Tuesday, March 25, 2008

Umm, Remember, She's The Crazy One

I can't believe how long it has been since I've posted. I've thought about it for the past 10 days since mother dear was feeling sick and I kept thinking that if I waited just one more day I'd have something more to report.

With my mom, and I suspect with other dementia patients, it is hard to determine exactly what's wrong when they are sick. Mom also uses inventive ways to get attention by accentuating things. Cases in point:
— She can make her teeth chatter and body shiver when she says she's cold. And it's 85˚F in here and everyone else is sweating.
— She does a thing where she says she can't talk and acts like she has a thick tongue.
— She grabs the door jamb and says "I'm gonna go down" from being dizzy. Of course, she walks all over the house and doesn't have a spell until you can see her.
— When she needs a tissue, she talks like she has a stuffy nose even though her nose is running.

My point is that I never know when she's really sick, when she isn't sick but her dementia says she is, or she's doing it for attention or some other reason. That adds a layer of stress on me since I have the responsibility of trying to figure out which it is, and if I ignore something that turns out to be real, the blame will rest on my shoulders.

Back to my story. For the past week and a half, she was complaining of an upset stomach and nausea, didn't want to eat, and was sleeping a lot. I took her temperature and it was 97˚F. I asked around and no one seemed concerned and suggested she had caught "the bug" that was going around.

A couple days went by and she refused to eat anything and drinking was infrequent as well. She was less disoriented by the middle of the week and able to eat half of an egg salad sandwich and drink some ginger ale. That worked a couple of days in a row and I coaxed her with some french fries on Friday. She was weak but improving. I also was giving her Tums for the upset stomach.

I considered that she was fighting acid indigestion based on the stomach pain and all the burping. One of the pills I had phased out as part of my less medication is better campaign was Prilosec (for acid reflux) so I started her back on that.

I thought more about it and it seemed to start when she went from 5mg to 10mg of Aricept. I went on the web site and the side effects they listed were everything she was complaining about. But it said they were temporary so I figured if this was the case it would pass.

Yesterday, after another weekend of no food and little to drink, I made an appointment with the doctor. I remembered that her mother had gallstones at this age and had to have her gallbladder removed. So I was more concerned that it might be something that can't be resolved at home with trial and error.

She got up at about 1 p.m. (the appointment was at 3:30) and stumbled into the den holding her stomach in pain. I reminded her we were going to the doctor to find out what was wrong. "I have to take a shower," she proclaimed. I jumped on that, called the aide in from the other room, and started that process. Until mom asks why she's taking a shower, and when reminded that she had asked for one, states disdainfully, "I would never suggest such a thing in a million years!"

After some persuasion, they get the shower out of the way and get dressed. I had asked the aide to come with me to the doctor. Based on how weak mom was acting and the pain she was in, I thought I'd have to go into the office for a wheelchair, and having someone to help me would be a good idea.

Until we get to the doctor's office and mom hops out of the car and has no trouble walking at all. As we sit in the waiting room, mom is acting like nothing is wrong and can't understand why we're at the doctor. We get into the examining room and it's more of the same. She can't understand why I'm telling the doctor all these things. Her favorite saying when she doesn't remember saying or doing something is, "Where was I?"

Of course, I prattle on to the doctor about the past 10 days and her denials make me look like the crazy one! She lays on the examining table and the doctor pushes around on her abdomen trying to find the problem. Nope, no pain there!

I asked her, "If I came in with a bowl of ice cream right now, what would you say?" For a week, she's said she couldn't eat it, she wasn't hungry, her stomach hurt, etc. Nope, she answers that she'd say, "Thank you." I just about fell out of my chair.

• The doctor said everything I'd done was what he'd suggest. His inclination is that acid reflux is the problem and to double the Prilosec.
• We have scheduled an x-ray to see if there is anything wrong with her gallbladder.
• A blood test revealed she is low on potassium so I pick up a prescription for that today.
• I'm going to break the 10mg Aricept in half and give one in the a.m. and the other in the p.m.

When this whole episode began, I was certain we'd end up in the hospital and that would be the beginning of the end. Not this day. We returned home and the aide prepared a big bowl of ice cream to test her. Sure enough, she ate the whole thing. At night, I decided to act like she never had any problems with eating. I offered her chicken and rice or macaroni/tuna salad. She opted for the salad and ate a whole plate full. On the one had, I'm glad she ate. On the other hand, I feel like she has been jerking me around.

This is what makes me angry. I've been worried for over a week that she was going to die on my watch because I made an error in judgement, then we go to all the hassle of getting to the doctor, and she acts like I'm the crazy one!

Update: As I suspected, mom got up about 1 o'clock and shuffled out of the bedroom holding her stomach and complaining of the pain she was in. Heh, deja vu. Food? She had no interest in food of any sort. I dished up another plate of the macaroni/tuna salad but it sat in front of her with her nose turned up. However, the good news is that she ate it all while I was picking up the prescription for Potassium.


Greg said...

Ha.. that was more amusing to read than I'm sure it was to live through. It brought back some memories of visits to the Doctor with my Mum (and, for good measure, try orchestrating one from 300 miles away sometime...). Reading this post, I remember that my Mum seemed to enjoy all the attention. Do you think yours might be feeling the love when you get concerned for her and hover over her dinner plate. Being ill gives her carte blanche to come into your bedroom at night, too. I wonder if it's a half-conscious power play at some level? Just a theory. Kids, eh? Who'd have 'em? Oh.... yeah...

Jodi said...

I had my gallbladder removed 5yrs ago. I had it done laperscopically. My question to you is..when she comes out holding her stomach, is she clutching the front of her abdomen or holding her right side? Now I'm not sure if this is true with all cases, but my right side of abdomen hurt from the front around the side & into my back. Just was wondering if she was favoring a certain area of her body when she complained.

One suggestion..just in case if the X-Ray doesn't show anything and the doctor required further testing. The doctor made me do an Upper GI series which I despised. I did not know that they can do an ultrasound of your abdomen & it could tell if you had gallstones. I guess though just in case, the Upper GI could tell if she had acid reflux. The only bad thing is you have to drink this horrible chalk-like drink before & during the test. Blech!

Good luck to you. You are a wonderful son for taking care of your Mom like this.

Gavin said...

greg--I have no desire to have kids...it's hard enough having parents!

moodyblue--The doctor said the pain would be on the right side but she holds her left. In any case, she didn't react on either side when he was pushing during the examination.

We're going to do the gallbladder scan, and if that doesn't show anything and there isn't any improvement with the increased Prilosec, he's going to refer us to a stomach specialist. He said that upper GI x-rays are old technology and now they go down the throat with a scope because they can see things better. I had an upper GI when I was little and I can still taste the chalk 30 years later!

Lacey said...

You know, you need to prepare yourself for the possibility that she WILL die on your watch. I mean, I hate to see you beat yourself up. You are doing SO much more that most people do for their aging/infirm parents. Mine have lanquished in nursing home care for the last 8 years, for example. EIGHT freeking years. Wow. Talk about guilt.

Anonymous said...

You should really be writing a book based on your experience of caring for your mother. It would be a boon to the many of us that are going through the same thing, but not yet at the advanced stage of your mother's illness. I think that you are one helluva a good son by the way. You may not feel it all the time, but you have an inner strength that amazes me.

A Single Man said...

Sigh. I can't tell you how many times I've experienced things like this: telling me he's sick, no he's not, what do you mean you're sad? Random and bizarre is an understatement...like living in a hall of mirrors or a reality distortion field.

It's tough when you are taking responsibility for caring for someone who can't validate your experience doing that. THis is one of my biggest issues with H...one of the hardest parts is his discounting of what I see and my experience and then telling me that I'm wrong or "crazy" or being unreasonable.

YOY, please know that you are doing the best you can and to not have any guilt about that. You can't take responsibilty for everything...don't blame yourself, don't be so hard on yourself. It's not your fault if she can't remember, thinks you're crazy, or is so fragile that a simple med change causes issues for her (or not).

Caring for someone with dementia is one of the hardest things to do as a caregiver, I think. If someone is cogent, then at least they have the faculty to consider another person's experience. BUt without the faculty, or one that comes and goes, they just think that they are right and others are crazy.

I understand your anger at being jerked around. I have this with H as well. But when I've stepped back, I've realized that it isn't intent...he's just way more random and crazy than I would like. And I'm PO'd at that. But he doesn't mean to make me crazy and I doubt your mom means it too.

Sigh. Hang in there. I feel for you and am sending you prayers.

proudprogressive said...

yeppers YoY , you err on the side of safety and it is very hard to detach and not take it personally. ie. "this make me look like the crazy one" the medical staff fully understand what is going on. The reasons..could be myriad and as likely said above random , and more inadvertantly manipulative than they meant to be , because there is no scheming or plan on her part..its just free floating emotion and or pain coming up. Give yourself a little bit of a break, its true she may die peacefully , blessed while under your care.

* Try to keep a sense of humor and above ALL get out regularly for your R and R. Care giving is HARD WORK..kudos to all of you in the midst of this process.

One thing that seems to universial , behaviors get more erratic, reasoning less and less dependable. Assessing what is "wrong" very tricky as the folks are not "reliable reporters" and yet are manifesting real discomfort and behavior changes..its up to you all to suss it out..even inspector Clouseau would have trouble with that !!