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

 

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?

 

 

 

 

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.

 

 

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.

 

The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!