Thursday, May 27, 2010

Vacation from Dad

Most days I do have something better to do than to take 2 hours out of my day to hang out with Dad. I'm annoyed. It's just how I feel today. I spent half my day in the car and if I didn't have to go to Whittier, I could have gotten a lot more done (whiny, I know). I am leaving for vacation on Saturday which means two things...
1. I have a million things to do before then.
2. I had to visit Dad today cause neither of us can go the next 4 days.

As I said before, he tries to run away when he hasn't seen his daughters for a few days. The deal was that they won't raise his monthly rate if Megan and I visit a lot more. I know this is temporary and, for the moment, better than going through the moving process again. On the other hand, it's frustrating. Rearranging schedules just to go visit him and reassure him that we haven't forgotten him.
Moving my Dad closer to us was supposed to be great because then we could visit him once a week (where in Fallbrook is was once a month if that). We definitely didn't expect 4 times a week.
All I can say is that I've deserved my Vacation! See you next week Dad.

Wednesday, May 26, 2010

Listening

I sit here enjoying my glass of wine and think about our visit with my Dad today. It is always easier when Megan is with me. We notice the same things. Particularly a shift in his mood.

Dad got quiet when we brought him back home after a picnic in the park with ducks. He was upset and he always wants to walk us out when we say we have to leave. We don't want him near the exits, so we always try to divert him. Today he said, "I want to talk to you."

We decide to take him seriously and listen for once. He talks about his frustrations and how he wants a job so badly. We listen and agree with him and it makes him happy. I think we're so used to telling him what to do or trying to make a joke to cheer him up that we forget to just listen. (We can't fix anything that he wants us to fix of course, but he is satisfied that we're listening). That's all he wanted today.

Megan read a pamphlet about how to talk to people with Alzheimer's. (I read it too and forgot what it said... I only remember thinking that we already do most of the things it was telling us to do -- oops, I should have paid more attention). One of the things was to listen and agree. It helps make him feel less powerless.

He was much happier after that and he felt OK that we were leaving. He even remembered that we were going to Arizona this weekend to see Papa. Clear as day he said, "Tell all those people over there Hi. And tell Papa I am sorry about... (and he went on)" OMG, he remembered that Nana died!!!
And he was so sincere. And I felt like we had this moment with Dad today where he understood our sadness about Nana. And HE was actually sad about Nana. It was a moment where I felt like I had a Dad. A Dad who would console his daughters after they lost their Nana.

Tuesday, May 25, 2010

A Good Day



Today was my turn to visit Dad. I looked up something fun to do and found an arcarde nearby. That would be fun.

When I arrived they had all been gathered in the dining room of the Memory Care area. I put my face up against the glass and waited for him to spot me. Then, like a child being picked up from school by his mom, he smiled and giggled and immediately ditched the other people at his tabel to come see me... mumbling something like "That is my girl".

Usually in the car I put on his favorite jazz tunes and that transforms into something wonderful. Today, instead, we called my half sister, Kelly, who lives in Oregon. (We had already talked that morning and she is supposed to reinforce to Dad that he lives in a great place and that he shouldn't try to escape.) Dad tells her, "I almost forgot you." I am just happy that he genuinely does seem to know who she is today. Who knows how much longer he will remember her since they never see each other.

The good news is that today is a good day. I can tell already -- I won't have to calm him or answer difficult questions. He is pretty merry. We get to the arcade and it is closed -bummer- so we go over to Ruby's for lunch.

My childhood was spent in Fallbrook -- the avocado town -- so I ordered Dad a guacamole burger and he got really excited. Talking about avocados makes him happy because it is still familiar to him. All the while, Dad is cracking me up. He is so funny it hurts sometimes. Interestingly enough, growing up he had jokes that were dirty or slightly racist and we definitely did not find them funny. (He still makes dirty jokes).

The funny factor comes from the randomness of what he says or the moments of clarity that you don't expect or the old sayings that he makes up on the spot. And it makes him feel so good when he makes you laugh.

After laughing for a few minutes Dad asks, "So when am I gonna die?" Hmmmm. I told him that he is so healthy that he may live for 15 more years (and he will continue to be a pain in the butt). :) He said that someone told him he was dying. Someone probably did, I don't dispute that. He lives with 20 other residents who have Dementia or Alzheimer's -- so there's no question that one of his crazier house-mates probably told him that. I don't know how he drank so much beer his whole life and has turned out so healthy. When I pointed that out to him he said, "I quit that stuff." Right.

Dad loves women. And at Ruby's the waitresses wear those pink and white dresses. After one of them walks by he says with a devilish smile, "Wait, get back here. I wanna talk to you." Good thing she didn't hear him but I am dying laughing because he has his messy guacamole burger that is the size of his head in one hand while simultaneously trying to flirt with the waitress. Who says this guy doesn't have it together?!

When we run out of things to talk about I start pointing out interesting objects around the diner like you would do for a child. Anything to keep him from dwelling on the fact that the place he lives in "locks him up with old people who steal from me". (In his own words). I want to tell him that he takes things that don't belong to him as well, but I refrain. In fact, he is wearing a shirt today that definitely belongs to his roommate Chuck.

After commenting that the 'green burger' 'kicked his ass', we leave to run more errands. I clip his fingernails in the parking lot, he helps me pick out new pillows for my couch, and I take a picture of him wearing these $2.00 children's foam fish sunglasses. (He can't wait to go fishing again. I keep telling him -- Soon!! In June we'll go fishing!)

I take him back to his home -- the part we all dread the most because we never know how he will react. I make him wear his new fish glasses and that gives me a lot of attention which he really likes. Today is a smooth transition. I leave him with all the ladies playing BINGO, which he said he doesn't like playing.

I blow him a kiss and get out of there fast. I feel good. Like I said, today is a good day.
video

Alzheimer's is Expensive

11:00 May 19th 2010: The phone rang and it was Whittier Place. Dad had gotten out again. He didn't get far but they couldn't get him to go back inside. I was already planning to visit him that day, so I left quickly and called Megan to come as well.

We got him back inside and fed him lunch. He complains: I need a job. I don't want to garden because they already have a gardener. These people take my stuff. I have no money.

Later that day, the head of Generations Memory Care where my Dad lives called to say she needed one of us to be there with him through the night or she would have to implement 24-hour care. I freaked out! 24-hour care would cost $1700 more a month. Great. Are we going to have to move him again? And to a place that is dumpy so that he can afford it?

The next morning in a meeting with Whittier Place, I break down. We end up compromising. Megan and I are going to visit 4-5 days a week and they won't raise his rate. This is our last chance to make this place work and it will only take one bad day for my Dad to ruin it. Fingers are crossed!!

I can't help but wonder how people afford care for Alzheimer's patients. My Dad's monthly payment would have gone up to a total of $5000 if they implemented 24-hour care!!! Whittier Place is moderately priced, so some are more and some are less. There is no fixed price at these types of homes -- the cost can go up and down depending on the needs of the resident.

Has America forgotten these patients? The system definitely fails someone like my Dad who is only 70 years old and is so physically active that he jumped the fence when he ran away earlier that day. He doesn't feel like he belongs with people who are 10 or 15 years older than him and he also needs a lot of activity to keep him happy and preoccupied.

I am not saying that the staff doesn't deserve the money he pays them. Because they do deserve it. They are constantly dealing with the disease and they are bending over backwards to accommodate my Dad. He's really sweet when he wants to be. Pinching cheeks and all that.

But how do families afford to give their loved ones the quality of life that they deserve? That is a question that I can't answer and that will be haunting us for the next 10-15 years (God forbid 20) as we go through this struggle with my Dad.

The only thing I can hope for in the future is the possibility of a cure or something to slow down the disease. Stem Cell Research. It's too late for my Dad... but what about me and Megan?


A Very Brief History of Dad's 'Situation'


The first signs of dementia that my Mom, Megan, and I noticed in my Dad was when Wal-Mart told him to take some time off work for a little while. That was 5 years ago and he was 65 years old.

My parents are divorced and my sister, Megan, is 23 and I am 26. I am not going to bore you with the past history of our relationship with our Dad but it wasn't really a typical father-daughter relationship. As we got older, we didn't see him as often (both of us busy with high school, college, work etc), so we had no idea that he was showing signs of Dementia. We weren't surprised though because his mother had Alzheimers.

He lived in a mobile home park for seniors and did OK on his own for a while. We tried to visit but we didn't live close, so it wasn't very often. In April 2009, we hired a caregiver for him during the day and we knew financially that we couldn't do that for long and that he would need more extensive care.

We found a Board and Care in Huntington Beach for him. B & C's are homes that five or six people live in with 24 hour care. Unfortunately, the woman running the place rubbed my Dad the wrong way and on April 5th, 2010, he ran away in the rain -- he climbed out the window. He was soaking wet and was almost a mile from the home when I found him. He thought he was in Pasadena where he grew up. I was furious. He was smiling.

The three of us scrambled all week to find him a new place. We were naive and finally realized that he needed to be in a lock-down facility especially designed for Alzheimers and Dementia patients. We found an extremely nice place for the price in Whittier and moved him in. Two days later I went to visit him and he wasn't there -- he had run away again. This time the police were contacted. The Fire Department found him and he was taken to the hospital.

There he was sitting in the hospital bed with dried blood on his head (he had to get stitches) and wearing a shirt that said, "I'm too sexy for my hair that's how come it isn't there."

He went back to Whittier Place and has been there for six weeks now. He still tries to leave but the staff are amazing and really try to keep him busy. It's tough on all of us and every time I see Whittier's number pop up on my phone, I get nervous.

This blog will provide me a way to share this experience with people and to bring to light the issues surrounding this disease. And most of all, I want to share my memories and experiences that I am having with my sweet Dad. Some moments are so amazing and crazy that I can't not share.