Mom Update 4/7/2017

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Today Mom had an MRI done to determine the cause of the speech aphasia and loss of motor skills. It was as I had suspected from early on.

Mom has had a minor stroke.

That explains all of the weird symptoms that she’s been exhibiting – the loss of communication, the loss of motor skills, the loss of connection to reality at times (today she told me that a fish on the ceiling helped her sleep last night and that there was a hat on the fence outside her 5th floor window, not to mention the black widow spider that was on my glasses at one point). At least now we have a direction to move in and to see what we can recover of what she’s lost.

I’m terrified for her at this point, because she’s unable to communicate even the most basic wishes when she’s tired or hurting, and she’s usually tired or hurting. I don’t know how her care is going to change at her nursing home, and I really don’t have an easy way of checking on her, unless it’s to check with Kenneth and get reports from him.

I’m more scared of what I’ve just inherited. As her financial power of attorney, it’s now fallen to me to make sure that her bills are taken care of and that things run smoothly for her with regard to her money. Fortunately I’m a signatory on her bank account, so that helps immensely. But her budget and all of her finances are locked away on her laptop at her facility, something that I’m likely going to have to get my hands on to be able to efficiently execute her finances. That will likely be something that Kenneth is going to have to retrieve for me and ship to Austin so we can get things done.

Right now, though, I have another priority that I need to look at – that being the trip to Arizona to be with my wife’s family over Easter weekend. With my knee in an immobilizer, this might be a long trip for us. I’m dreading the flight back to Austin, even though United was kind enough to not only put me on the right bulkhead aisle but to move my wife’s seat from somewhere else on the plane – our reservations were made at different times – to right beside me on the bulkhead.

I’m kind of numb given the news of Mom’s stroke, so bear with me if I seem out of it for the next little while. Life is too busy to be able to process this effectively and it’ll be over a week before I can really start to do that.

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Mom Update 4/6/2017

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Mom has shown signs of improvement today. They’ve put her in the recliner for most of the afternoon, she was clearer with her speech in the afternoon, they’ve switched her from a wide-gauge nasal cannula to a narrow-gauge, and to top it all off, they’ve moved her out of cardiovascular ICU into a regular room.

That having been said, she’s having a very rough night. She’s barely able to communicate at all, she’s apparently hallucinating still, and she’s absolutely panicked that she’s dying and that she’s going to do it alone. As I write this, she’s been inconsolably crying and coughing hard. We don’t know why she’s so upset, and she can’t tell us, which is just upsetting her more.

I feel utterly helpless to do anything. I hate this feeling.

Mom Update 4/5/2017

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Today was a busy day for Mom.

Physical therapy came in and had her sitting in a chair for a couple of hours. That kind of wore her out. She also had a CT scan done of her head to see if they can determine a reason for the speech and motor skills difficulties she’s been having. (She can, with great effort, lift her left arm high enough to scratch her nose, but that’s about the limit of what she’s been able to demonstrate.) After the CT scan they took advantage of the fact that I wasn’t in the room (more on that in a minute) and changed her linens and bathed her. She was pretty exhausted by the time I got back and was, as I understand, pretty upset with her nurse at the time, apparently for something involving the transfer process during bathing.

The reason I was out of the room was that my wife flew into town today, and I went down to pick her up and get us checked into the hotel on the premises and then back down to the cafeteria to eat before heading back up to see Mom. They were busy bathing her when we arrived but there was a waiting room in the CVICU where they’re keeping Mom and we sat there for a few minutes while they finished up.

Mom seems to be ever-so-slightly improving with her speech. There were several instances where I would get a sentence out and she’s come back with a smart-alecky comment and a face to match – so I know she’s still intact in there. (At one time she told me, very clearly, to “kiss her ass,” after which we both dissolved into giggles. I deserved it. I was sassing my mother.) She’s intensely frustrated that what she thinks she’s saying isn’t making it out as English, but we’re able to get a little further each day by asking leading questions. A couple of people recommended that we get an alphabet board and have her point to the letters that she wants to say. Our obstacle there is the loss of motor skills. She’s not been able to show that she can point, much less at anything specific.

The day was further complicated when I fell down a few steps and wrenched my knee during the day. It’s very sore to walk on, it’s causing me to limp, and my wife is thinking I might have pulled a tendon in it. I’m glad she got here when she did – I can’t imagine trying to take care of Mom on my own with a bum knee.

I’m taking care of myself the best I can – I’m trying to rest when Mom’s resting, I’m trying to minimize the time that I’m on my feet, I’m trying to elevate my leg whenever possible, and we’re trying (but failing) to ice it down for any appreciable length of time. Mom keeps asking me to come over to her when I’m in the recliner in her room icing my knee and the icing has to go by the wayside to take care of her. Not mad at her for it by any means, it’s just difficult to try and take care of myself when she’s wanting me close.

Oh, earlier I mentioned there’s a hotel on the premises. On the third floor of the hospital, there’s a small, 33-room hotel for family members of Heart Center and CVICU patients. It’s very nice, there’s a fitness center in the hotel area, there’s a continental breakfast every morning, and the rooms are spacious and comfortable. There’s a TV, a mini-fridge, a 4-cup coffee maker, a table and chairs, and two double beds in the room we’re in. It’s kind of like a Ronald McDonald House for heart patients. (In fact, we share a wall with a room that’s considered to be part of the on-premises Ronald McDonald House.) The beds seem comfy, and we haven’t decided if we’re going to try and cram ourselves into one of the beds together, or use both of them and spread out. We’ll make that decision when we get to it, I suppose.

The doctor is supposed to read the results of the CT scan and explain what they found tomorrow, so we’re heading back relatively early to make sure we don’t miss the doctor. As scared as I am to hear the results of that test, I hope that it reveals something that we can concretely begin to address so Mom can improve.

Mom Update 4/4/2017

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Today was a day of ups and downs with Mom.

They are slowly weaning her off the oxygen and are hoping that she can come off of it entirely sometime tomorrow. She’s fighting the nasal cannula hard though, and if she had better motor skills she’d have been able to pull it off more frequently than she already did. I must have had to wrap it back around her ears a half-dozen times and the nursing staff at least that many.

However, having said that about the oxygen, they also had her on her BIPAP machine the majority of the day. Thanks to that she missed lunch altogether after eating very little breakfast, and went on to refuse dinner. I’m concerned about her not eating.

Her speech therapist met with her this morning fairly early and from what I could gather while I was there (I needed to go eat breakfast to take medication) she was putting together more words at the beginning of a sentence than she had prior to that meeting, and was doing it more frequently. That dropped back off to mostly babbling chatter after the meeting, though, so I was a little discouraged that the improvement was not more permanent.

She’s getting very frustrated that I don’t understand what she’s trying to say. At one point it took us five minutes for me to suss out that she wanted some more tea and as I was walking out of the room to fetch it for her she yelled out very clearly “you’re such a dumbass!” That makes me think that she thinks she’s actually communicating and is getting frustrated when others don’t understand her, another sign that I think she might have had a minor stroke.

Another sign that I think she might have suffered a stroke is that toward the end of our visit today I asked her to write her name, in an attempt to see if we could cross the communication gap somehow. I got one clear letter out of several attempts, and the rest of it trailed off into unintelligible scribble. So no dice on the communication.

I’m very concerned that this is going to be permanent, and if so, how am I going to find out how she’s doing once she returns to her facility? I’m not the medical power of attorney so I can’t call and get information on her readily. It’s like I’ve already lost her in a way.

Fortunately my wife is flying out to be with Mom and me tomorrow morning, and we can hopefully figure out a plan during the rest of our trip.

I foresee a long, bumpy road ahead.

Mom Update 4/3/2017

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I’m in North Carolina with Mom. The flight was good, despite a good amount of turbulence on the second leg.

Mom is in really bad shape.

It took her a while to recognize me when I came in, but she eventually started showing very dim signs of her usual feisty self and would smile when she looked at me, so we’re taking that as a sign of recognition. Unfortunately that’s all we have to go on, since her ability to verbalize has been reduced to incoherent babbling with the very occasional lucid phrase mixed in.

They’re calling this a form of dementia but it’s unlike anything I’ve ever heard of. I was carrying on full half-hour conversations with her a week ago and now I can’t understand a thing she says. I asked her if she wanted a blanket a few minutes ago and I got a clear “yes” from her, but that’s been the extent of any real communication.

I gotta admit, I’m scared. My mom is slipping away before my eyes and I don’t know what to do.

Today’s Mom Update

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(This is a repeat of a Facebook post I made earlier today. If you’ve read that, you can skip this. I admit it, I’m being lazy with today’s blog post. I have reason to be.)

I got a call from Kenneth, Mom’s medical power of attorney and the family friend that’s watching over her while I’m here in Texas and she’s in North Carolina.

The doctors at the hospital are asking if Mom has a DNR order in place.

They’ve taken her off the ventilator and they’re monitoring her closely, but the doctor is saying that there’s a good chance that she’ll have to go back on the ventilator, and if she does, she’s likely never coming off of it again. They’re also saying that if she goes back on, it’s likely that they’ll have to do a tracheotomy to do so.

We’re in the process of pricing flights to get me out to North Carolina this week, but at this point I don’t have anywhere to stay nor any way of getting around. We’re trying to get that figured out best we can. First order of business is getting me out there in the first place.

I’ve gone from cautiously optimistic to scared to death.

The Courage to Be Vulnerable

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Today’s blog post is going to be considerably more personal than usual, even in a blog that deals with my experiences with chronic physical and mental illnesses. Today I’m going to talk about a part of my past that I don’t like to bring up.

First, though, let me preface where this is coming from. I am in the last few pages of Daring Greatly by Brené Brown, PhD, LMSW and today’s section is called “The Courage to Be Vulnerable.” It’s the last section in a chapter entitled “Wholehearted Parenting: Daring to Be the Adults We Want Our Children to Be.” The second paragraph in the section is as follows:

As I travel across the country there seems to be growing concern on the part of parents and teachers that children are not learning how to handle adversity and disappointment because we’re always rescuing and protecting them. What’s interesting is that more often than not, I hear this concern from the same parents who are chronically intervening, rescuing, and protecting. It’s not that our children can’t stand the vulnerability of handling their own situations, it’s that we can’t stand the uncertainty, risk, and emotional exposure, even when we know it’s the right thing to do.

This struck me not as a parent, but as a former child that experienced this behavior from my own parent.

Before I continue, I want to be very clear: I love my mother to death. I enjoy her company, I want the best for her, I worry when I can’t be there for her. (She’s in a nursing facility half the country away and neither of us have the financial ability to move closer to one another.) I know she did the best that she could with me, and I don’t hold any grudge against her for the way she handled my upbringing – but my mother was very much one of those parents that rescued and protected her son.

It wasn’t always that way. She did a great job of letting me experience life on my own terms and I did a great job of handling that – up until I was 13. That was the year I was repeatedly raped over a period of several months by a guy on my paper route, and Mom went from being relatively hands-off to a helicopter parent. I understand why Mom’s parenting style changed – there was a situation that occurred that she wasn’t there to protect me and a Bad Thing happened because of it, and she was determined that something like that would never happen to me again. I get that. But it severely affected my development as an adult.

Anytime I was faced with adversity or potential disappointment, my mother was there to bail me out of the situation I’d gotten myself in. That behavior continued well into my thirties, and didn’t actually stop altogether until my early forties. When I started living on my own, and started changing the questions from “Mom, I’m in trouble, can you help?” to “Mom, I’ve gotten into a situation and need some advice trying to get myself out of it,” her response was to immediately bail me out. This was usually a financial bailout of some kind. I tried several times to refuse her help, but she worked quickly to make my learning opportunities disappear before they were ever much of a situation at all, and I eventually learned that was what Mom was going to do, and that I wouldn’t learn things like how to make a budget and stick to it from her. I’ve finally gotten to the point that I consider myself grown up, but that’s only after several years of having no actual assistance and very little advice from Mom and needing to come up with the answers on my own.

I try to live my life without regrets, because I never know what decision that I would choose to alter in the past that would radically change my life today, and I like my life too much to want to take a chance on changing that, but there are times that I wish I’d learned how to be an adult earlier than what I did. I feel like I needed to learn that adversity and disappointment that Dr. Brown talks about in her passage above earlier than what I did. I can’t go back and change any of that, unfortunately, but I can move forward knowing that I finally learned what I needed to do to be a functioning adult.

It’s interesting to note that I don’t mention my father much in this. The reason for that is that Dad was very often a hands-off kind of parent and basically left me alone to try and fend for myself. I imagine there being quite the arguments between their parenting styles in my teens, with Dad always giving in to Mom in the interest of matrimonial harmony. The other reason that I don’t mention my father in this post is that he passed away when I was 26, and his ability to alter Mom’s behavior ended in 1995. Keep in mind that Mom was still bending over backward trying to preemptively bail me out of situations through late 2009, so that’s 14 years of Mom receiving no opposition to her parenting style of throwing money at the situation, one that was exacerbated for years by the windfall that was my dad’s life insurance policy.

I’m embarrassed to admit that I didn’t fight Mom more than I did, but I really didn’t have the self-confidence to be able to figure out my own way out of a situation, and I certainly didn’t have the know-how. At this point, it’s a thing that just was, and I’m glad that period of my life has come to an end.

So what does that mean moving forward? It means that I’ve finally figured out how to handle adverse financial situations, but it also means that my wife and I are barely scraping by. That will hopefully change in a year or so when I start looking to return to work in my new field of study – having two full incomes coming in will be a huge help to us becoming more social and more active in our hobbies, as well as provide the opportunity to travel more often to visit Mom and perhaps even save up to bring her out to be near us. We’ll just have to see.

It took me far longer than I wanted it to, but I finally learned that adversity and disappointment that comes with being vulnerable. I wish it had happened sooner, but I’m glad it finally happened at all. I’m a stronger person for it.