Memory Care Here I Come

The day arrived as any other day would. It's summer. Beautiful blue sky, warm temps. It's July. Or is it August. What day is it? What city are we in? What planet do we live on? That last question was posed to my mom. Her answer....the United States. So it is with Stage 6-7 Dementia. That flavor of Alzheimer's that hits you hard. And takes away the only thing that makes up your life: memories.

It's been about 5 years to the month since I first started this blog. Hell, I forgot to post many of the most important stories. But today is a big day. I'm moving Mom to the memory care area at Harbour Village in Glendale, Wisconsin. I can honestly say I don't think she'll live 5 more years.

My mother-in-law stayed at Harbour House, which is the quaint name for memory care at Harbour Village. I think it's one of the best in our area. With an entry price of $4900 per month, I believe it's reasonable. I didn't shop around. I heard what many others are paying. Just the other day a friend of mine said his mother is in a place in Chicago at a whopping $10,000 per month! Now, she needs advanced medical services too, which are extra, no matter where you go. At Harbour my mom's bill will be $500 extra per month for medical services. But at what price, life? For our family, we have the money to go the distance, whether that's good or bad, I don't know.

When you see some of the residents, I'd say it's not living; it's existing. Waiting to die. Many don't even know it. Their brains are so deteriorated from the disease they don't even have the cognitive reasoning to know they're dying. But hey, let's spend thousands of dollars a month so we can watch you wither away in front of our eyes. Because that's the right thing to do? Memory care. If you have no memory, what are they caring for? The more I write, the more it makes me wonder what the hell am I doing?

I asked my mom what she would want me to do if she reached the advanced stages of dementia. She said, "Kill me." And while I agree it could be a merciful thing to do, I have to let God make that decision. Plus, would I have the balls to actually do it? Her suffering isn't that great, yet.

A friend of mine, his wife and I moved my mom out of her two bedroom apartment into the "room". It's a studio, with a toilet room, a closet and a window. The exit doors are locked. Code access only with assist from the staff. Family does not get the code. Residents don't get to go outside unassisted. The courtyard is fenced, with no gates. It's kinda like a fancy prison. With Dementia as the warden. You don't even need to misbehave to receive more quarantine punishment. The disease will take care of that all by itself.

So, we're all situated now. New mattress pad to soak up the pee. Smaller bed. 1/10 of your clothes. Memories will be made at your new home, Mom. The finality of it all hits you: This is where you will die. Call it cruel or morbid thinking. But it's true.

We're All Going to Die Sometime

Such profound words from a woman with Stage 6 Dementia. The crippled mind can still associate human emotions with consequences, even if they're not the result of immediate actions. Today we met with the caregivers at Harbor Village. The time is quickly approaching when we have to make that tough decision about moving Mom to memory care.

It's been months, maybe a year since my last post to this blog. Life just flashes by; who's got time to write about memories. Especially on a blog that so few know about. But, so many are in the same boat. With Alzheimer's and dementia cases climbing at astronomical rates, lots of families will be impacted. For me, at 58, chances are I'll be diagnosed at some point. And when we reach this point where you can't take care of yourself, and your actions are viewed as "dangerous", the family is left with a choice: what to do with the patient. Remember caregiver, that's my mom (or dad).

So cold and seemingly matter of fact was the discussion.My sister is an RN and works with people who are dying: so close to death they can taste it. And they surely resemble it with their outward appearance. It's interesting when you see someone at the end of their life and think "they look like they're going to die." At least, that's the way I think.

"Mom, nobody's going to die." Those were my calming words. Even though, strangely enough, this move, this place, memory care, is about getting ready to succumb to the disease. For my mother-in-law it took 8 years of getting ready: Physically strong, mentally wasting away, it was brutal to watch this person remain alive with advanced Alzheimer's.

Christmas memories

It's hard to remember to update this blog! And to think it's primarily about my mother who has Dementia and Alzheimers. Its her memory that's fading. Whatever.

It's Christmas 2012. My mom is still an active part of the family get-together. She can still interact with everybody. She doesn't remember everybody's name all the time, but she did pretty good this year. Her biggest concern was if I/she remembered to hand out the Christmas cards/money gifts to the 5 grandkids. I did remember, and that means she remembered.

She still eats good, can still laugh at things, though she takes my dry sense of humor to heart and thinks I'm serious when I'm just trying to be funny. She misses my stepdad who died 5 years ago. She says Christmas is the toughest time. I think most people share this emotion when the loss of a loved one is magnified.

It's all about family. Trying to remember to be "there" more often than I might like. I think most families are a bit dysfunctional in their own special way. Lots of stories are always shared about how this person does this, or that cousin did that, and how "I'll just figure out how to suck it up for a couple hours when we're over at __________ house. (Fill in the blank with the obnoxious family members). But when you're laying in that box (or urn) dead to this physical world, who do you think is going to be at your funeral? Probably the only people that matter: Your family. Accept it's too late to say you're sorry or wish you would have said "I love you" more, to your mother, father, spouse, child...

Christmas is full of memories and traditions. Savor the moments.

Another Day Gone By

Imagine not knowing what day it is?

When I go on vacation I really want to forget what day it is and just relax. Unfortunately I have to remember when it's time to pack and go back home. Now that sucks!

So many things we take for granted: Like waking up and knowing what day of the week it is, what month we're in, and the year. My mom is having a really hard time with that. Stage 4 Dementia. She has a big printed calendar on her kitchen counter...but she doesn't know what day it is when she looks at it.

So we bought her a digital clock that has a calendar feature; day/month/year. Just for today, she can look at it and know, not remember, what day today is. She puts an X on her printed calendar marking another day gone by and knowing that she is losing her memory.

It's Monday, October 22. I know that for sure because my computer calendar shows that. I guess it's right. The TV news told me that too. For the working world, Monday's suck. As fast as time goes by right now, Monday is great. I've got a second job interview this morning. It could be a really great Monday, October 22, 2012. Do you remember what you did last Monday? You probably have to go to your calendar to jog that memory....

Losing It

Many days pass. Today Mom called me and said "she doesn't want to lose her mind." What a sobering thought: Losing it. She works with a therapist to help her with cognitive issues. Simple things like word recognition, association, counting, memory. The things we all take for granted every day when we wake up and the wheels start to turn. We all seem to have days when it feels like we're losing it. It's a common phrase. Those bad days when everything is coming at us at full speed and our minds are on overload...and we forget a couple things, or misplace our keys, or just feel overwhelmed with life. And then, tomorrow comes.

Psychologist is Crazier than Mom

Still hard to keep up with this blog. This past Wednesday I went with mom and my sister to the psychologist for the follow up visit to get her "test" results. This was from a series of memory and cognitive tests she had about a month ago following her meltdown at the restaurant with my sister.

Mom kept telling me how much she liked this doctor. She told me about four times on the way there. We'd soon find out.

Once in the office, she kept asking mom about her earlier comments on being sad or sorta depressed. Must have asked a dozen times, to the point where it was annoying. Did she want to say she's depressed? Just another chance for more drugs. But in the end, mom isn't depressed and said she's pretty happy right now. So good, we're done with the damn depression exam.

Dr said she did good on verbal testing but not so good on short term memory stuff. I couldn't help but think that I can't remember what I did yesterday, so what!

The blow up at the restaurant was puzzling to the dr. Really didn't have an explanation as to why it happened but thought it might be vascular in nature. Mom had a CT scan done, but this bozo doc didn't have the results in her file and failed to look it up on the system. This really pissed me off. The scan was done in the same hospital this dr works at. All she had to do was call up the patient and the records would be right there. She even asked if we had the results! WTF! And we're going to have to pay for this incompetence? So it could have been a mini-stroke, with no symptoms, but it would have shown up on the CT scan. Even more disturbing that she didn't investigate this stuff.

In the end she didn't think she had Alzheimer's. What? Two other drs said she did. All I know is her memory is bad, but seems to have stabilized for now. In my opinion, this psycho/shrink doctor is just as crazy as my mom.

Early Arrival

My daughter was involved in her school concert this past weekend. My mom was going to come to hear her sing. Over the course of the last week, she asked me, and I told her about three or four times that is was Sunday and to show up at my house around 3pm. She called on Saturday morning to confirm, again, what time she was supposed to come over.

The weather was pretty nice for March 20th, so I went for a walk in the early afternoon. When I was coming up the street I noticed my mom's car in the driveway. What was she doing......here? I quickly surmised she got her days wrong and was here on Saturday instead of Sunday. When I came in the house she was very apologetic, saying she could leave and calling herself stupid over and over.

Of course she stayed. In fact, for some reason she brought a suitcase for an overnight stay. The plan was to go to the concert and then go home before it got too dark (she doesn't like driving after dark). It all worked out, all of us went out for a nice Italian dinner and came home for some NCAA March Madness. At least I enjoyed that part!

On Sunday, I cooked up some French Toast and then her and I decided she should try her hand at oil painting. Not bad for a first time artist. She was able to stay focused through the whole one hour event, and it felt good for me to see her do this. After we got done, I paused and got a bit choked up thinking that there won't be many more times I will be able to share a moment like that.