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

 

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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

 

The Oscars

My brother and I started watching the Oscars together when I was in junior high. The first one I remember watching was when Out of Africa destroyed The Color Purple with their wins. Phil and I were shocked and really disgusted.  We were both like, “Wait…what just happened?”  A boring white film just defeated an amazing black film? Yup. That’s what happened. We both love Meryl Streep, but come on. Whoopi should have that and we all know it.

And that’s how some of our conversations would go. (Or we would talk about some of the outfits. Remember Bjork and her swan dress? We had our mouths open for that one then just kept repeating, “What the fuck?”) But mostly the Oscars was a way for Phil and I to eat yummy food, make fun of and drool over many of the Hollywood folks, and just talk.

Originally we tried to have Oscar parties. We would invite a few friends, usually his friends, and our partners. But that died off pretty quickly and it became just my brother and myself. And I loved it. I looked forward to this every single year. There were a few years, of course, when I lived in other states or Phil lived in southern Maine, and we didn’t even attempt to get together. But for the past 15 years, it’s been a pretty consistent event for us.  One year, Phil drove home from my place, only 3 miles away, and the snowstorm was so bad it took him 30 minutes to get home. A few years back neither one of us could get ABC on our tv, so we called each other and watched some of the Live Backstage stuff so we could find out who won and see what they were wearing.

Last year, we watched the Oscars from Phil’s hospital room. We got permission from the nurses to let me stay late and since Phil had his own room, they closed the door so we could be as loud as we wanted to be. I mentioned it in one of my blogs last year, how it was one thing that made me so happy last spring. We may have watched the Oscars from the hospital, but he made me laugh hysterically, as usual.

My brother was the one who typically watched every movie (or close to it) that was nominated. He’d keep me up on what was happening. We would have our ballots ready and whoever had the most right at the end of the night had bragging rights. It didn’t really mean anything, just something fun to do.

But this year?  How can they even show the Oscars when Phil can’t be here to watch it?

I didn’t realize how much I had been dreading the Oscars. I’ve been thinking about the food Phil and I usually made for it–homemade pizza or guacamole or veggie chili–and would I bother? And then Phil’s partner came over yesterday with a jar of homemade salsa that my brother had made. The grief hit me so hard that I dropped to my knees. Sobs wracked my body for about two minutes, then I was able to get up and move again.

And that’s when I decided that I would, in fact, still watch the Oscars, ballot in hand, while eating salsa that my brother made with his two large and lovely hands. I have no doubt that I will cry throughout much of the broadcast, just like I’m crying as I type this. I will think about the funny comments he’d probably be saying about the dresses and the people. And when the Academy shows the montage of all the people that have died last year, I will think of my brother and how his picture should be there, too.

codpiece

 

 

 

The Big Scary World

briaroceanI’ve always loved this photo of my son. He wasn’t quite 4 years old when it was taken. It always scares me a bit to look at it, thinking of my boy going out in the big wide world, having to face some challenges alone but also having to handle problems I never even imagined.

This past year my boy has had to deal with more than his fair share of sadness, despair and hard times. It’s one thing to think that I will never be the same after my brother’s death, but I’m 44 years old. To realize that my 10-year-old will never be the same is an entirely different story. He certainly has sad days but he also has more anger than ever before. Just this week, the topic came up about saying goodbye to someone before they died and my son started to cry and spit out, “Just like I never got to SEE someone and say goodbye!” I started to sob right along with him but held him tight against me. I told him how sorry I was, but I also told him that his uncle would never, ever forgive me if I had let my son see his uncle in the hospital hooked up to all of those machines. Phil didn’t want any of us to see him that way.

As a parent, I often wonder what my child can handle and what he can’t. I want to believe him when he says certain things don’t bother him or that he really can do this or that. He told me that sometimes when my mother lived with us, it was ok.  And sometimes it was, but the relief that kid showed when his grandmother moved out was unmistakable. And I don’t have any doubt that seeing my brother the way he was on that last day would have been horribly traumatic for my son, because it certainly was for me.

For whatever reason, I thought a lot about that day today.  I couldn’t tell you what triggered the memory, but there it was. I was actually in the dentist’s chair when it trickled through my mind and I had to hold back a sob while keeping my mouth open so the hygienist could clean my teeth. Really not the best place to have a mini breakdown.

Will my son always wonder and possibly regret not having those last few moments with his uncle? I tried to remind him this week of his last conversation with Phil. It was the same day I had my last back and forth conversation with him. He was in the hospital and my son was in Florida visiting his grandparents. I brought my laptop into the hospital and my brother and son talked via Skype. They chatted about the weather and my son showed his uncle some YouTube video about a video game and they joked around for a bit and they told each other that they loved each other. They said what mattered.

I know I don’t have this parenting thing pinned down yet because I’m still making mistakes every damn day and I’m not sure I’ll ever know what good or harm I’ve done to this poor kid. I’m just trying to listen to him and love him and do what I think is best for him. I think I’m doing and saying what matters.

That’s all I can really do, isn’t it?

 

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?

 

 

 

 

Walking the tightrope

After 2017, it’s difficult for me to think about what the next year will bring. It will be the first year I’ll begin without my brother. There are still so many “firsts” our family has to live through without him: the Oscars (last year I watched it with him in the hospital), his niece and nephews’ birthdays, Mother’s and Father’s Day, our shared birthday party (his birthday was 6 days after mine). Thanksgiving was sad and weird. Christmas was fucking horrible. The family Christmas get-together was nearly as bad. We’re all faking it until we make it, but not one of us is doing a very good job. We’re lost and haven’t figured out where to go.

When I started to think about resolutions for the coming year, I thought maybe I could try to climb out of this darkness. Maybe this journey could be something I work towards. But what I’ve come to realize is that this pain and darkness I feel? It is now a part of who I am. It won’t always feel so intense, but losing someone you’re close to can only change you.

I know I’m still going through the grief process and I’m certainly at the angry stage now (and have been for a while) but my grief feels double or maybe even triple-fold. Having Mom live with us has been unbelievably stressful in many ways. I grieve for what our lives were before she came here. I’m angry about certain situations that we’ve had to endure. That probably sounds really shitty and selfish, and maybe it is, but I realized that I was spending more time taking care of and spending time with my mother than with my son. And that, my friends, is not ok.  I have apologized to my boy and promised things will change. And I’m working on that now. But that promise will bring more grief for my mother and for me and for what her life used to be.

So what will 2018 bring? I just don’t know. I don’t have a whole lot of hope for much right now. I do *wish* for peace for our entire world, for my friends and family, and for me. But right now the only peace I am able to find is either in a candy bar or a glass of wine or in a pipe. And that isn’t really peace or contentment or anything real. Yet it’s how I have to survive at the moment. Maybe in another month or so I’ll be able to find some balance so I can throw all of these crutches away.

tightrope

Balance. Balance is what I long for. Sanity would be good, too, but I won’t push it.

Good luck to you all, my friends, in the new year and may your dreams, not nightmares, come true.

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.