Boundaries

The scene at my house this evening, minutes after arriving home from work:

Husband: Hey, hon, do you still have some reusable grocery bags I can leave in my car?

Me: Oh! Yeah, I have some right here. I’ll go put them in your car right now so I don’t forget.

Husband: No, no, you don’t have to do that.

Me: It’s no problem. I have to put these cds in my car anyway. I’ll be right back.

I trot out to our driveway, put things in my car, open his car door to place the bags in his passenger seat. Then I find this on the floor:

I flipped the package over to look at the date. Was this left over from before his heart attack when he was eating loads of junk? “July 9, 2021.” Last Friday.

I slowly walk back into the house with this fried chicken bag pinched between my fingers. My breath is getting heavier with every step. Cue the cartoon steam exhaling from my ears. I walk through the door and put the bag in front of my husband’s face. With a clipped tone I ask, “What the hell. Is. This?”

Husband looks slightly shamefaced but not nearly enough. He’s smiling a little, but that nervous smile he gets when he knows he’s fucked up and got caught. I may have been afraid to yell at him a week ago, worried he’d have another heart attack. I certainly wasn’t scared today. I lit into him. When our son asked what Papa did, I showed him the bag with the fork still in it so he could eat in his car without anyone knowing. The boy just shook his head.

I raged for just a few minutes. Told him that it hadn’t even been 4 weeks since his nearly fatal heart attack. 27 days, in fact. “You couldn’t even go one fucking month without fried, fatty food?!?” I left the room to put my sneakers on so I could take a walk to cool down. But before I left, I stomped back into the living room, pointed my finger at my husband and said, “YOU are not allowed to kill yourself. I am the only one who gets the pleasure of killing you!”

Ok. Not my finest hour, but it felt good. And we both ended up laughing because it was so absurd and sounded exactly like me. Then I still had to leave the house because I was pissed.

But you know what REALLY upsets me about this? The night before he ate that fried chicken, he had a scary episode. He went to bed, but then came back to the living room just a minute later and said he couldn’t lie down. His stomach was bothering him, which was one of the signs he had before his heart attack. So he sat in his recliner, and I asked him if he’d like me to stay with him. He said that he would and took my hand. “Once I start snoring, you can go to bed if you want. I’ll be ok by then.” So I kissed him, turned out the lights, got blankets for us both, and lay on the couch listening to my husband breathe, cough, and sniffle. Eventually he slept deeply and I went to bed. It was a frightening time, yet he trusted and loved me enough to ask me to stay, which I know is a great gift.

And then…he ate the fucking chicken.

As a caregiver, one has to know when to draw the line or when to say, “Ok, big boy, you can make the phone call to your cardiologist to find out when they’re going to look at your other blocked arteries.” (This is something I’ve been asking him to do for a week, and today his nurse told him the exact same thing. Should we take a bet on how long it takes for him to do it now?) Since Wal’s heart attack, my sister and so many of my friends have been telling me to make sure I take care of myself, to take some time for myself. I mostly have. But no one has yet said, “It’s time to stop taking care of him.”

Because we don’t do that, right? We try to squeeze moments out for ourselves which often causes more stress in the long run, but we never say to someone, “Ok, you can give up on that person now.” And why? Because what if that person dies or has a stroke due to their declining health and is bedbound or mute or paralyzed. How would we feel then?

GUILTY.

But…shouldn’t there be a time when we finally say, “I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.” Any person we are taking care of must take some responsibility in their own health if they are able. When I took care of my mother, I understood that she could no longer do this. She could make her own coffee and get dressed, but showering and eating well and taking her medications were no longer in her realm of tasks she could do. And after a few months of working full time and taking care of my son and my mom, I knew that I couldn’t keep caring for her without losing much of myself.

So what do you do when you’re taking care of your spouse or partner? I have a friend who is dealing with this on an even more intense level. I have tried to lend my shoulder and ear to her as much as I can, but I know it’s never enough. She’s given me loads of advice and listens whenever I need her to, but her caregiving tasks are much more serious and frightening. And her spouse is NOT able to care for himself much anymore.

But my husband can. And he needs to. I find his lack of respect for his health infuriating but also incredibly sad and unfair to me. To our son. Does Wal know and understand all of this and everything I’m feeling and what I wish he felt? Yes. He does. And if he doesn’t, he will when I read him this blog post. ūüėČ

The question remains: What do I do now? Do I throw my hands up and say, “Whatever. Do whatever you want”? Or do I say I will help you if you need me to, but I will not make phone calls for you or keep track of your sodium or fluid intake? My therapist and I just had conversations about what kinds of boundaries to set down, and the latter seemed the most appropriate at that time a week ago, but now? Now I’m angry and hurt and not sure what steps to take next.

I’m already tired of being angry. I’m not apathetic because I’m too emotional about this. I think I’m sad, frustrated, and disappointed.

Maybe I just need to find some patience and let him be and hope he finds the path towards good health. He doesn’t need to die trying to look for it because it’s right there in front of him. I’ve been holding out my hand to show him for a long time, but now I guess I just need to go on ahead and hope he catches up. I’ve left breadcrumbs and neon arrows to guide him, so let’s hope he just opens his eyes.

Caregiving vs. Self-Care

When you’re taking care of someone, it feels much like being their parent. You worry about them more often than not. If they don’t feel well or are having a rough day, you feel like they do. And when they admit their fear about what’s happening to their body and their life, you feel just as frightened.

This weekend has been another rollercoaster ride for my household. Our son had his wisdom teeth out on Friday and yesterday he was just ok, but this morning he was in pain and had been up most of the night. Wal had gained 2 pounds overnight, which is not a good thing when you’re a heart patient. He also didn’t feel very well much of the day. I didn’t feel good when I got up, but I kicked into crisis mode after realizing my son was hurting and my husband wasn’t well. Got the kid on a pain med schedule and my husband already took the medicine he needed to work on the extra fluid in his body. So although I didn’t feel great, I went for a run in the heat and humidity anyway. I needed to physically put one foot in front of the other so I could do it figuratively when back at home.

At one point this afternoon, both my husband and son were napping. It reminded me of the times when my boy was a baby and although they always said to nap when your baby naps, I would always clean. Which is exactly what I did today. I listened to an audiobook and swept and mopped and cleaned bathrooms and did laundry. I get like this. It’s like I’m preparing for the next crisis, so maybe my house will be clean when it arrives and I won’t feel as much stress.

Folks talk about self-care and have really been driving that home to me over the past two weeks. And maybe I should have rested when my family did. But in my own quirky way, cleaning the house was taking care of myself. I love that when I walk on my kitchen floor now, my socks don’t stick to it. ūüėČ

Once my son was awake, he felt a bit better. I gave him some yogurt and he planted himself at his computer desk to play a video game. I checked on my husband, who was still napping, then made myself a margarita at 4 o’clock in the afternoon. Might not be the best choice of things to do, but I curled on the couch with a book and my drink and relaxed for 15 minutes. It was pretty fantastic.

But then I got up and checked on my husband again. He had been sleeping for nearly 2 hours at this point. I watched his chest to make sure he was still breathing—-just like I used to do with my son when he was an infant. Wal started to stir and caught me staring at him. I asked if he was ok and he said yes and wanted to know the time. I told him and he said “ok” and rolled over. I figured he’d get up in a few minutes, so I went to the kitchen and started making a salad. An hour later I went to our bedroom again. I was trying not to freak out. He woke up this time and we both wondered aloud, “Is this ok?” Is taking a long nap alright? Does it mean something besides being tired?

We are stumbling along this path, not fully understanding where to go or what to do. Everything keeps changing. His blood thinner meds have changed every few days because his blood wants to clot and right now that’s not a good thing. We weren’t really sure how much sodium he’s allowed to have until a friend whose husband went through this last year gave me an idea of what the amount should be. And just today I found the answer in his pile of paperwork he came home with. (I thought I had read it all but obviously didn’t take it all in.)

This all still feels…surreal. Exhausting for sure, and unfamiliar yet a bit familiar at the same time, but not enough to actually know what we’re doing.

For now, we’re doing our best to take things one day at a time and one issue at a time. We’re also still trying to enjoy the little things that bring us joy. Whatever they are. I hope you do the same, friends. Live in the moment if you can. ‚̧

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.

 

 

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.

 

Lost and Found

If I’ve learned anything this past week, it’s that Alzheimer’s Disease slowly eats away one’s independence, dignity, eventually humanity. It not only destroys the individual, but it¬†injurs and scars the caregiver and the family.

Last week ended with me losing my mother in a hospital (she can seriously boogie with that walker!) and also discovering at least 6 months worth of unopened mail in her home, including financial matters that should have been tended to. And this week began with me visiting the bank and crying at the desk of a bank employee.

Today I told more people about my mother’s condition. I told people that may only be on the periphery of her life, but ones that need to know why she doesn’t seem like¬†her typical reliable self. My mother’s reputation has been in jeopardy for the past year, and maybe that doesn’t matter to some. But I know if my mother was in her right mind, it would matter to her. She’s been a respected citizen of our little town for nearly 50 years. She’s always been responsible. She paid her bills on time, mostly obeyed the speed limit and every single person I talk to says, “She’s such a sweet woman!” I don’t want anyone thinking less of her because I didn’t pay attention to that growing pile of mail in her living room. If I had done my job, I would have helped her open that shit at least two months ago.

mailBut I didn’t. I didn’t want to. I was afraid. In the back of my mind, I knew my own responsibilities for Mom’s care would increase. I knew I would have to have uncomfortable conversations with¬†Mom about finances–her last bit of true freedom. So I didn’t do anything. I didn’t do anything until….well….until I did.¬† I had to stop putting it off and just ask Mom if we could organize her mail a bit. But something so simple is still not easy for me to do. To this day, I still dread the thought of my mother being angry with me. She put fear in all her children, and although I can’t speak for my siblings, she put the fear of disappointing her, in me.

So now when I need to ask my mother permission to do something, like open her mail,¬†I’m waiting for my mother to bite back, to tell me “no” and that she has everything under control. But she never says that. Not anymore.¬†She knows she no longer has everything under control.¬† And as much as¬†it pains me to say it,¬†I guess that’s my job now.

Just Awful

Yesterday morning, as I sobbed and hiccupped on my couch, I told my husband I was a horrible caregiver. “I’m too selfish to do this,” I cried.

Just when I think things are ok, they’re really not.

My mother has Type 2 Diabetes, and before she had dementia, it wasn’t¬†a huge problem. She didn’t eat very well, but she took her medication and it was manageable. Then we realized that she hadn’t been taking any medication for nearly 5 months,¬†things were bad. So my caregiving duties were upped a bit and I started religiously visiting my mother at least once a week to fill her pill container and to chat and just see her. Yet in the past month,¬†the situation¬†started to decline. Mom just hasn’t been taking her medication. Maybe twice a week, but that’s all. I don’t know why, but something changed. The first week it happened, I hoped it was just a bad week. And the next week she did take all of her meds, so I thought indeed it had been a snafu. But then for the next 3 weeks, she only sporadically took everything she needed to. And only once did I say, “Mom, you really need to take your medicine, ok?” But why? Why did I only ask her once? Because although I am 43 years old, I still don’t want my mother mad at me.

I am very rarely the recipient of my mother’s wrath. My sister has been the unfortunate one in that scenario and it can be awful. You can practically eat the silence that invades the room when she’s angry. It’s thick and dark like molasses. Or the look she gives you. Christ, a person could burst into flames if they get that look.

But¬†I mean, really, who wants their mother mad at them? No matter what age?¬†But….I know I need to ask my mother if she’s taken her pills…and I need to ask every day….which, in my opinion, is completely awful.

This all came up at Mom’s doctor’s appointment a few days ago. Her glucose levels were off the charts and Mom’s healthcare provider asked my mother if it was ok if I asked her to take her pills. “I know you care about me. I know why that’s the reason you’re asking, so it’s ok,” Mom said.¬†So that’s what I’ll do.

And then I get a late night phone call from the on-call doctor at Mom’s doctor’s office. He tells me Mom’s glucose levels are in fact over 600 and she should go to the ER and get insulin. So…here I am, 35 minutes from where my mother lives. I know that if I call her and wake her up, she’ll be confused and probably hang up on me. If she’s still awake, more than likely she will refuse to go anywhere because it’s late at night and she’s not going to wake her friend and have him take her. So…I don’t call my mother. I wait until the next morning and explain the situation. She says she’ll go to the ER. She then calls me back 10 minutes later, asking what she’s supposed to do at the hospital, what to say, what will they do. Then calls back one more time to say she’s leaving for the ER, but says, “But I’m not staying!” I reassure her that they’ll probably only give her an IV for fluids and some insulin then she can go back home. Which is what they did. They brought her levels down significantly and she’s ok.

But I burst into tears after that last phone call. The self-doubt and guilt completely overwhelmed me. Should I have called her the night before? I could have driven over there and taken her, right? Why didn’t I at least give her the option the night before? I want to say it’s because I knew she wouldn’t go. But I don’t really know that, do I? I was tired, I was on my way to bed, and I didn’t want to deal with one more thing.

Do other caregivers go through this? Do they do stupid, awful things and continuously wonder what the hell they’re doing? This is so much like being a parent, but not. I feel like I have the same amount of responsibility as with my child, but yet more urgency and less power. I am still my mother’s child. I don’t want to make her angry or upset and yet I don’t want to fail her, either. And if I don’t step up my game, I think I’m going to do just that.

 

The Right Stuff

Taking Mom to her neurology appointments are emotionally exhausting affairs. They make me feel very uncomfortable. It is obvious that in this particular office, I am my mother’s parent. I am asked questions about her health, her memory and the level of her confusion.¬† Don’t get me wrong, this is done in a very respectful way. The doctor asks my mother if it’s ok to ask me questions, and so far, my mother has always replied very happily, “Absolutely!” I think she likes that I’m in the hot seat¬†before she is.

Then the doctor turns to my mother and asks her a few general questions about her health or her habits before getting into more serious memory testing. Meanwhile, I sit diagonal from my mom and stare at the floor. I look up occasionally to see the reactions of both the doctor and my mother, but mostly I just try to shrink into myself and disappear. This seems like such a private encounter to have to witness. It feels like I’m watching my mother be interrogated and she appears very vulnerable during these interviews. Sometimes¬†tears run down her face¬†while she answers the questions.¬†I desperately want to leave the room while this is going on, but I have to stay. I give the doctor clues when Mom’s answers are not true or just a bit off. Like today. The doctor asked Mom if she ever goes to the library to get reading material. She book-mobilereplied that she didn’t, but the bookmobile comes around once a month.

Ummm…..what the?¬†We haven’t had bookmobiles in this area for about 40 years. No joke.¬†It was such a random thing to say. I was surprised she didn’t mention the library where I work. But something about that bookmobile¬†memory was just floating around in her brain and it popped out. So bizarre.

Yet most of Mom’s other answers to the variety of questions? FANTASTIC!¬† At the end of the doctor’s interview, she told my mother how impressed she was with how she did. At this point in the year, Mom should have been on this Alzheimer’s medication for 6 months. But due to the snafu we had this summer, she’s only been on it for a month. The doctor knew about this and yet Mom’s memory and level of confusion had improved tremendously since January when she initially saw the doctor. Let me say that I love this neurologist. She’s always brutally honest, there’s no sugar coating for this lady, and yet she conveys empathy and compassion. ¬†She told us that she realized that last January’s appointment could have been a particularly bad day for Mom and today could have been a particularly good day. But even with that, Mom was more than keeping her own. She was actually improving. The Aricept that Mom is taking typically just maintains people’s¬†memory loss, or delays the advancement of the loss, but in 10% of the patients who take it the medication improves the patients’¬†cognition. The doctor said that Mom may actually be one of those¬†10%.¬† YES!!

*big smiles and clapping hands*

I know that everything can change very quickly. I know that most likely, there will be a day that my mother will not know who I am. But that day isn’t here. Not¬†yet. And it might be just a little further off than it was before. And that, my friends, is reason to celebrate.

Three cheers for a good day!

 

Duped

What do you do when you feel betrayed by someone you love? Do you get angry and lash out at that person? Do you stop talking to them? Or do you try and discuss the situation and attempt to forgive?

How about if that person has dementia? Then how would you react?

Today I took my mom to an appointment with her doctor. This was no big deal, just a quick check up to see how everything is going. The doc decided to check Mom’s blood sugar since it had been a while, as well as her A1c number. (If you’re not diabetic or don’t know one, the A1c number is basically a test to show how your blood sugar levels have been for the past few months. The test should be done every 6 months, but possibly every 3 if things are not great.) First the nurse did a quick test of Mom’s blood sugar–it was over 300.¬† For an average person, 100 or below is good. Then she tested Mom’s A1c. A 6 or 7 is good, and Mom’s was above 13.¬† In other words, it’s a shit storm.

After a little investigating and questioning both Mom and myself,¬†the doctor discovered that¬†Mom’s meds should have needed a refill at least 8 months ago. EIGHT MONTHS. The doctor turned from her nurse to look at both Mom and me. She tilted her head and had this smug yet pitying look on her face. I wanted to smack that look right off her face. Was I defensive? You bet I was. I fucked up, but I wasn’t going down alone. “So…how often are you supposed to check Mom’s A1c?” It had been nearly a year since they checked it, so we all fucked up.

Now the question was, why was her blood sugar so bad? Was she eating well? Probably not, but that’s a given. Was she taking her medication? Mom certainly thought she was, as did I. That’s the one thing Mom had always been so good about was taking her meds. Or was she? Did I just believe her because she’s my mom and she’s so damn convincing? Or because I didn’t want to take on any more responsibility?

JACKPOT! Finger on the nose!  You got it, Holly!

I wasn’t ready.

So. After this visit, I took Mom home and we went through her medications. She actually did have some of her diabetic medication left from over a year ago, which means she only took it sporadically. But her other meds? Oh my god, her other meds. Like the pills she takes for dementia?

Not one pill had been taken. Not one. In 5 months. Not one.

I am an idiot. I am not a good caregiver. It’s obvious to me now, in fact, that I suck at it.

wrong

I’ve wanted my mom back for so long and kept hoping things would just stay at this even keel for years and I could keep pretending that things were good and I was just her daughter and not her housekeeper or nurse or parent.

I have to stop thinking that way now. It’s all a bunch of damned excuses!!¬†I have to suck it up and help her.

I don’t blame my mother for this. Not at all. For just a moment I felt duped. Like she had stopped taking her medications on purpose. But that feeling only lasted a moment. I knew it wasn’t true. I knew the true deceiver in this situation was me. I felt a betrayal, but it was on my mother’s behalf.¬†I didn’t keep her safe like I was supposed to.

You know, I realize how selfish I’ve been and still am. Even today after all this. I know I need to go over to Mom’s place once a week and make sure her meds are all set and ready to go for the week. It’s not a huge deal.¬†It means either I need to take my son over on the weekend after his soccer game or skip a morning exercise routine during the week. When I say it out loud, it’s so little I’m giving up to help her…but why does it feel so big?

I feel like I’ve taken one more step closer to….I’m not sure to what or to where. Maybe just feeling like I’m more of a parent now? Like before I was parenting a teenager and now we’ve gone backwards and it’s closer to parenting a Kindergartner?¬† Or maybe it’s because it is another step.

It’s one more step towards the day my mother won’t know who I am.

 

 

 

Surprise!

Visiting my mom these days tends to fill me with trepidation. What will I find this time? Each visit brings something new–cuts on her face from falling out of bed, an unpaid bill with possible consequences, confusion about the location of her¬†hairdresser she’s been seeing for nearly 20 years.

At this point,¬†Mom still knows who I am and isn’t confused in any way about me,¬†but I worry that one day soon she won’t know my son. He’s growing so quickly and looks so much older already. I’m afraid that one day she won’t recognize him, and who will be more heartbroken when that happens? My son or my mother?

This last visit, though, I wasn’t worried about that. We already knew what special surprise we had waiting for us.¬†We had a task that needed to be accomplished. The search was on….to find Mom’s teeth.

Common-Dreams-Losing-Your-Teeth-2

Doesn’t this sound like a Janet Evanovich novel?¬† Crazy!

But it’s what needed to be done. Apparently¬†Mom took her teeth out sometime in the middle of the night. She found her bottom teeth somewhere WAY behind her bedside table, but no top teeth. So the hunt was on!

As my son and I looked under and in the couch, I started to wonder if he’d remember this one day and how he’d look back on it. Will he remember it fondly or just shake his head and think how bizarre things were? Or maybe both?

After the couch there was searching under the bed, behind the bed, under tables and bureaus and chairs. But still no teeth. And this, my friends, was over a week ago. Mom can chuckle about it, but I know it bothers her. She keeps saying how funny it feels not having her top teeth in during the day. Where the hell could the teeth be?!? She has a cat, and honestly, I even looked in the cat box just in case he dragged them in there. It would be horrible if they were in there, but at least they would have been found!

I am really trying to find humor wherever I can. I think when you love someone who has dementia, you *must* find humor and happiness wherever and whenever it’s possible. There are so many bad days and bad visits and dreaded phone calls, that when I have a good afternoon with my mom, I hold onto it with everything¬†I have. I must remind myself that there are still good times ahead. They might not be like they were before¬†and¬†they won’t be as frequent. There will be more good moments than good days.

But that’s something. And right now I’ll take it.

 

Picture this

As I¬†enter the yard, the lawn has been mowed and there are trimmed bushes in front of the house. When I walk into the small, but clean and organized home, there is no trace of dirt on the carpet or dust on the television. The kitchen floor is swept and Mom is at the counter whipping up a batch of cookies. Mom is a tall woman (5’9″ish), thin yet strong. It’s possible the house smells like cigarette smoke, but it probably also smells like chocolate and sugar and a hint of dish soap.

Now fast forward four years.

I walk into the yard with the overgrown bushes and am greeted with a trash bag on the¬†walkway that has been ripped open by animals. When I enter the house, I see a rug coated in dirt and grass, and Mom, now 20 pounds lighter with the look of a¬†frail wounded¬†bird,¬†is sitting in her favorite chair because her body doesn’t allow her to do much more. The kitchen floor is also dirty, and when I open the trash can to throw something away, tiny flies dart out at me as I try to slam the¬†lid back down while covering my face. I can only smell cigarette smoke. Nothing more.¬†Until I go into the spare room¬†where the cat’s litter box is stored.¬†There is no more clean litter and the box is filled with urine and feces. The cat has done the best he could with what he had.

I don’t cry. Not yet.

I sweep the kitchen floor and vacuum the rug while Mom tries on the clothes I bought her¬†for her birthday. I scoop the cat box as best as I can and try to leave the little guy with something until I can get back during my lunch break with fresh litter.¬†I talk to Mom for another minute before I have to leave for work. It’s obvious she’s in pain today. The dark half-moon smudges under her eyes tell me she’s hurting. She doesn’t complain, just states that she hurts. I give her a hug and tell her I’ll call her in a bit before I come back over in the afternoon. I take the trash out on my way to my car, and I have to hold my breath as I open the large trash can. It not only stinks, but maggots drip from inside the cover onto the garage floor. I stuff the bag in and try not to retch.

As I drive the 15 minutes to work, I take several deep breaths.¬†When I get to work, I ask my boss to smell me because I think I smell like smoke and/or cat pee. She tells me I do smell like smoke….and then I cry. This wasn’t¬†a “silent, tears streaming down your face” kind of cry. This was a blubbering, snot-inducing sob, while trying to tell my boss why I was so upset. Mom was actually doing pretty well that day. Her memory was decent and although she was hurting, she could still get up and walk around with her walker.

But…she wasn’t my mom anymore.¬†I’ve known this for several years, but the great leap¬†in those two images, the stark difference in¬†“before” and¬†“after”¬†finally became real to me.¬† I know she is no longer the baking, clean-freak I grew up with (and became!) but is now an old woman who can no longer¬†care for her home¬†like she used to.

I am the person responsible for cleaning it now.

And I hate it.

But I think she hates it, too.

She always thanks me profusely whenever I¬†go over and for some reason, I always feel a little guilty when she thanks me like that. Admittedly, if my visit is before work, I’m running around her house, cleaning up, not sitting down and chatting much, because I need to get to work (and typically this is after taking my son to school and running around my *own* house getting supper in the crock pot and doing laundry and who knows what else). I’m sure Mom can feel my tension but also understands¬†my “I need to get his done” attitude, because that’s how she always was while I was growing up.¬†I do¬†know¬†Mom appreciates my¬†help, but I also know she’d give anything if she could do it on her own again.

And so would I.

Does that make me selfish or a bad daughter? Probably. But I have to be honest, at least with myself.¬†B_wears_her_heart_on_her_sleeve_by_fangedfemut I also know I need to¬†come to terms with all the changes. Over the past week I have had multiple emotional outbursts, some with tears and others in anger. No one¬†has been immune–my family, my co-workers, my friends. I’ve either yelled at or cried on nearly everyone.¬† Wearing my heart on my sleeve is an understatement this week. I have felt just so….exposed, with every emotion I have felt being raw, painful.

 

I’m aware that the stress I have felt isn’t just from Mom’s situation but also from other health-related concerns within my family. Yet I have no control over those problems. I can only hope and send good thoughts and say encouraging words, but there’s nothing else I can do. But with my mom? I may not have control over the deterioration of her mind and body, but I can do little things like vacuum or sweep or bring her good food, and I need to take some consolation from those few things I *can* do. I need to give myself¬†a break and not get angry or frustrated when I walk into her home and it’s not like it was a few years ago. This isn’t her fault and I need to stop acting like it is.

I need to remember that Mom is still my mom and just try to forget all the rest.