Posts Tagged ‘stroke’

The New Now

Well, to be honest, life’s been difficult. Mom didn’t recover like they said she would. She kept getting worse and worse, so we took her back to the hospital last Saturday. It feels like it was five years ago.

No one has a diagnosis for us. They didn’t see evidence of a new stroke. They didn’t see evidence of cancer in the brain. There’s no evidence of anything. They think maybe it’s a delayed side-effect of her full-brain radiation, or maybe there are cancer cells in her spinal fluid, but no one knows for sure and the oncologist doesn’t suspect either. Not knowing is the worst part.

Mom can’t do much on her own anymore, which is highly, highly frustrating for her. She needs help standing, walking, getting to the bathroom. She can still eat for herself, which is good, and she can still speak, though she sometimes has problems with complex ideas and expressing herself well.

I had the chance to speak frankly with her twice at the hospital. I said everything that I need to say, including that, whatever happens, I’ll be okay and she will always be with me. I was talking with her last night, asking her why she looked so down, and she said that it seemed like there was always one more thing put on her. I said, “I thought the Lord doesn’t put things on people unless they can handle it?”

“That’s what the Bible says,” she replied.

“So you must be a very strong person.”

“That’s what people keep telling me.”

“And what do you believe?”

[pause] “It must be true.”

We’ve had some rough moments, and some embarrassing moments, but I keep telling her that we’ll get through this. And we will.

Dad is stressed, understandably. He’s having to deal with taking over the household and caring for a person who has cared for him for so long. Just last night, I noticed that they were low on laundry detergent, so I said I could order more since I know where mom gets it and I have her login information. “I need to know that stuff,” he said, and then I realized how much mom does that he might not know about. It’s going to be a rough transition.

One of the problems is that this was so sudden. She wasn’t doing great, but this last turn for the worse was more like a turn off a cliff. We just weren’t prepared. Dad did find someone that he likes enough to let help for a few hours a week…her name is Crystal, and she’s going to start by coming for a couple of hours in the morning every other day to help mom get up and showered and dressed and fed. I think that will take a little of the burden off of dad. I think Crystal might need to come more often, though. I guess they’ll figure out what works for them. He also needs a lot of help with food.

I’m scheduled to move out on Saturday. I feel a lot of guilt about it, but mom said that I should go because otherwise dad will learn to rely on me too much and will be even worse for it. I guess she’s right. I just feel like I should be there all the time. I’m strong enough to lift mom when she needs help getting adjusted on the bed. I cook pretty well, I think. I don’t mind cleaning her up (well, it’s rough on me emotionally, but I’ve learned that I can do it with patience and grace, which is what’s required). I feel like they need me there.

I’m finding I can’t concentrate on much anymore. Part of it is that I’m exhausted, and part of it is that my mind is always in multiple places at once…mainly, if I’m at work, my mind’s on mom at home, and if I’m with mom at home, my mind’s on the work I need to be doing. I also have to write the majority of my thesis this month, and that will take a lot of my time. It’s hard. I wish I could get paid (and trained) to be her caregiver. I’d do it in a heartbeat. I could probably take a leave of absence from work, but since I’m the breadwinner in the family, I don’t think that’s a very good idea.

But this is the new now, and we’ll figure it out somehow. Everything always works out. In the meantime, we do appreciate all of your thoughts and prayers.


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Life has admittedly been a bit hard lately. My new job keeps me busy all day (if I let it!), and I would be 100% thrilled about that if I didn’t have what seems like a million other things to do too. I’m struggling to find time to do my thesis research, which needs to be complete by the end of the month; I did recently find a great lead that makes me feel like I’m on the right track, though. It’s also been a struggle to fill a parental role at home.

I will take yesterday as an example. I blocked out some time over my lunch “break” (still me at my computer tied to email and IRC) to do some of my reading, and I was feeling great about all I had accomplished for work and school during the day. I was thrilled that I would have a relaxing evening at home to veg out and rest before starting early again the next day. I came home in a great mood. I walked in the door to, “Oh, I thought you were your father.”

“Sorry to disappoint,” I say.

Dad had gone into the hospital to have a minor procedure, and he should have been home much earlier, but his appointment was delayed. Mom had been cooped up at home alone all day (she still can’t drive, and she can’t do all that much on her own, so I’m sure she was stir crazy). Mom immediately went into telling me why she didn’t want to shop at Whole Foods (I’m afraid I’ve been overly aggressive about the eat-better thing, but I can’t stand to watch her killing herself anymore), and hearing all of her excuses (all of which boil down essentially to laziness or apathy) got me all riled up again. Then dad got home, and he needed prescriptions filled, but neither one of them could drive, so I had to go back out to the store to get those filled and pick up another one for mom.

So much for a relaxing evening.

Now, none of this is their fault, and I’m not writing about this here so you’ll think I have awful parents. This is just my new reality, and I’m having trouble adjusting. I love my parents very, very much. I wish I could do more for them. I wish I were more patient. I sometimes feel like they don’t realize how much I’m doing…or how much I’m doing for them. I don’t want them to quit asking me to do things for them; I love being able to help out, and that’s why I moved back, but I wish I could plan for these things. If I had known I had to go get prescriptions after work, for example, it wouldn’t have been an issue at all: I wouldn’t have set myself up to expect a free evening, and thus I wouldn’t have been disappointed. If I know I have to help with laundry, I can build that into my Saturday plans. If I know I have to cook…well, you get the idea. I know you will say that some things can’t be planned for, and that’s true. I wish it were just the exception instead of the rule.

Mom isn’t doing very well. She keeps ignoring the advice of her therapist and ends up doing things like falling on the deck. She’s a strange mix of stubbornness and apathy. She’s frustrated that her energy level is still so low. I wish she’d believe me that diet will make a HUGE difference.

Food matters, folks. Think about how you feel after you eat a huge burger and plate of fries. Heavy, greasy, and exhausted, right? Like you just want to take a nap? What about when you skip a meal? Get tired and grumpy? Or what about when you eat a candy bar? That rush and crash? And you still want to believe that food doesn’t matter?!

They did make an appointment with a dietitian, but that isn’t until September. Dad’s trying really hard, but they still end up with things full of junk like sucralose, which is a known toxin. The fact that they shrug it off bothers me. Sometimes I think it would be better not to care. There was this guy on the Biggest Loser last season…his son had basically disowned him, saying that if his father was insisting on killing himself with food, it would be better for him to start thinking of him dead now. That motivated the father to change. I wonder if that’s the last resort here. Nothing else I’ve tried seems to work.

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I’ve been neglecting this blog for a while. I’m not sure why. I think things were going very well for a while, so that’s part of the reason. I also finally made it down to NC, which is great. I’ve been here for over a month now. I don’t see as much of my parents as you think I would while living in their house, but it’s great to be so close and to have the chance to at least see them every day.

I guess mom decided that cancer just wasn’t enough, so she decided to go ahead and have a stroke. It started last a week ago last Thursday…she was walking to the mailbox outside and suddenly started veering off to the right, unable to straighten herself. She didn’t fall, though. She was fine until Friday afternoon, when she fell over trying to bend down to pick something up. She called the doctor, who moved her MRI up from sometime in August to 6/28 (we were all afraid it was another brain tumor). They told her that if she got worse, she should call and go to the ER.

Well, she was worse Saturday morning. She couldn’t stand up at all, and dad noticed that her speech was slurred. We called the emergency number, and they told us to come into the ER. Mom wanted to finish her tea and have her breakfast, so we went in after that. 😉

Mom told the ER folks that she was just there to have an MRI. She told me while we were waiting that dad had mentioned that he thought it might be a stroke, so I told that to the ER folks, and that sent them into a tizzy. They immediately got her back and gave her an EKG. After that, it was honestly quite scary. They got her into a room and swooped in, three of them at once, attaching things to her without saying anything. They put in an IV (just the apparatus; no drip), took her blood and her vitals, and then were out just as quickly as they came in. Then a nurse and a doctor took turns interviewing us before sweeping her off to a CT scan.

The CT scan didn’t show anything, but the ER doctor consulted with mom’s oncology team, who wanted her admitted. I ran home to get her some things and to pick up lunch for all of us, and by the time I got back, she was up in her hospital room.

They kept her from Saturday to Tuesday (which was dad’s birthday, so it was great that she got to come home and have some of the delicious walnut cake that I baked!). I took her meals as I could…we even had a kind of picnic with kebabs that dad grilled for us. They ran every test you can think of; I can’t even name them all. They never found out the cause. There was no sign of residual damage, and there was no sign of blockage anywhere in her arteries.

They sent her home and gave her a heart monitor that she has to wear for a month in case she does had a-fibs. They also put her on Lipitor, which I learned was not just for cholesterol, but to help veins somehow. The oncologist said this shouldn’t have happened and was unrelated to the cancer. Just very strange.

So mom is weak in her right side. She has trouble with her right leg, but that is strengthening. She can’t hold a pen in her right hand, which is frustrating. And her speech is slurred…sometimes she has trouble thinking of words, too. It’s pretty scary. I know it could have been worse, but this is ridiculous. She’s just gone through enough.

I learned some things about myself, too. While she was there, I helped her change clothes, go to the bathroom, and walk around, and I brought her food and fetched her things. I learned that I don’t think I’m patient enough to be a good caregiver. I’m not really able to give myself over completely. I still have an expectation that people consider how things affect me, and I don’t think that’s happening. I know it’s extremely frustrating for mom; I don’t fault her for anything, and I know she’s doing the best she can. It’s just me and my personality. I still want to be the kid, and, unfortunately, I think that time has long passed.

What DOES make me upset is the state of food in the house. I don’t understand how people can complain that they don’t feel good, don’t have energy, feel nauseated, etc., and then constantly eat fried food, rich desserts, thick mayonnaise-based sauces. I wish I had the resources, time, and energy to cook all of their meals for them. I understand that the major constraint is time and energy and that they just don’t want to cook all the time. I get it. But I also understand the healing power of food. If something is making you sick and you want to get healthy, stop doing what is making you sick. It’s not fair to continue doing that when there are people around who love you and want you to be around a long, long time. It’s just not fair.

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