The Unfavorite Child

I am not my mom's favorite person these days.

Not to say that I ever was. But I think it's safe to say that she liked me pretty well in the past :)

One of the things that we knew would become an issue with this disease is hygiene. This was one of mom's strong points in the earlier stages. In fact, even when mom failed her tests at UCLA, the nurse found the positive for us by saying,

"At least she still takes good care of herself and doesn't need help in the area of hygiene."

At the time, I couldn't even imagine mom needing assistance with her grooming because of her rigid routine (which included showering and toileting-at very specific times) and her obsession with her appearance. Sadly, mom has been losing these abilities little by little over the past several months. I've written a few posts about her diminishing hair and make up skills and the irregular showering. Unfortunately, over the matter of a few months, it has gotten to the point where mom will go all week without showering, until she is forced to get in. Her resistance usually accompanies complaints that she doesn't have enough make-up or a blow dryer (despite the fact that she has both). She doesn't want to mess it all up since she feels she doesn't have what she needs to make herself presentable after the shower.

My dad never complains and rarely asks for help with anything other than supervising mom. He leaves the tougher jobs, like grooming, for himself. After a hard day at a labor intensive job, I know the last thing he wants to deal with is having to forcefully get my mom into the shower. Not to mention that by showering her at night often disorients her into thinking it's morning time (which means dad gets little sleep at night!) He is out the door early in the morning, oftentimes before mom is even awake, so showering her in the morning is tough as well. I decided to make it part of my job and (hopefully) take some of the weight off of dad's back.

Over the past couple of weeks, we've implemented a new showering routine for mom. Every other day, mom gets her shower, whether she likes it or not (I would say not). Of course it isn't as easy as simply telling her to get in the shower. It was tricky at first, but I've pretty much got it down now. Sad to say, but we actually have to remove her clothing from her (she won't do it herself), much like with a little child, to cue her that it's shower time. Some days she will plop her body down on the bed and I have to pull her pants off while lifting her body (that's a good work out!) Other times I can get her into the bathroom first and remove her clothes there. Once I manage to get her clothing off, she usually protests and sits herself firmly down on the toilet, waiting for me to go away. I pretend to leave and crack the door shut; she stands back up, poking her head out the bathroom door to see if I'm gone, and that is when I take my opportunity to guide her into the shower, disallowing her to sit down again (sometimes that results in a naked bear hug as I move her into the shower!) The other day, no sooner did I start taking off mom's shirt than she lamented,

"I don't want you here, I wish you weren't here!"

Later that day, while visiting her sister, she mumbled complaints to Ellen about how I shouldn't "see her naked or plain Jane." I know I am not her favorite person these days but that's okay. It doesn't hurt my feelings. I know that the "real" mom, lost deep inside her somewhere, appreciates all that we do as a family to care for her and keep her as comfortable as possible in her own home.

I'm not writing this post for sympathy or for praise. As much as I hate what this disease has done, I am happy to help my mom. I do not resent that [help] in the least. Neither am I doing anything that millions of other unpaid, family caregivers do day in and day out. Unfortunately, this is a part of life (I would've been happier to deal with it much later in life!) and there are many other families who suffer far worse with their loved ones. Lucky for us, mom doesn't have many of the aggression and behavior issues that many people with dementia suffer from. I don't know if it will come later on, but I'll be happy if we skip that part! The only thing I do regret is making mom feel uncomfortable. While I know that it's become necessary to assist with her bathing, I know she doesn't like me seeing her in the nude. I feel bad about it and try to look away when I can but there's really no way around it. So it goes with dementia.

A Drastic Change

I wasn’t ready for this stage quite yet.

I’ve tried to prepare myself for our future with dementia by educating myself on the disease. I have read books. I have gone to support groups. I network with others online. I think, for most part, I know what to expect. Yet I did not expect to have this issue at this phase in the game. I thought this part wouldn’t come until the end. That’s usually when a person refuses to eat. Or, at least, that’s what I thought.

I know that mom could pass through many phases in this diseases. I’ve read about others who regress back to toddlerhood and infancy, putting non-food objects in their mouth, getting into things they shouldn’t be touching. I know many caregivers have to “childproof” their living spaces to keep their loved one safe. Most, if not all, lose the ability to toilet themselves, shower themselves or take care of any hygiene for that matter. Towards the end phases, many have trouble walking, talking (some lose language completely), and many develop problems swallowing and lose the ability to eat.

Mom hasn’t passed through any of these phases yet. She still takes care of her own hygiene. She toilets and showers herself. She puts on a face of make-up and attempts to curl her hair everyday (though not quite like she used to). Aside from hiding car keys, medicines and credit cards, we haven’t had to childproof anything from mom. I thought she would have to pass through all of these phases before she struggled with the eating phase. I expected it. I guess it’s true what they say. No two cases of dementia are exactly alike.

Over the past couple of months, mom has altered her diet once again. One thing always remains the same, and that is her morning Slim Fast. [Although one minor modification to that is that sometimes she will skip it in the morning now and drink it for lunch instead]. A typical day consists of: Slim Fast in the morning, a sandwich for lunch (with turkey, tomato, sliced American cheese, mayo and lots of sandwich oil), occasionally fruit (strawberries or canned pineapple) or Poppycock for an afternoon snack, and an Ensure for dinner. If we are lucky, she might go out to dinner with us but that has almost become non-existent as well. We can’t even get her to go out to her favorite restaurant (Miguel’s) anymore!

In the past week, the only solid food mom has eaten is some strawberries (twice) and 1 1/2 or 2 sandwiches; this is total for the entire week. She might have tried to eat a handful of Poppycock popcorn once or twice. Half of that food was thrown up. She drinks her Slim Fast everyday, once a day, and drinks a small can of Ensure most nights for dinner. Half of that has been thrown up as well. She only drinks water (about 6-8 oz) when she takes her medication, 3 times a day (as far as I’ve noticed). Try as we might, we cannot get her to eat anything. We’ve tried soups, Gatorade, popsicles, lemon-ginger tea, breads, toast...we’ve even offered to take her shopping to pick out what she thought would sit well in her stomach. It’s no use. Mom has it in her head that if she eats, she will throw up. And when mom has something in her head, you cannot convince her otherwise.

My dad took her to a follow-up appointment with the doctor yesterday…if that did any good. All they did was order more lab work and give her more medicine: one medication to prevent her from throwing up, and one medication to help increase her appetite.

My dad is willing to do anything at this point to get her to eat, including to try this medication. I suppose it is worth a shot, but I’m a bit more hesitant-with good reason. With mom’s disease, the body loses it’s ability to make sense of bodily functions and signals. For example, mom cannot understand why her eyes water all the time; she thinks she’s “so weird” when she burps or yawns or if her stomach makes noises. She doesn’t understand these things anymore or what these functions represent. Along with this, they (those with semantic dementia) lose the sense of knowing when they are hungry or full. I firmly believe that mom’s ability to decode hunger is lost. I think a part of her stomach pains could actually be attributed to hunger pain. But she doesn’t recognize it as such. Instead of eating and ending the hunger pains, she skips meals because she’s afraid of upsetting her stomach.

If my hypothesis is correct, wouldn’t it be logical, then, to say that this medication will only worsen her stomach problems?

Mom now weighs in at 126 pounds. That means she has lost another 14 pounds in the past 5 months and I would say most of that has been in the past 2 months. If this drastic change in her eating continues, at what point will the doctors do more than just prescribe a pill? I’m not sure what this means for the future. Is it just a phase? Will she eventually start to eat again? Or has she taken a drastic turn?

Housekeeping

When I was growing up, my mom was an immaculate housekeeper. I mean it. You could take a white glove to any part of her house at any given time and it would remain white.

Saturdays were her cleaning days. We did our jobs during the week as well, believe you me! But every single Saturday was deep cleaning day. Every square inch of the house was dusted, vacuumed, scrubbed, mopped. She wouldn't do anything "fun" until all the chores were done.

She had us trained, too. On Saturdays, we were not allowed to go out to play or hang out with friends until our assigned chore was completed. If it didn't meet her satisfaction, we were sent back in to redo the job.

Over the past couple of years, my mom's house has been less than immaculate. At first, it was clutter piles building up. Around the time this started, my grandparents died and my dad was bringing home and sorting through their things; my grandma was a hoarder, so it was more than just a couple of boxes of stuff, to say the least. We chalked the mess up to grandma and grandpa's "stuff".

As time went on, we began noticing more than just clutter. The first time I realized that there was a real problem was when I went to use the bathroom and discovered mold in the toilet. I couldn't believe my eyes! How could this have happened??? My mom would NEVER allow such uncleanliness in her house!

The more and more time went on, the less and less housework seemed to be getting done. Soon, dust was settling on picture frames and furniture. Floors went longer and longer between moppings. Dishes were beginning to pile on the counters for, sometimes, days before she would tend to them. It seemed she had completely forgotten the jobs that needed to get done. When we would bring the topic up for discussion, mom just complained that she was too tired and sweaty to finish her tasks, or she would make comments such as,

"Yeah I did dust the pictures before," not seeming to realize that this is an ongoing task.

I watched my dad struggle to keep a balance with work and the new roles he was having to assume. Mom and dad always had very traditional roles in our home: dad went to work and mom took care of the home. My dad has always worked long, hard days (in the construction business) and mom was more than happy to take care of the rest of the household duties, along with the help of us kids. I can remember a time or two seeing my dad scrub toilets or do some dishes, but for the most part he's never had to worry about that role.

A few months ago, I realized that we, as a family, needed to step in and take some of this burden off of my dad. I made a goal to go over once a week to help with some housecleaning. I started out doing well...and then summer came and I had all 5 kids at home with me! A couple of times, I took the kids with me to help with some of the chores.

One day, as I worked on decluttering and organizing bookshelves, my two teenagers gave the kitchen a good scrub down. They started by unloading and loading the dishwasher before cleaning the stove and countertops. My mom came in and just about had a conniption fit.

"What are you doing? Those dishes are clean," she said when she saw the girls loading the dishwasher. Upon explanation, she turned to the cabinet to inspect the clean dishes that were just put away.

"No! You're not doing it right! These are still wet, now you're messing them up! I leave them in there for many hours to dry. I have my own way to do this, too! And I have my own way of putting in the dishes, too. You're not doing it right!"

I tried to talk calmly to her and assure her that the girls were only trying to help.

"No!" was the answer she continued to give, with a disapproving shake of her head.

I admit, I felt a little defensive of my girls. They were giving time out of their summer to come over and help, and I was afraid mom might have hurt their feelings. Luckily, as I later apologized to the girls for my mom's reaction, they were very loving and forgiving.

"It's okay. We know it's not her fault, she doesn't mean it."

Eventually, I was able to calm mom down and convince her to leave the kitchen-only after reassuring her that I would make sure all the dishes were dried and put away in the right places.

As you can see, there's been a learning to curve to helping mom. I'm slowly learning which chores I can take on, and which I should leave for my mom. The chores she continues to do are dishes (though they will sit for a couple days sometimes), laundry and she will vacuum the living room rug. Occassionally she will clean the toilet in her bathroom. It is a short list, and she only works in 10-15 minute intervals before she gets too tired and too sweaty and needs to lay down for a rest. She's more likely to get off the couch and work when someone else is over there working, so I feel like me being over there is good motivation to get her doing something productive, even if it's only for short intervals.

As I've been over there this week, I have focused on decluttering and organizing. I've thrown out several boxes of trash and started another big box to give to Goodwill. I've been able to finish 2 bedrooms, the Tupperware cupboard, and the towel/sheet cupboard. At the beginning, mom uneasily paced nearby to make sure I wasn't messing anything up or throwing anything important out. Occassionally she would get in my way, on a quest to look for something. Eventually, she retreated to the office where played her computer game until naptime.

My new goal is to go over once or twice a week to finish decluttering and organizing the house. I'm also going over to observe mom and make sure she's okay by herself throughout the day, which I'll write about another day (I know, I said that in the last post, too). Other family members have offered to come over and help as well...we'll see how that goes. I think if I focus on the organization issues, anyone else can focus on the surface cleaning. Hopefully, we can relieve at least some of the stress that has been placed on my dad since this whole journey has begun.