Gary BUTTERWORTH Online

Stratford, NJ, USA

Last Wednesday, August 20, marked 1 year and 9 months since I began taking care of my grandmom.  But, due to the trifecta of laziness, the Olympics, and another hospitalization, I’m late in posting my monthly recap.  And, unfortunately, the fact that this is the most negative post I’ve written in a while means that I haven’t been in much of a hurry to write it.

Recent Background

As I’ve mentioned a few times, my grandmom hasn’t been eating much for the past month or two.  At first, this wasn’t such a big deal; she had gone through periods of not being hungry before, only to come out of them naturally a few weeks later.  But this time, she just wasn’t coming out of it.  She simply had no appetite.  We talked to her doctor about this, and he told us that this situation wasn’t all that unusual in people of her age.  He recommended giving her nutrient shakes, but not forcing her to eat if she didn’t want it.  After all, if she wasn’t hungry, what is really to be gained by forcing food on her?

So, we fed her what she wanted: a scoop of ice cream here, a bit of pudding there.  By the second bite, she was usually full.  And content.  And there really wasn’t much of a downside.

But she was getting weaker.  Every week, she had more difficulty walking.  My mom would put her in the wheelchair to get her from one room to the next.  I’d help her take four or five steps before I had to carry her.

And, she started to fall.  She had three falls.  I think I blogged about them before, but honestly, I don’t remember.  The days and weeks and months kind of run together, as does to whom I tell what.  I don’t remember what I tell people about and what I blog about.

Anyway, she had three falls, which I think I blogged about.  Each time, I was within four feet of her, and two of the three involved her falling out of somewhere she was seated.  It’s amazing what can happen when you look away for literally two seconds.

Also, at the very beginning of August, I noticed that she was starting to gag sometimes when she took a drink, and sometimes she would even cough up some fluid.

Fall out of bed

My grandmom never has good days, but some are better than others.

Friday, August 8, was a bad day.  Not her worst, but definitely not good.
All day long, she was talking to herself.  She was full of energy, which I suppose is good, but she just wasn’t making any sense.  Around 1:30 AM, I finally convinced her to go to bed.  Even there, she was still rambling on and on to herself, and I had to tune her out to go to sleep.

At 5 AM, she was asking to go to the bathroom, and I took her.  I put her back in bed, where she was still talking non-stop.  And again, I tune her out and went back to sleep myself.

I woke up a few times, and she was still chatting away, so I just fell right back asleep.  (This was nothing new.)

When I finally woke up at 11am, she was still chattering away, but she was on the floor. 

In her defense, she was asking for help.  But in my defense, “help,” is one of those words that just comes out of her mouth.  At least a dozen times per day, she will ask for help.  When you ask her what she needs help with, she’ll say, “nothing.”

Fortunately, Nana wasn’t complaining of any pain at all.  But she did have a few small cuts and plenty of bruises, and I decided it was best to call the ambulance, since I didn’t want to risk moving her if anything was broken.

ER visit

The Emergency Room Doctor ran some tests and told me that those indicated that she had been on the floor for several hours.

My grandmom in the hospital. She looks better now.

She could tell that I felt horrible about that, and I managed to hold it together long enough for her to tell me not to beat myself up over it; that she could tell that my grandmom was well cared for (particularly, she said, my grandmom’s skin indicated that she was receiving good care).  I know she was right; I know that my mom and I do a good job with my grandmom, and that she gets all the care that she needs.  And I know that I can’t possibly stay awake all day and all night looking in on her.  And I know that falling out of bed like that was almost inevitible, and that it’s no one’s fault.  It could have just as easily happened in a hospital or elsewhere.

Still, when the Doctor left, I had to excuse myself to the restroom for a few minutes of privacy.  Believe it or not, this may have been the first time that I needed that.  Even though I know it’s not really my fault, it’s still very upsetting to know that my grandmom was laying on the floor for hours, just a few yards away from me, while I was sleeping.

Fortunately, she didn’t break anything.  But the hospital kept her for ten days for observation.  Turns out, they found a few more things unrelated to the fall.

Feeding tube?  Brain surgery?  Hospice?

The doctors noticed a subdural hematoma in my grandmom’s head.
(DISCLAIMER: I am almost completely ignorant to biological/medical stuff, so I’m mostly just parroting what people have told me.  I’m sure I’ve messed at least some of this up somewhere along the line.)
Basically, it’s a little bleeding between the brain and the skull.  The doctor told me that it could have happened from the fall out of bed, it could have happened as much as 3 years ago, or it could have been going on chronically for who knows how long.  But her best guess was that it was a few weeks old–a result of one of her other recent falls.

The doctors said that, if we wanted to, we could go ahead and schedule my grandmom for brain surgery to figure out what exactly was going on.  But the doctors didn’t think the bleeding was very severe or having much of an effect on her (they said it was quite possible that the bleeding was completely harmless, with the possible exception of the fact that a history of bleeding in the brain meant that she had to be taken off some of her heart medicine, which had been doing a very good job), so no one flinched when we turned that down.

The second decision was a little more gut-wrenching.

While in the hospital, they also did a swallow study to find out why she wasn’t eating and why she was coughing up fluid.  Turns out, she is beginning to aspirate.  Basically, food and fluids are starting to go down the wrong pipe when she tries to swallow.  This is actually pretty common with advanced-stage Alzheimer’s patients.  In fact, many Alzheimer’s patients ultimately die from choking or from pneumonia brought on by food getting into the lungs.

I did a little reading about this online, and I repeatedly saw talk about just how common this is in end-stage patients.  Website after website gave a 6-month survival rate to patients experiencing her symptoms.
I know that she isn’t doing well, but to actually see her classified as “end stage,” and to see an actual prognosis of a few months was still difficult.  For the second time in two weeks, and only the second time in two years, I had to fight back tears when I read that.
And then, of course, I can’t help but get all pensive and self-critical when I realize that I can’t decide if such a prognosis is good or bad.

Anyway, at this point, the question everyone faces is whether or not to go ahead and insert a feeding tube.

Apparently, from what I’ve read, until recently giving the feeding tube was standard practice.  But over the past 5-10 years, this practice has come into question.  Many people still elect to go that route, but those who decide to forego the feeding tube have been backed up by articles in in JAMA that suggest that feeding tubes ultimately do very little for the patient in the short or long runs.

(I’m not going to go into the debate here, because common sense can explain most of it, and Google will turn up plenty of facts and emotions regarding the debate that you may not have thought of.)

It wasn’t without a lot of heartache that our family elected to pass on the feeding tube.  But we weren’t second-guessed by any of the doctors for our decision.  We’ve put her on a diet of thickened liquids and puréed foods, which make swallowing easier.  So far, this seems to be helping.

We can always go back and have one inserted later.

Rehab, bed sores, and outlook

After ten days in the hospital, my grandmom was transferred to the same in-patient rehabilitation facility she was at last time.  She’ll be there for a while (probably a month or so) for physical therapy and observation.  They’re hoping to be able to get her to walk again, but given her general weakness, they’re not sure if this will be possible or not.  But they’ll try.

So far, she has been there for about a week and a half, and it has been a mixed bag.
On the plus side, she looks better.  She is eating a tiny bit more, and her mental state seems slightly improved.  And the therapists say they have her able to stand on her own, which is an improvement.

The doctor at the facility gives her a 50% chance of survival beyond one year.  This is significantly more optimistic than the 6 months that I’ve read several places on the Internet.  I wonder if this is because she has always been a fighter (she should have been dead about 5 times by now), or because she only has some of the end-stage symptoms (she’s hardly a vegetable; while she can’t walk, asperates, and rarely makes sense, she can still speak in full sentences, control her limbs moderately well, and recognize familiar faces).

Unfortunately, she is developing bed sores.  She has never had these before, and they are most likely the result of her not eating combined with being laid up.  I’ve read that the lack of nutrition makes them difficult to heal.

I had heard of bed sores, but I never realized just how bad they could be.  My grandmom’s go all the way down to the bone.  They are very painful, and they can ultimately be fatal.

The bed sores are being looked after by someone trained in wound-care, and they caught them early.  However, if they don’t heal on their own, and if they cause her more pain, we will either have to re-evalute our decision on the feeding tube, or possibly start her on morphine, which can really throw the breaks on things. 

She will likely be in rehab for several more weeks, so we’ll have time to see how this all plays out.  Fortunately, this is a VERY nice facility (I’m not exaggerating when I say that I wouldn’t object to staying there myself), and this time, she doesn’t seem to mind being there very much.

We’re hoping to have her back home at some point, hopefully with a hospital bed here in the house.  We may also qualify for hospice care.

We’ll see how it goes.

Otherwise

If it’s not one thing, it’s a bunch of things.

In the past week, my grandmom’s house developed a plumbing problem, and our refrigerator died.  So, with all of that, it’s been a stressful August.

My mom is really feeling the stress, but I’m holding up ok.  The Olympics were a great distraction.  I honestly haven’t enjoyed an Olympics this much (summer or winter) since the 1996 Atlanta Games.

Also, in addition to my two days of work in DC every week, I now telecommute an additional half day.  So, I’m working 20 hours per week now, which I like.

I also have a trip coming up–I’m driving across the country with my friend, Matt, from September 7-16.

The routine of a brief hospital stay followed by a lengthy stay in in-patient physical therapy for rehabilitation has become old-hat to me by now (this is my grandmom’s 7th hospital visit since I moved in).  Usually, once my grandmom is out of the woods and is situated in the rehab home and beginning to make progress, I try to take advantage of the fact that she is being looked after.  I try to visit my grandmom in rehab almost every day that I’m in NJ, but I’ve also used that time to get out.  In the past, I’ve used this as an opportunity to take small trips, hang out with friends, work extra days, and just get out of the house.

This time, though, I wasn’t really planning on doing that.  For one, I just went to Chicago at the end of July (I’ll post pictures soon, I promise!).  And secondly, I don’t really feel as burdened out as I once did.  Now that I’ve been working for nine months, I have a routine that involves regularly getting out of the house.  I’m not really going as stir-crazy as I once was.  I feel like I’m finally fully adjusted to things.  I feel like myself again.  So, I wasn’t going to go away.

But then my friend Matt called.  lol.

He told me he was thinking about moving in with my other friend, Dan, in San Diego.  To be completely honest, I didn’t really think he was going to follow through with it.  He had a few valid excuses, one of which being that he didn’t want to drive across the country alone.  So, I said, “Matt, tell you what.  If you go through with this before the end of September, I’ll drive out with you.”  I didn’t really think much of it, because I didn’t really think it was going to happen.

Well, sure enough, he’s going through with it.  And so am I.
I’m really looking forward to that.  I’m hoping my grandmom will continue to bounce back while in rehab so that she’ll be about ready to get home by the time I get back home from California.

So, that’s where we stand as of late August.

VOORHEES, NJ, USA

So, we’re back in the hospital. 
My grandmom fell out of bed sometime early Saturday morning, between 5am and 11am.  Unfortunately, I didn’t hear her fall immediately, so she had to lay there for a little while.  I know there wasn’t really much I could do, short of moving my bed into her bedroom, but I still feel bad that it took me a while to find her.  I guess I was just sound asleep.

She got pretty banged up, but it doesn’t seem like anything serious.  Still, they are going to keep her here for a few days for observation.  Whenever she comes home, we will probably look into getting her a hospital bed for her house.  She has never fallen out of bed before, but we should be prepared so that it doesn’t happen again.

The past month or so has definitely been a challenge.