Bad luck into good luck.

Dad is through the colonoscopy and endoscopy. His legs are weak, according to Sis, but he seemed well when I saw him this evening.

Poor Sister! The toilets at that end of Assisted Living were clogged yesterday for the colonoscopy prep. Prep generates a lot of, uh, crap. So she had a literally crappy day with Dad yesterday.

The doctor said the prep was very good. I think she deserves a big-time gold star for that. I cannot imagine Dad either agreeable or compliant with the medical regulations.

But both colonoscopy and endoscopy came up negative. No real sign of polyps or of bleeding. That means the Waldenström’s Macroglobulinemia is causing his anemia. I guess the cancerous white cells proliferate crowding out the cells in the bone marrow that produce the red cells.

Next week Dad will start treatment for WM, get a transfusion, and they’ll xray his small intestine looking one last time for sources of bleeding.

I am lucky that my Sister is planning on staying to get all that underway.

We both are Great Aunts (again). Welcome nephew Morrison to the family, born this evening. Am I really old enough to be a great-aunt? (And not even for the first time?) Comes with the territory, I suppose, when you have siblings 15 – 20 years older than you are, and you are way behind the curve on the whole getting married and having a family thing.

I did my best to take advantage of my work day today, and I got a fair amount done. I still don’t feel great about what I’ve gotten done, but I don’t feel the rotten that we feel when we have a lot to do but still don’t get anything done.

The hematologist said today that he thinks Dad has Waldenström macroglobulinemia (WM), which is a non-Hodgkins lymphoma. Heck, I’ll let you read about it. I don’t know much just yet. Here’s another article about it.

I’m not sure what this means, beyond chemotherapy type treatments and a bunch of visits to the doctors office. If I understood correctly, it would be weekly, then every 3 weeks, then every 3 months.

Dad’s still going through the colonoscopy/endoscopy tomorrow. They think there may be a bleed (otherwise minor) but with this condition, it takes his blood levels down to a critical level. Hopefully that can be remedied?

He will continue to get regular blood transfusions, if I understand correctly. And some kind of infusion/chemotherapy. And we’ll see what else.

My sister is with him and will take him to the procedure tomorrow. Is it coldhearted that I am at least going to try to work? I don’t think I can help much in addition to what she is doing. I have to get some of my work done, and it’s looking grim for my time and energy level a while ahead.

I am grateful she is here to do this.

We are through day one of medical week. Dad had 3 doctor’s appointments scheduled today; I slipped up and didn’t realize he had both a hematologist appointment and the urologist at 10:30 am today. We saw his regular doctor at 9, and I rescheduled the hematology appointment to tomorrow. Thursday is colonoscopy and endoscopy day. Tomorrow, in addition to the hematology appointment, he will have to get prepped for the procedures. My sister is taking over that; I am grateful.

At his regular physician’s office they measured blood oxygen when Dad was walking around. It didn’t drop very low, although his heart rate got very high. He didn’t like all the walking, and he wasn’t walking well today. No changes there; we scheduled a return in 3 months, but I bet it will be sooner.

We’ve been waiting weeks for the urology appointment. We got there a little bit before 10:30. We sat. And sat. And sat. Waiting for the doctor, actually, the physician’s assistant, waiting for Dad to try to produce a urine sample (my readers know that this has been a repeated problem), waiting. I was getting impatient.

They measured the urine being held in Dad’s bladder and it wasn’t much. So now they are thinking his bladder might be spasming causing him to complain of needing to go often and that he thinks he has a UTI. Coincidentally, he was complaining about that this morning. He will take a new medicine for this. Most medications in that category have cognitive side effects (and not good ones), but the one we are putting him on supposedly doesn’t. Oy veh.

I kind of hate the huge number of medications, with potential side effects and cross-interactions that he is on, but what other choice is there? Just keep an eye on it, and complain quickly if he’s not doing well.

Since we didn’t get a urine sample from Dad, Home Health is going to take that in the next few days. I have to bring him back to the urologist, or rather, the PA, on September 28. I am sure that visit will be an ordeal again. That office seemed completely overscheduled and disorganized. I am not looking forward to that.

I need to settle down and do the work I need to do. Is it unsurprising that I am finding this difficult? Tired, distracted. Glad that Sis is here, worried that I should do more. Worried about how many appointments for the semester, how I am going to manage. Worried about doing a good job teaching my classes. I really need to let go of some of the worry.

I’ll try the gratitude antidote: I am grateful that Sis is here to take care of Dad so much this week, and for all that she is doing. I am glad that I started off class well on Monday. I hope I do a good job teaching this semester. I enjoy teaching, and it is good to have a job you enjoy doing. I am loved by my boyfriend, far away in Germany. I had some time for some rest today; perhaps I needed it. Everything is getting taken care of.

This tree is still alive, despite many struggles.

I’m back at home. One of my sisters is visiting. Dad has a colonoscopy and endoscopy next week.

Good thing the Sis is visiting — I noted all the things we had to do the day before the procedures, but not that Dad’s iron and aspirin medications needed to be stopped 5 days beforehand. I hope 4 days ahead is good enough, because that’s what is going to happen.

I start teaching again tomorrow. It is an easier class, but I am nervous as heck. I really want a more student-centered, active learning environment for my classes. It is hard to do that when you are teaching a subject for the first time and teaching big (70-90 student) classes. The distance between what I want and what I can currently do can be frustrating.

I’m worried about the research part of my job too. I need to find some traction there, and I’m worried I won’t be able to do it.

Worried, worried, worried. I don’t even like myself worried.

So let’s focus on some positives. My sister is here and is helping out this week — and this week was going to be a bitch. I have some ideas for including the students in my lectures. I got some encouragement from colleagues/friends (that I haven’t met in person) at other institutions and a few good ideas from them as well. I had a good bike ride on Saturday. It wasn’t fast, but I felt pretty good. I didn’t go as far as I could, but I did more than 40 miles, which is surely enough. I got up and ran a little bit this morning. A bit less than 3 miles, maybe 60-40 running and walking. Which wasn’t bad at all. I’ve worked on my lessons for tomorrow, homework for the first few weeks, I have website up, administrative documentation filed. So all that is good.

I got a nice note from a student today thanking me for setting up resources for them and for letting them know about them. I emailed students a welcome message on Friday, and asked them to look over the course website. It is always nice to hear that someone appreciates what you do.

One day at a time. One step at a time. Focus on doing what I can, not on what I don’t get done. Find some time for me, for relaxation, happiness, fun, satisfaction.

Thank you, all of you, for reading. And thank you, those of you who give me support and encouragement. It is much appreciated. This is a difficult journey; I am grateful for and need the help.

Bikes as transportation or yard decoration!

Daisies

Fischteiche

It’s good to get away, but being in Germany hasn’t been as restful as
I need or want. I’m having a hard time letting go of all the
worries I have back home. I thought we’d find more time to work. We
have some. I’ve mostly worried over a talk I give this week.

Dad’s stuff has invaded even here. The Assisted Living Facility has
not been a huge success in assisting with transportation. Their van
is broken. It’s been broken for 3 weeks, if I count correctly. Dad
needed to get to a blood transfusion on Friday. I arranged for a cab
to take him and return him. I didn’t want to ask friends to do that.

Work worries me too. At the current rate of medical appointments, I
have a very hard time getting bare necessities done. Some things are
easier over the regular semester. The main day-to-day lectures I will
need to give will be a lot easier. But I need to get the research
flowing. It’s been stalled for a long time now. Balancing the
teaching, the research, and a large load of community work wasn’t
going well for me. Throw Dad on top of that. I’m fearful.

The teaching is fun when it is going well. The research I’ve never
felt successful at. Until I establish some success with it, it will
be stressful. A good, encouraging team or community around me would
help. I do good with my community work, just by showing up. I have
good friends and a community that support that work. Showing up is
hard sometimes, when there’s so much to do.

Dad. He has so many problems that it is impossible to be on top of
them all. Medical and financial issues both are substantial and eat a
lot of time, and I have handled both, plus a backlog of unaddressed
problems, like the dental work, the taxes, the overdue bills. He’s
settling in at the Assisted Living Facility. He’s fed, given his
medicine, checked upon several times a day, and cleaned up after (not
an insignificant issue, that). That is better than alone in the
putrid trailer with the dog (though I wish, in many ways, that he
could have the companionship of the dog), and no family around to help
with his medical/financial/cleanliness issues. What is not good is
that he is not a part of a real community here. There aren’t a lot of
people to check on him, to include him, doing things he wants to
participate in. At this stage of the Alzheimer’s he’s not reaching
out to the other people where he lives. I know how to make a
community or to find one for myself, but I do not really know what to
do for him. If I can. It is really something you do for yourself.
Maybe he can’t either with the Alzheimer’s disease. That is sad, and
leaves him adrift and alone.

I know my efforts must be doing some good, but on the other hand, I
am constantly confronted with new problems from him that have to be
managed. It is hard to feel anything other than inadequate and
unsuccessful. We all fight a losing battle with death eventually.
This is a long, slow, slide. One of the aging care newsletters I read
talked about early grief earlier this week. I am surely suffering
from that. We who take care of our aging parents see that
decline, up front and personal, all the unhappiness, all the
indignities. We grieve for our parents, and also for ourselves, both
in the present and in the future, fearing our own fate.

How do you find some time and peace for yourself in am mess like this?
I know I need to, but … how? I am content with making these
posts, as a partial palliative, at least. And anxiety medication.
Thank goodness for anxiety medication. I wouldn’t be functioning
without it.

All I seem to be able to say today is that it is all a heavy heavy burden
of late. I am not sure how to manage it, or even the rest of my “real
life” without it. I know I need to work on things and move forward
and find new and different solutions. I keep thinking I should have a
more positive attitude, to be more grateful for the good things in my
life (and there are many, not the least of which are Stirius and being
in Germany). I will have to keep trying on all accounts. Somehow!

I’m headed back to Germany. Dad is squared away for the moment. It’s been an eventful week. It’s only Wednesday!

Monday he called me to complain he had a UTI. Dad, I wanted to argue, you keep saying that, and it hasn’t been true yet!

It’s too much of a risk to ignore his medical issues; he’s proven time and again that if he’s complaining that something is wrong. I made an appointment to get him in to see the doctor that afternoon.

I complained about the repeated trips. He had a problem producing the sample again. He had to suffer through a prostate exam!

He does not have a UTI. This time the PA figured out that when he urinates, he doesn’t empty his bladder completely. Prostate issues. They give him a medication to help with this; a long acting one because the short acting ones might lower his already low blood pressure. I have something to tell him if he complains about a UTI in the next few weeks. Hopefully the situation will resolve after that. The medication costs another $130+ per month. Sigh.

We get to go visit the urologist when I get back.

We visited the gastroenterologist on Tuesday, and a colonoscopy and endoscopy are on the schedule, along with the urology appointment and one to Dad’s regular doctor, all during the first week of fall semester classes. I hope it eases off after that.

The colonoscopy prep — very nontrivial, and I cannot imagine Dad willingly or easily complying. I filled out paperwork so I can hire someone from a senior care agency to sit with him for 12 hours to try to insure it happens and insure that he has help if he needs help getting to the bathroom.

I need to get some rest in Germany. I have work to do over there, and I give a talk. I want to have some fun adventures with my Stirius too!

A friend is hired to take Dad to at least one and maybe two appointments while I am away. I left him complete instructions and payment for the first appointment while I am gone. Or so I hope!

I got a call from the assisted living facility at 9:30 am that they couldn’t get Dad to his 10 am Dentists’ appointment after all. I was up on campus, on my bike, and I teach at 10 am.

They said that it wasn’t on or got removed from the calendar. I called to confirm those at the beginning of the week! After the debacle a few days ago, I left a written note last night reminding them of what should have been on Dad’s schedule for today. If they had called at 8 am that would have been one thing. But calling at 9:30 … my hands were tied.

I ended up rescheduling the dentist’s appointment … I couldn’t get a cab to get him in that length of time. I was mad that they only gave me 30 minutes notice. There’s not much I can do in that length of time.

What do I do now? A letter? A phone call? A meeting? Probably a letter and a meeting. I don’t even know how to plan ahead these days. What do I need to do?

Dad had a doctor’s appointment @3:30. The assisted living facility was to drop him off. I got there around 3 so that he wouldn’t have to wait for me alone. I debated calling. I’d been working on things earlier in the day, and it had fallen off my radar before hand. Surely it is paranoia to always have to remind people. I’d called yesterday to confirm we were on the calendar.

3:30 pm. No Dad. I call. I get voicemail. So I call Dad’s number. He’s still there. Shit. Now what do I do? I went to talk to the front desk. Turns out if I could get him up there before 4:30 we could be seen today. Got assisted living on the phone. Turns out they got him up there. And they were able to pick him up to take him home — I was worried about that, since I was there on my bike. I had a $100 bill and $15 in smaller bills on me, and I wasn’t sure that the smaller bills (not everyone will break a $100) would cover a cab fare. I had called some friends for help in the meantime!

I’ve been struggling these last weeks trying to get everything done with work. To get everything done with him. To keep track of a myriad of appointments that never seem set in stone. I try to take him as much as I can, but I just can’t when work is eating up 12 hours a day most days.

That was a little too much stress on top of the rest. I came home and took anxiety medication. I am calmer now, not feeling like the world is about to end and that I need to find cover.

It’s been a very rough summer term. My teaching hasn’t been what I want it to be. Sometimes it’s been poor. I’m not proud of that or happy with it nor was I able to do more. 12 hours or sometimes more a day was all I could give. I’m about done. The fall had better be easier. It’s got to be. And I hope that Dad’s medical stuff gets solved or eases up in some way. I can’t keep going at this pace.

Dad did, indeed, seem more lively after being transfused with something like 4 units of blood last week. His walking is still weak. He was talking about being bored and reading a new book and wanting a dog. I might take him out with me somewhere either this evening or tomorrow.

I’m glad he’s feeling better. It is hard to see when he is so sick. It is unbelievably hard, and there is so little I can do about it.

We still have a lot of doctor’s appointments on our schedule.

I come to the last week of the summer session next week. I’ve been really struggling with my teaching. This is an advanced course, and while I think I’d do okay teaching it for the first time over the normal semester, needing to talk about it for an hour and a half a day 5 days a week has been very very difficult. I’ve poured a lot of time in to preparation; I’ve still been feeling like I’m drowning. I give two more lectures next week, a review, an exam, a wrap-up and then we are done.

My anxiety has gotten pretty bad with all the pressure and stress. I am hoping that eases off.

I liked the hematologist today. He seemed pretty on the job with regards to doing something about Dad’s anemia. If Dad’s not losing red blood cells any other way, he must be bleeding somewhere. Dad’s probably got a fun endoscopy/colonoscopy upcoming.

He gets a transfusion tomorrow. How bad is it? The doctor said it might take 4 pints of blood to get his readings back to normal. He’ll get two tomorrow, and maybe two more the next day. And they run tests to see whether they can figure out where those red blood cells are going.

They are going to have him in the medical office from 11:30 am until late afternoon. I can’t bring him in; I have to teach. The assisted living facility will just be able to get him there in the morning, though they may have to drop him off a bit early. With the late notice, no one can stay with him. Someone will get him checked in and to the correct waiting area at the doctor’s office. I think he will be okay. He’s been fairly cogent lately; he just feels like crap.

I will call the nurse (at the doctor’s office) in the morning and let her know how we are getting Dad there, that he’ll be there unaccompanied, that I’ll be there as soon as I get out of class and have some lunch, and to please check on him. I’ll make sure they have my cell phone number.

I’m worried about Dad, but very grateful this is getting addressed. I’m worried for me; how I’m going to juggle a bunch of medical appointments and get done with the remaining two weeks of my 5-week intensive summer class, I do not know. I was pretty maxed out before we added in more medical fun.