Elvis has left the building

Like I tell people, this situation is always evolving. Never underestimate the ability for things to change...FAST.

Yesterday I was upstairs collecting garbage. I heard Mom saying something, kinda loudly, which is unusual. Finally, I hear her yell: "KAREN, DAD IS OUTSIDE."

I threw down the garbage and ran downstairs. I knew this didn't mean he was on the deck where he's been many times. Nope. He walked out the front door (left it wide open), went down the front steps (there are about 20 of them) walked down our street (we live on a hill) down to the sidewalk. Then he turned around, walked back and up the stairs and walked inside like it was no big deal.

I said: "DAD, WHAT ARE YOU DOING?!" He looked at me calmly and said: "I went for a walk. You told me I needed more exercise. My back feels absolutely perfect."

*Cut to me burying my face in my hands.

Look, this is bad. This is VERY bad. This means Dad can't be trusted to stay in the house. Until now, I felt safe in the knowledge that he didn't have the leg strength to "escape." Suddenly he's had a miraculous cure?

I don't know what to think, but I'm pretty sure that now I have something new to worry about.

The Artist

Dad is an artist. He never went to college, but he did go to art school at the Art Institute in Chicago. He became a commercial artist and worked as an art director in the point-of-purchase industry, i.e. displays that you see in stores.

Yesterday, my son had a posting on Facebook that he was looking for someone to create artwork for the demo of the new musical that he has written. A couple of his friends offered their art skills but had limited time. I sent him a quick message and said: "If nobody can do the art, Grandpa could use a project." My son sent me an excited text saying that he'd love for him to do it.

The timing was perfect. I had just finished telling Dad AGAIN that he wasn't going home. Actually, here's the conversation:

Dad: Hey, a week from Saturday, we're going to pack up.
Me: Um, OK. Where are you going?
Dad: Home, duh. 
Me: Dad, we talked about this yesterday. You can't go home.
Dad: We did NOT talk about this.
Me: Yes, we sat on the deck and had a long conversation about how you and Mom need somebody to care for you.
Dad: We don't need anyone to care for us. We're fine.

The conversation went on, but needless to say, I once again disappointed him. But somehow, this conversation made ME feel better because it reinforced the dementia diagnosis. I felt slightly less crazy. I still felt crappy, but less crazy.

So I got the text from my son, asked him for some direction in the illustration and then bounded into the library with an assignment for Dad. I told him his grandson needed his help and that it had to be done quickly.

Dad sat at the dining room table with the list of elements my son wanted in the illustration. Within 5 minutes, he created the art you see above. 5 minutes. It's definitely rough. You can see the shakiness in his hands, but my son LOVED it. And for those 5 minutes, Dad felt needed. He felt valued. Somehow, I have to make that happen more often.

The interesting thing about dementia is what Dad's brain retains and what simply escapes like a wisp of smoke. The art is in there, somewhere. I've been trying to get Dad to draw since he came here, but I guess he just needed a specific assignment.

Poop meets the fan

I'm really confused. Well, maybe not confused...yes, well, maybe I am....

Dad sat me down yesterday and said that in two or three weeks he will be ready to go home.

*Cut to me burying my face in my hands. 

Here's what's so hard about this: He seems absolutely perfectly lucid and calm. We had a thoughtful discussion during which:

• He disagreed with my statement that he's fallen at home. (Said it was once and that he tumbled onto one knee.)
• He blamed his one fall here on his socks matched with my slippery floors (even though he fell in the carpeted bedroom.)
• He said he's growing stronger.
• He told me that he feels that he's intruding on our life.
• He told me that he and Mom really miss their house.
• He said the management of his/their medication is "not rocket science" and they don't need help with that.
• He said that the next door neighbor will drive them to medical appointments.
• He said that he'll take taxicabs to other appointments.
• He said they're only a block away from Trader Joe's where they can get food. 
• He told me that he'd rather kill himself than live here for 10 years.
• He said that nobody asked him if he wanted to come here. (Duh.)
• We discussed the possibility of them moving into an assisted living residence and he said that would be more isolating than our house because he'd have to interact with "new people."
• We ended the discussion with him saying that we are going to sit down every Saturday and have a "campfire" meeting and discuss how they feel about everything.
• He came back a second time and said that maybe we can hire a personal assistant who can be "here."

I told Mom all of this and she buried her face in her hands.

My head is spinning. I'm trying my best and it's not good enough. Plus, Dad DOES seem more coherent, but I think part of that is that he's trying to prove that he's OK to move back home. Last night, he was yelling for Mom so that he could do his PT exercises. Suddenly there's enthusiasm for such activities?

I know he hates it here, which makes me feel TERRIBLE. I said I was OK with being the bad guy...and I am. But when the rubber meets the road, I'm a complete wuss. I don't take it lightly that I've ripped someone out of their home and put them someplace they don't want to be.

God help me.

Keep calm and carry on

So Mom took me aside yesterday to tell me that Dad is hatching an escape plan. He's decided it's time to go back home. Apparently, the first part of the plan involves writing down my sister's phone number. (Not sure what that's going to do, but, OK. Sis, consider yourself forewarned.)

Mom said she re-explained to him that he can't take care of himself. Somehow they ended up with this compromise: Every day they are going to write on the calendar how they are feeling. One day at a time. (Again, not sure what that's going to do, but OK.)

This brought up my newest dilemma: How do I deal with situations like this? When someone with dementia hatches a plan like this, what's the best way to respond?

A) Sit down and calmly explain AGAIN that there has been a dementia diagnosis and that living alone is not an option.
B) Acknowledge the escape plan and offer an alternative.
C) Keep calm and carry on, i.e. ignore the escape plan and know that this too shall pass.
D) All of the above.

Hubby and I had a LONG discussion about this. No, I do not want to attend a support group meeting. I seriously just need to call 1-800-DEMENTIA and ask how I handle such a situation. My first instinct is to treat Dad with the utmost respect, acknowledge his wishes and explain why they cannot be granted.

The problem with that approach is that it means re-introducing the dementia diagnosis and, for some reason, just doing that seems to induce confusion and anger. I don't need angry and confused Dad. I need happy and content Dad. He's easier to deal with.

Offering an alternative seems to open him up to the possibility that there's a chance I'll spring him from this suburban prison. Sure, there's a chance, but there's no other place to offer. If I could give them some independence, I'd do it in a heartbeat. Right now, it's not happening.

So, we're going with option C - Keep calm and carry on. I will pretend that I don't know about the escape plan and continue to offer HD TV, yummy meals, gentle scolding and sub-par accommodations.

Sometimes the best thing to do is nothing at all.

Pity party

Yesterday was rough...for many reasons. Partially because it was the first day of the holiday weekend and I couldn't do what I wanted...even though I probably wouldn't have done anything differently. It's all about perception. I think I'm trapped, but I'm not. Not really. I can do virtually everything I could before. I just have to plan a little better. Truly not the end of the world.

But sometimes I feel like having a tiny little pity party. I feel sorry for my self...for no damn good reason. This is where the words of my father echo in my head:

QUIT YOUR BELLYACHING.

Anyway, at one point, Hubby and I went out for ride. We checked out a potential housing "option" which turned out not to be an option. Suddenly, I felt like everything was caving in on me. Here's almost everything going on in my brain during my mini freak out session:

• I don't understand our health care system.
• I feel ill-equipped to care for my parents.
• I want my house back.
• I'm in SUCH a pissy mood.
• How are we EVER going to do this?
• Are we doing anything right?
• How does everybody else do this?
• What are we going to do about ________ (fill in blank.)?

And then I lost it. I took it out on Hubby, who has been STELLAR during this entire process. But I completely lost it. I wanted to curl up in a ball and cry.  OK, I admit it, I did cry.

Then I realized that dinner wasn't going to make itself, so I went to the grocery store, bought some food and made a kick-ass dinner. (I made fish, people...no, not fish people.)

And then I felt better. Absolutely nothing was figured out, but I was done with my pity party.

Sometime in the middle of my freakout, Dad and I had a confrontation. I realized that he had been sitting in the library, doing NOTHING, for about 8 hours and this pissed me off. I told him that he needed to go do his PT exercises. He said he did them already. I told him he needed to do them twice a day. He balked. I didn't budge. I told him that he'd lose use of his legs if he didn't exercise a little.

We both dug our heels in and then I did the meanest thing ever to him: I TURNED OFF THE TV. He literally cried out in exasperation. He shuffled out with Mom to do the exercises and then Mom came out and explained to hubby that if we turn off the TV, they don't know how to turn it back on. Hubby was more sensitive to their "plight." I told him that I was happy to turn it back on after the exercises...which I did...

...and then Dad went to bed AT 7PM.

*Cut to me burying my face in my hands.

But this brings up something that I'm REALLY worried about: Dad isn't moving or interacting nearly enough.  He's bored and so he sleeps...ALL DAY LONG.

As tough as I can be on him, I feel powerless to really make him do the things he NEEDS to do.

And now, just saying that, I want to start another pity party.

Balloons anyone?

Losing the filter

If you spend any time around old people, you notice that they have no filter. You know, that impulse control mechanism that makes you stop saying things out loud that might be rude.

Last night, we took Mom and Dad out for dinner. This is no small effort because it requires a long, pre-trip discussion of which restaurants have stairs vs. ramps and which ones allow us to park close to the door. (Yes, we've applied for the handicapped tag. No, we haven't gotten one yet.)

So we settled on a local sports bar that serves a decent fish fry. I'm getting completely used to the hubub surrounding our entrance to a restaurant. Some of us hold the door, some of us lead the way, some of us find places to park the walker. This is all a way of saying: It's pretty damn obvious that WE HAVE AN OLD PERSON IN OUR GROUP.

After about 10 minutes, we finally settled at a comfortable table and could relax.

Approximately mid-way through our meal, a party of two arrived in the bar/restaurant. It was two women, one of which was quite old and had her own walker. She also had a severe case of osteoporosis. (Note to self: DRINK MILK...LOTS OF MILK.) She was trying to get past our table and her companion was helping her navigate with the walker. She walked in a very hunched over manner, poor thing.

So, we're sitting there, in kind of a small room in which only 3 tables are filled and it's not very loud. (This is meant to explain that anything said at any table could be heard by any other table.)

Suddenly, out of nowhere, Dad says: "There's a woman over there without any head."

*Cut to me, burying my face in my hands.*

Seriously, Dad? You, who can barely shuffle anywhere are going to make fun of another senior citizen?! I call you on a flagrant foul against your own generation. Stop throwing boulders in that glass house you have.

I should also mention just moments earlier Dad whispers to the waitress: "Do you have a cushion I can sit on?" (Because his butt hurts...all the time...BECAUSE HE SITS ON HIS ASS ALL DAY LONG.)

Must...not...be...angry....

Mother Teresa does not live here

Yesterday, I felt sad. No special reason. Nothing bad happened. Nobody did anything in particular. I just felt sad. There will be days like that and I'm trying to learn to accept them. I'm still searching for things to look forward to. (Yes, I know, dangling preposition. Go ahead, shoot me, Grammar Police.) Right now, here's the list: Coffee, chocolate, tennis and working out. That's all I've got.


Look, I wouldn't be honest if I didn't say I wish things were different. My old, amazing life, as it was, is gone. I'd change it if I could. But that's not to be and so you have our full house with old people and perhaps young people who may not be happy with the current situation (that might be the real issue here) and all of us doing our best to make it all work.


I'm just a ridiculous people-pleaser who pleases nobody...or at least that's what it feels like. If people are happy, then everything feels better. But lately, nobody seems happy, least of all, me. And it's at times like these that I poke the proverbial sleeping bear. I walk around asking people if they're mad/sad/bored/itchy/unhappy. What a ridiculous waste of time. Why do I go around looking for trouble? I can't help myself.


We'd all be better off if I just minded my own business and stopped worrying about everyone else. Therein lies the problem: Everybody's business IS now my business. I'm a caretaker. How do you stop caring? And is it caring if you sometimes have the overwhelming urge to throw people off your deck? Yes, I admit it. I get angry about all of this. I'm human and very flawed. I get mad at people for situations that are NOT THEIR FAULT.

I think if Mom and Dad were in a better, younger place in their life, they'd be pissed off too. They'd MUCH rather be in their own house, their own place, with their own snacks and nobody questioning every freaking thing they do.

Me: Dad, why are you putting eye drops in the refrigerator?
Dad: Because they don't go in my eyes well and I think that will help.

Cut to me burying my face in my hands.

What's difficult is not trying to fix things. They say insanity is doing the same thing over and over expecting a different result. I keep having the insane urge to do something...anything, that will make everything better...even though "better" is a relative term.

It's clear that I have no idea what I'm doing. Maybe that's best or maybe that will be my defense the next time I lose it and start screaming.


No, Mother Teresa does not live here.