caregiver

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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!

 

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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.

 

 

 

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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.

 

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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.

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Creating Dignity

“Can you tell me what happened? Can you tell me why you went to the hospital?” the doctor asked my mother.

Mom starts to turn to me to refresh her memory, to fill in the gaps, until the doctor firmly said, “No. I don’t want you to ask your daughter. I want YOU to tell me what happened.”

I was sitting beside my mother with my 8-year-old son on my lap. We were packed in a corner in the small doctor’s office. While I wrapped my arms around my son, I stared at the doctor and in my mind I kept willing my mother to remember. “You can do this, Mom!” I kept saying to myself. But when I glanced at my mother’s face, I could see the color rising in her cheeks. She was staring at the doctor, too, but just kept saying, “I don’t know. I…I don’t know.”

When Mom finally turned to me, I put a hand on her shoulder and said, “Remember, Mom? You were driving to Hartland and you started to shake?”

“Oh, YES!” my mother nearly shouted. I was nearly expecting her to raise her fist in triumph as she recalled her little escapade that ended with a trip to the emergency room. And as she was telling the story, my son whispered in my ear, “I didn’t know that’s what happened.” He looked scared. I nodded and held him tighter.

Although Mom’s was not a good story, I was so happy she could remember it. During those few moments when Mom looked so embarrassed and helpless, I would have done anything to make her feel good again, to not feel ashamed or scared.

I’ve thought a lot about that doctor’s visit today, wondering if when I take my son to school tomorrow, *he’ll* be the one who needs a little protecting. His tics have been quite calm over the past few days, but today as he talked about his upcoming first day of school and how excited he is, his tics started to increase. He’s been blowing on his hands a lot and raising his arms. I remember last year on the first day of school, I cried when I drove home after watching him tic like mad as we walked into the classroom. His teacher at least knew about the tics, but this year, we haven’t even met the teacher.  Fortunately most of his classmates seem to “get” my boy and don’t seem to care about the tics, but there’s always someone new to explain it to, or some little shit on the bus who is looking for a kid to pick on and ridicule for the school year.

As my son was getting ready for bed tonight, he was telling me about all the things he wants to tell people at school tomorrow, like about the Youtubers he thinks are cool and he wants to get his friends to subscribe to those Youtube channels. He wants to make a sign to have on the playground, telling people to come to him so he can tell them all about these great gamers. And as my boy told me all of this, I was cringing inside, just hoping that no one beats him up, and also hoping that he will find his tribe sooner rather than later. Most geeks I know didn’t find others like themselves until they were at least in high school. I want my son to find his people NOW. I want him to feel like he belongs with others that he is not related to. I want him to feel safe and happy, not ashamed or scared of who or what he is.

I want to make two of the people I love most in this world to feel good about themselves and to feel safe and happy. That is all I want to do.

It’s really not that much to ask, is it?

 

 

 

 

 

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The changing definition of ME time

Typically, Sunday is MY day. It’s the one day I try not to leave my house except to go for my long run, and it’s the day that I do some housework but try to read a lot and play games with my boy or bake or do whatever the hell I want to do. It’s the day I try to care of myself so I’m prepared for the upcoming work week.

None of that happened this week (or last week). We had a few drama-filled days and hospital visits due to my mother’s health and by Friday night I just wanted to sleep for a very, very long time. But since yesterday was my 18th wedding anniversary and we had been planning to go to the coast and I really, really  needed a day away from here, I went. My brother was kind enough to do a “Mom visit” and convince her to sign an advance health care directive (success!), so I was able to have fun with my family and not worry about anything else.

And I think because of our little daytrip, this morning I was able to get my butt out of bed at a reasonable time and plan for the day. The first thing I needed to do? Look up all of my mother’s medications to find out what they’re for. I was shocked to discover she’s been taking three different blood pressure medications. Does she need to? Is she really supposed to? It’s something I’ll ask her doctor next week, but since she just got out of the hospital for what they *think* is strange effects on the body due to hypertension, then maybe she is supposed to? I have no friggin’ clue.

The next thing was making a trip to the drugstore to buy my mom a proper pill dispenser. Any idea how many of these things are out there? I didn’t either. So I bought several until we figure out what works best. Then it was off to Mom’s house.

You know, she was having a really good day. She’s weaker than she should be, but her mind was good. While we talked, I swept and mopped her kitchen and bathroom floors then made her some lunch. We didn’t talk about a lot, just chatted about her cat and a little about the news. Before I left, we made a list of things I would pick up that she needed and will deliver later this week.

I went to several stores to get the things Mom needed and groceries for my own home, then as I was leaving town, I stopped to get an iced coffee. Yet as I sat at the drive-through, I asked for an iced cappuccino instead (something I used to treat myself with when I was running nearly 20 miles a week) and when the lady asked if I would like whipped cream on it, I nearly swooned. Once I got my drink, I parked in a lot and sipped the delicious concoction and closed my eyes. I took one moment for myself. Just me. I thought about nothing, only how cold the drink was and how rich the cream tasted. And on the way home, this song played on the radio. I turned it up as loud as it would go, and sang my heart out.

“If you close your eyes, does it almost feel like nothing changed at all?”

Sometimes. Sometimes it really does.