Gary BUTTERWORTH Online

STRATFORD, NJ, USA

So, yesterday marked a year and a half since I moved back to New Jersey, and today marks a year and a half since I became my grandmom’s caregiver.

For most of the past 18 months, I’ve tried to use the “anniversary” date each month to provide a little update/recap of life with Nana. I’ve gotten out of the habit of doing these properly over the past couple of months, but I think it would be good to get back into the habit.

A year and a half is a long time when most days are the same. Heck, with the amount of repetition that can occur in just five minutes with an Alzheimer’s patient, an hour can be a long time! Since Alzheimer’s is generally characterized by a slow decline, and since the days run together, I don’t usually perceive changes in my grandmom’s condition. They usually come so slowly that they aren’t easily noticeable, or, in the rare instances in which I do notice a dramatic change, I can usually write it off as a fluke–a one-off “bad day.”

Writing these updates gives me a chance to take a pause, look back, and evaluate things. And, I’m sad to say that this month is the first month that I can report that I have noticed a sustained decline.

Decline

It’s not a dramatic decline, and it hasn’t occurred suddenly; in fact, I might not even notice it if I didn’t stop and think back to how she was a year ago. But the decline is there nonetheless. Mostly, she just hasn’t bounced back from her February hospitalization.

Whenever my grandmom is in the hospital, she is almost completely out of it. She hallucinates, reaches for things that aren’t there, walks the halls naked, etc. She always improves when she gets home, but it takes a while. During her first week home, she can get so bad that my mom questions whether our current arrangement is sustainable, or whether she needs more professional care. Still, she has always rebounded. A month after she’s home from the hospital, she’s usually back to almost the place where she was before she went in.

Usually.

This time, though, she just hasn’t bounced back to where she was before her most recent string of hospitalizations that began in December. I thought she would bounce most of the way back, but she hasn’t.

Granted, she is definitely better than she was when she was released from rehab two months ago. But she is still noticeably worse off than she was before.

How does my grandmom’s current condition compare to her condition when I moved here in November 2006 and to her condition before her hospitalization in December 2007?

Physically:

Most of the changes I’ve noticed to my grandmom have been physical.

When I originally moved in here, I was trying to ween her off of her quad-cane and get her into the habit of using a walker. She actually did pretty well with the cane, but she really needed the extra support of the walker. With it, she actually managed to get around the house pretty well.

As time went on, though, her physical condition declined. Around six months ago, I found that she occasionally needed help cleaning herself after using the bathroom.

Now, she needs help in the bathroom 100% of the time. In fact, she now has trouble even getting into the bathroom. It seems like, at least once a week, I need to put her in a wheel chair to take her to the bathroom (or her bedroom), and sometimes we need to use the commode in the hallway.

Falls have always been a concern. In fact, it was a fall in 2006 that made us realized that she was no longer able to live on her own, and it was a fall in the rehab home in February to which I attribute some of her recent difficulties. Although she has only had one fall since she was home (and it was very minor), she would have had about 6 other falls in the past month if I wasn’t walking right behind her to catch her. There have also been about 4 or 5 times when she has gotten so tired walking the 30 feet to her bedroom that I’ve had to pick her up and carry her the rest of the way. She just doesn’t get around very well.

She also cannot get into bed without assistance, and it has only been in the past week that she has again had the strength (or is it memory) to get out of bed on her own. She also needs help getting up from a chair about 75% of the time these days, compared to maybe 25% of the time from when I first moved in until her December hospitalization.

I don’t know if this means anything, but she has also been having a much more difficult time swallowing her pills every night.

We used to try to take her out of the house to get her hair done every week, or at least every other week. Nowadays, between her general weakness and the effort it takes to get her ready, we are only able to take my grandmom out maybe once a month. It would drive me crazy, but she doesn’t seem to mind. She loves being at home.

Despite all of that, her health is relatively stable. With her 90th birthday coming up next week, my grandmom isn’t in any imminent danger. She’s doing ok.

Mentally:

This might sound surprising considering that I’m describing someone with Alzheimer’s, but I haven’t really seen much of a change in her mental state. Sure, she might be a little worse, but not all that significantly.

My grandmom’s mental state has been less-than-ideal for so long that, in a way, it feels like forever.
Sure, I have plenty of memories of times I spent with her as a child, all the way up through high school, when she her normal self. I have hundreds or memories, some of which are even detailed.

But Alzheimer’s has been a reality for my grandmom for so long that those memories don’t feel all that real. In a way, it feels like she has always been like this.

Maybe that’s the reason why I don’t notice changes to her mind; they seem normal.

In the first year that I was with my grandmom, she had three or four days at home when she just seemed completely gone. It was almost like she was on drugs: one day last summer, she was convinced that she was pregnant. Another, she was a 40-year-old woman thinking about going back to work.

Those days when she hallucinates have always been a rare occurance; for my grandmom, Alzheimer’s has been marked more by confusion and repetition than by hallucination.

But she has had 3 of those hallucinating days in the past month; that’s about the same amount that she had in the previous 17 months combined.

Aside from that, though, her mental state hasn’t changed all that much. When I first moved in, I’m pretty sure she know that I was her grandson. She still knows I’m Gary, and she still knows I’m part of her family, but some days she thinks I’m her son. Some days, I’m her husband. Some days, I’m her son-in-law.

She forgets having eaten within minutes. If I’m sitting on one side of the sofa and she is looking three feet away at the other side of the sofa, she’ll call out at the top of her lungs, “Gary, where are you?!”

Sometimes, she’ll ask me if her watch is right every 5 minutes for two hours.

Still, as repetitive (and annoying) as that is, it is mostly par for the course over the past 18 months. The specifics change, but the habits remain. When I first moved in, she might ask me where her flashlight is 30 times in 10 minutes. She hasn’t mentioned her flashlight in over a year, but now she asks the same thing about her glasses.

So, her mind might be a little worse. The fact that she has had three days in the past month when she has been in her own little world is a little alarming. But overall, I’d say that her mind has remained more-or-less the same over the past 18 months.

Statistics

Just for fun, here are some numbers:

I have now spent 9067 hours hours with my grandmom over the past year and a half. This accounts for 69% of the time since I moved in with her, and 84% of the hours that she has been home (i.e., not in a hospital or rehab). It would take more than four years and four months of work to put in that much time at an average, 40-hour per-week job!

Since I moved in with my grandmom, she has spent 97 days in hospitals and rehabillitation homes. That’s 18% of the past 18 months!

Of the time that I’ve been here, the five months of 2008 have been among the best. I feel a little bad about saying that, because I’ve spent less time here in the past five months than I did the previous 13. In 2008, I’ve spent 1843 hours with my grandmom; that’s only 41% of the year to date! That’s because Nana has spent 45% of 2008 in hospitals and rehabilitation.

Of the time that Nana has been at home in 2008, I have spent 75% of it with her. Maryann, our home health aid, has been at home with my grandmom about 20% of the time; she’s here for the 40 hours per week when I’m in DC or in transit. So far this year, my mom has cared for my grandmom about 5% of the time that my grandmom has been home.

Me

Still, I’m doing pretty well. Certainly better than I was doing at this time last year.

Working two days per week has done wonders for me. Now, every week, I have something to look forward to. It breaks up the monotony, gives me a chance to polish my skills, interact with my peers, make some money, and just have a change of scenery.

Even on the days that I’m at home, things seem to be going better. My mom’s new job has taken a lot of the stress off of her. Tiffany has been great about supporting me on rough days. My new computer gives me more options for passing the time. And, as odd as it sounds, having a pet makes me feel better, too. (I have a friend who is in a situation similar to mine with her grandfather, and she has made the same observation about having a pet.)

It is still tedious at times. There are million things that I’ve wanted to do but haven’t been able to because of my commitment here: sports games, movies, trips, etc. Days are often monotonous, and I sometimes feel lethargic.

But those negative aspects feel more like major annoyances than causes for depression.

At a year and a half, things roll on. My grandmom isn’t doing quite as well (fortunately, she doesn’t realize it.) I’m doing better. But overall, things are going all right.