Back from my folk’s house

Well, got back from seeing my folks yesterday. It was an interesting visit. I have to say, based on everything they have been through in the last 6 months or so, they are soldiering on.

Mom’s condition has definitely gotten worse. She coughs now like she really will “bring up a lung”, which in this case is not so far from the truth. Most of the active malignancies are located in the lungs, and she is really hacking badly and having trouble with her breathing. While she is not yet on full-time oxygen support like Dad, she does use oxygen during various periods during the day when she gets fatigued.

Short summary of what she and I did during my 48 hour visit:

· Arrived before noon day 1. She had already completed a nap – shortened by my phone call letting her know that I was close. A bit of laundry was completed by the time I arrived, and we did the rest in the next few hours, along with sharing a bit of lunch. After another short (~ 1 hour) nap, we headed off to Wal-Mart and restocked their shelves and freezer for at least a few weeks. We also replaced a defective electronic picture frame on which a bunch of family photos are loaded which we gave her at Christmas. After a dinner of pizza, she had another nap until about 10, after which she showered and prepped for bed.

· Day 2 – gambling. For Mom, the highlight of any day will be the opportunity to go out and do “finger exercises”. I drove us 2 ¼ hours each way to a Native American casino she likes, including stops for lunch and dinner. We both spent too much money gambling, but enjoyed the day. In fact, she counted down the last 20 miles or so like an 8-year-old going to the circus or amusement park. It was really funny to watch. Her only real nap that day was coming home in the car for maybe an hour, but I’m sure that she has done some “catch-up” napping since I have left.

· Day 3 – finished a few more odds and ends, had breakfast, and I left to get home to take care of commitments here.

During most of this visit, Dad slept or at least convalesced. He had surgery to install a permanent port with which kidney dialysis can be administered if needed at some point in the future. Yes – on top of the Alzheimer’s - he has type II diabetes which has advanced to the point where dialysis may become necessary.

On day 3 of my visit, we noticed that he was getting puffy in his surgical hand, so Mom checked in with the doctor after I left. The dressing needed changing, so she did it. He’s doing better, but needs time to recuperate.

All-in-all, I’m not sure how to assess Dad’s situation. He is aware enough of what’s going on, and we all had some conversations about what the future may hold. He’s engaged in those conversations, but not entirely willing (IMHO) to accept things. He says he’s willing to move out here by us, but I’m not so sure deep down. I think, if given an alternative, he might have to rethink things.

Frankly, I worry that he is getting depressed knowing that he will likely outlive Mom. They have been in some kind of morbid race to kick-off first, I think, because neither wants to (or probably more rightly, cannot see HOW they will) continue without the other. On top of that issue, he watched his mom deal with the same thing (which I remember through the lens of a 5-year-old) and I think the horror of losing touch with the reality that most of us share is a scary, scary thing.

This all being said, the visit was a very good one – all things being considered. Being 400+ miles away sucks – period. It’s not just a quick drive across town to see them and to try to do what I can. I did my level best to make the best time possible, and could do it in just about 7 hours total, including two stops – one for fuel and a bathroom break, and another solely for a “nature call”. Doing this when possible, helping out with chores, reviewing the results of work done here to prep for Dad’s eventual move, etc., will have to suffice, I suppose. I just wish it could be more somehow.

So I sit here in my living room across from the one person in my life I want this to least affect – my wife of these many years – knowing that we all will be affected and there is nothing I can do about it. In reflecting on things during the last few weeks, however, I was struck with a realization that is probably a “No kidding!” moment, but so be it.

While I have been fretting over my parents and what I can do to support them, she has been there behind me, fretting over me and what she can do to support me. Families – whether by blood or by a committed relationship such as ours – hang together in ways that are truly remarkable. I have come to realize, in a whole new way, that having that kind of support is the most remarkable sort of blessing possible. Without her support, and unconditional love, I don’t think I could be as strong as I am right now for my parents’ sake.

I know that I can take the time and do what I need to do, and I will never have to worry whether she is resentful or hurt. She may not like the added drain on my time, but that’s OK. It makes the time we find to spend together all the more special.

Frankly, though, I have had some trouble feeling God’s presence during this period. Mom and I have talked and, while she and Dad are not “churched”, she has recently told me she has a relationship with God and prays regularly. She is at peace with how things have developed, having never dared to believe that she would live this long given our family history. And, I believe, she is accepting that it is her time to go to her rest.

I am not, in a very selfish way, ready for that eventuality. However, knowing that Mom has achieved some measure of acceptance of that and satisfaction with what life has provided, then I need to “get over myself”. Particularly if she has accepted God into her life and is ready to go. Acceptance will eventually come for me and my brother and my Dad, I know.

It’s just difficult to reconcile the suffering and pain that must precede the “big chill” in some cases like this. As I said before, it just sucks…

Hello - again.

It’s been a long time since I posted here. I’ve had reason to, but just haven’t. However, now things really feel like, for me at least, something a lot like the title of this blog (didya know that the work “blog” is being flagged by my spell-checker? How old IS this ‘puter, anyway?). I won’t go through the litany of issues in this post, but I expect that some of them will be addressed in future posts.

No, the reason for this post is that I have had a lot of “windshield time” this week (euphemism for “I’m traveling a lot by car for my job” and otherwise). Windshield time for me means one of two things – listening to some sort of audio CD book or thinking about things, in general. I’ve had reason to do both this week, at some length.

Among other things, I am worried about/preparing for the death of my Mom and trying to figure out how to best help my Dad with his advancing Alzheimer’s/dementia.

First Mom - a few months back, she was having some problems with her digestive system. During the course of diagnosing what was going on, a number of active malignancies were found. The nature of what was found, and the numbers of sites, led to the diagnosis of stage IV cancer. No operations, no other possible treatments than perhaps chemotherapy which would do little more than extend her life from 6 months to 2 years.

The chemo hasn’t helped. In fact, at least one more active site developed in the six weeks of treatment, with lots of other “seed” sites being diagnosed as well. Based on this, 3-4 months’ life expectancy has been predicted. She’s feeling somewhat better now that she’s off chemo (in terms of side effects), but she was hospitalized with complications of congestive heart failure over the weekend for a day to reduce swelling and other side effects. She’s out and sassier than ever, at present.

Given that outlook, we are trying to figure out what is in Dad’s best interests. He is advanced enough that short-term memory is intermittent, and trying to go more than a day or two without Mom’s help or some other sort of assistance is a concern. He can keep track of taking his meds – provided they are prepared as Mom does and reminded to take them at times. Living alone is looking unlikely, although another option exists which we need to explore.

The rub here is that my brother and I live 400 (or more) miles away, and in different directions and different states. Due to other considerations, moving Dad to my neck of the woods (if keeping him at home is not possible) is becoming choice #1. Dad’s first choice is to go into a VA center with suitable treatment options, as this would likely put him in contact with guys who served during his era of Army service, and therefore they would be able to share “war stories” from a time in his life he still remembers well. The federal VA does not offer this option – just state hospitals. Since there is typically a residency requirement of at least a year, bringing him to my current state of residence and placing him in a VA facility is not possible – at least in the short term.

I am debating moving him to a local facility that is really pretty good, getting him placed and establish residency, and looking to move him to a VA hospital after a year has elapsed. IDK – this issue needs lots of thought.

Back to Mom’s situation and, in reality, what it’s doing to me (because everything does, IN FACT, revolve around ME – said with tongue firmly planted in cheek). I will be traveling to my folk’s house tomorrow, and will attempt to help out in any way possible. We will at least do a bunch of shopping (grocery primary among them), perhaps do a little cleaning and laundry, and very likely spend one day gambling with Mom. (Her one vice is to go and spend time plunking money into the old one-armed bandits for the day – something which she gets a lot of enjoyment out of and for which, at this point, I cannot deny her).

So that, in severely shortened Reader’s Digest version, gives some insight into that “thinking about things” aspect of my windshield time. However, I have been listening to an audiobook on CD. My first intention was that it would a distraction and might help the time go more quickly. However, the book I am “reading” has struck a chord with the “thinking” time.

As background - I have been a fan of Stephen King for some time so, when my wife suggested I listen to his latest – “Duma Key” – I thought, “Sure, why not. He’s good for that kind of listening. The Gunslinger series helped me make it through many long hours on the road”.

At this point, I am a little more than halfway through the book. For those familiar with the story, he is in the midst of his opening night exhibition/coming out as an “artiste”. Of the many thematic threads running through the novel, the one I started to dwell on and loosely apply to my own situation is that one that suggests that you need to find some other way to express yourself than you ordinarily do; that this expression will be at once cathartic and redemptive. For Edgar, that expression through painting has led to some measure of redemption - the opening night of his work, and the accolades he is currently receiving.

For me, I am just trying out my own expressive “art” – writing, rather than sketching or painting. Putting down these words about my own life situation at present, as they flow from my mind, is very helpful and is already lifting the load a little here tonight in another in a successive stream of cookie-cutter hotel rooms – alone and feeling a little sorry for myself.

[Having just stopped to reread the past couple of paragraphs, I started to feel like this whole line of thinking was a little too trite; a little too contrived-sounding. But you know what? It’s the way I feel. So rather than delete it and try to find another way to go, I’m leaving it. Like I said in, I believe, my very first post, this writing is about me and I really don’t care if anyone else reads it or if anyone else cares. It’s how I feel, and putting it into words makes ME feel better. Deal].

My goal over the next couple of days (and realistically in the little time left of my Mom’s life), is to do what I can - from many miles away and with lots of distractions trying to divert my attention – for my Mom in her dying days.

I only pray for two things during this period – that I can help in some small way to help her live more comfortably, and that the pain of her condition hold off as long as possible. In some ways, I hope she goes - before the cancer takes her - from something else. Quietly, and in her sleep. She doesn’t deserve any more physical pain, and I believe she is prepared to move on. As much as I don’t want her to, I cannot stop it. Any more than I can stop the pain.

Wishing for her to keep on living, with this situation, is very selfish. I must let her go when she’s ready and when it’s her time.

For in death, there is life.