardian. I must fill out applications for other facilities and make phone calls to Adult Protection Services (again) and make appointments to visit facilities and do more paperwork for financial assistance. I must go to court and officially become her parent.

And you know what?

I really don’t want to.

I’ve been dragging my feet with the court piece. I have essentially been my mother’s parent for a few years now–paying her bills, taking her to appointments, and while she lived with us, making sure she ate and giving her meds and cleaning up after her. But once she moved to the residential care facility, I didn’t have to do any of that. I knew she was safe. I knew she was being taken care of. Whenever I visited or called, she was doing well. She really liked a few residents, she occasionally partook in activities, she was ok. I knew she wanted to be home with her cat. I completely understood. But things weren’t good at her home. Things ARE NOT good at her home. So for two months, I didn’t have to be my mother’s parent. I got to be my son’s parent instead. And now that the tide has turned once again, I’m not ready for it. Well…no. It’s not that I’m not ready. I just don’t want it.

I’m angry. I did what I was supposed to do. I tried to help my mom by taking care of her, then when that wasn’t working, I found people to take care of her better than I could. Then this Jack goes and does what I suppose he thought was the right thing, but all it’s done is hurt everyone involved. I have never in my life, felt such rage. I had never fantasized about killing someone before, but Jack changed all of that.

I’m frustrated. The amount of paperwork I have to fill out seems to have doubled. I peck away at it occasionally, but I know the end result of all of this is not going to be enjoyable. Once I become my mother’s guardian, if she still refuses to leave her home, she’ll have to be physically removed. I don’t know what that will entail and I really, REALLY hope I don’t have to find out.  And through all of this, I really, really just want to talk to my mom. I’m trying to do what’s best for her. Is this it? I have no idea. It’s either safe or happy. It apparently cannot be both. At least not for her.

This is the reality of taking care of a parent. It’s fucking awful. Now, not everyone will have this kind of horrible story. Some will have parents who have already planned everything beforehand. Some will have parents that willing go to facilities (which my mother did, then changed her mind). And some of you, like me, may have a parent who has hooked up with an incredible loser that will destroy any good thing you’ve done for your parent.

If that latter example is you, then just know that you’re not alone. Know that others have traveled or are traveling the journey and although it’s worse than riding a crowded Greyhound bus cross-county with a backed up toilet, there is help. Not a lot of help, and the process is extremely slow, but eventually things will change. I can’t say for the better because I’m not on the other side yet. I’m hoping for better, especially for my mom. And if we get there, I’ll be sure to let you know.

alzsucks