The Fishing Trip

Today was the much anticipated fishing trip that Dad participates in every year (Dad has gone on 4 of them every summer for the past 12-15 years). There was no way he could have gone without Me or Megan there to help him, so that resulted in me being with Dad for 26 hours straight. (Megan was going to go next time but now we're pretty sure there won't be a next time.)

We started off watching the Laker's game on thursday. Wearing his 25 year old purple corduroy Laker's hat, he sat glued to the TV and was ecstatic. He stayed the night at my house since we had to get up so early the next morning. I never sleep well when he is here because I keep listening for him in the middle of the night and sure enough, at 4 am I heard him get up and I helped him get to the bathroom... he was extremely confused.

We drove down to Oceanside the next morning and it was great to see Dad in a familiar setting with people who are familiar to him. One of his best friends since Middle School, Mike O'Rourke, set the whole trip up and had a lot of his family with him. Dad was pinching the kids' cheeks and saying hi to everybody -- he was especially excited to see Captain Joe and the crew on the boat. Everyone accommodated Dad really well throughout the entire day, we both caught a good amount of fish, and the weather was great. (The picture above is with The Captain after Dad caught a Calico Bass.)

Ok, so the day doesn't sound completely disastrous but being with him for that long almost sent me over the edge. My frustration was probably greater than usual because this whole week has been bad for him and I was just tired and worn out from it. He can't do anything by himself anymore. I even have to make sure he is facing the toilet when he pees. Half way through the day, I realized that this fishing trip would be perfect if it were only half a day long -- and we still had four hours left. Dad was starting to get confused and began to retreat inside himself a little. I'm not going to give a play-by-play of the day (like I did to Megan and my Mom) but let me just say that it was like teaching a blind man to fish or better yet teaching someone to fish who doesn't understand English. He seems like he never sees what you are pointing at or what you are trying to hand him, but then I realized that he doesn't comprehend what it is that you are telling him. Think of how many things I probably asked him to do in the last 26 hours, "Take your fishing pole." "Let's sit down." "Look at that Halibut." Each simple task was overwhelming and confusing to him. He usually just stands there with a blank look on his face.

Dad was especially confused about casting out his line and we did it for him most of the day. He did it really well a couple of times, but then one time, instead of casting the line into the water, he cast it across the boat the opposite way! Luckily we didn't slap anyone in the head with the anchovy or hook anyone who was standing over there, but that's when I realized he was kind of dangerous.

I kept digging deeper and deeper to find the patience I needed and I ran out a couple of times. By the end of the day there was none left. I felt hopeless and annoyed, afraid of snapping at him, so I just tried to keep my mouth shut. There have been so many bad days lately that I have almost given up on Dad having a good day again, but I have to remember that even though Megan and I are suffering through his behavior, Dad is suffering too.

In Dad's mind, he if fine. He wants a job and can't understand why he is locked up in a place with people so much older than him. He begs and pleads with us to get him out of there. It's heart-breaking. Reality is that he needs every bit of help. He needs locked exits. Whittier place is so nice and he is lucky to be there. They have live entertainment almost every week, they take bus rides around town, they play bowling in the middle of the hallways, and he can garden all he wants!

The staff at Whittier or any place with a Dementia ward are amazing. I can't give enough praise for the hard work they do for people like my Dad. I only spent 26 hours with him, but they do this every day. Even more difficult is someone like my Mom's next door neighbor who is taking care of his wife 24/7 who has severe Alzheimer's. He will call my Mom and say, "Paula, I need you for moral support. Now." And she will go running over there. The frustration comes fast and hard. It's a tough thing to balance. People say this disease is awful and we all know it, but when you are going through it with a family member, it's much more awful than you ever thought it would be.

The only "good" thing that I realized today is that Dad does seem to be getting worse. His coordination is very fragile and he doesn't move as fast as he used to. I'm hoping this will start inhibiting his escapes and that we will start getting less resistance from him.

Then again, when I took him back to Whittier place after fishing, he started mumbling, "Got to get the hell out of this place and get me a job" and "I'm locked up in the place again". Great. The day isn't over yet. A new resident started shrieking down the hall about needing help, and Dad yelled at a lady who was lurking in her doorway. He was very upset to be back there. I was not surprised when Whittier called me on my way home to say that Dad was anxious. He told me, "just wanted to tell you that I am getting out of here". (I even thought, "fine, go, I don't care"). With absolutely no patience left, I could barely think of anything to say. I got him to agree to wait until the next morning and we'll talk about it then.

I am Grateful

I've gotten a call every day this week from Whittier because Dad is trying to jump the fence. I cringe when I hear the phone ring. He is not having a great week.

So, as soon as my Yoga teacher had us sit still and cross-legged with our eyes closed today, I could feel emotion well up inside me. That's been happening a lot lately in Yoga, although less and less as time goes on. The minute I sit still and look inside myself I start to feel the sadness from losing Nana and the frustration from Dad's situation. My teacher told us to have compassion in our hearts and asked what and who we were grateful for. Then with my eyes still closed, I smiled. I am very Grateful.

I am grateful to have Blake, Megan and my Mom. I am grateful to still have Papa. I am grateful to have so many family and friends who are so supportive. I don't write this blog for sympathy. I write it for therapy and for the wonderful support that has poured from our family and friends. I am grateful for your support.

I also write this blog for the few friends and family that my Dad has left. Unfortunately he never really nurtured his relationships as the years went by. He had a dysfunctional family growing up and had a difficult time developing strong family ties. He was separated from family members for years. Grudges were held and many family members didn't talk for years and some still don't talk. I haven't seen my half brother in 20 years and have NEVER met my Dad's brother. I am not pointing blame at anyone... they are all at fault, including my Dad... but so many years have gone by... does it really matter anymore? What I find sad is that these relationships can never really be mended because of my Dad's disease. Even the relationships that never turned sour just became distant because unfortunately my Dad was not good at picking up the phone.

If my Dad hadn't turned things around the last 12 years, he wouldn't have much of a relationship with Me and Megan either. I always said that my parents divorce was the best thing that could have happened for our relationship with our Dad. As he got older and less angry he started to soften and reach out to people. I spent most of my childhood afraid of him, but by the time I was 15 or 16, we became friends. I say friend because he wasn't really an authoritative father figure. He kind of lost that right, but we had a relationship and that's what mattered. Forgiveness is a powerful thing. He was sweet and stubborn and a part of our lives. Now it seems he is a bit too much a part of our lives, but it's ok.

The reason I bring all this up is because this past week my Dad has been living in his memories of 20 or even 40 years ago. He keeps talking about all "his people" in Pasadena. There's really no one there anymore. He feels such a closeness to them even though he hasn't talked to many of them in a long time. Most people have moved on, or passed away. It's kind of sad and he wouldn't understand, so I can't really explain it to him.

There are people who are following this blog that have meant a lot to my Dad in his life. My sister Kelly in Oregon, cousin Darlene in Oregon, my Aunt Tammy in Northern California, Uncle Ron and Aunt Linda in Oxnard, Cousin Joyce in Georgia, and the Henning/Howell/Violi family from our Fallbrook days and so many more. I pass on your messages to him and sometimes he understands. He has a lot of people who love him and I will keep reminding him. Feel free to send him cards or pictures. He can get mail. Here is the link to his place...

http://www.whittierplaceseniorliving.com/

Good vs. Bad

Today was one of Dad's worse days in a long time. He tried to climb the fence today and when I talked to him on the phone, he hung up on me twice. So I went to Whittier. An hour later I walked away feeling bummed out. He's upset and confused and kind of seems depressed... I'll get into more of it later. (after I go to the gym for the second time today cause this situation stresses me out)!

Dad's token 'bad day' phrases:
"I have no money"
"They steal all my things"
"I want to see my people"
"I'll walk there"

He thinks he can walk to Pasadena or the ocean when in fact we all know it is really far...
Anyway, I attached two videos... one is of him on a good day with Megan and the other one is from today.

Denial

I sit here with tear-stained cheeks cradling a glass of wine. (You're so dramatic Kristen, you say). I know, but I speak the truth.

There comes a time when you have to face denial. Especially with Alzheimer's and Dementia. Denial comes easily with this disease. "Dad's too young to be losing his memory". "Dad is fine to live alone." "Dad doesn't have to be in a lock-up facility... he can still clean his dentures." No, he can't. Face it.

There's also the financial denial. I have to give us a little credit on this one. We didn't think it would take this long to sell his mobile home. We also didn't know he would lose so much money on it or that his Morgan Stanley investments would have plummeted so much. Someone like my husband Blake who is getting his masters in business and finance would know this, but I do not. The minute I hear numbers my mind shuts down. Yeah, I took Honors Math all through High School, but I was tutored through the entire thing. It was torture.

We had been scrambling for a place to put Dad when my Mom found Whittier Place Senior Living. Dad had been living between me, Megan, and my Mom for about a week after running away from the first place we put him. Whittier is so nice and actually very affordable when you compare it to other facilities. What took us over our budget is all the extra 'stuff' that they charge you for. $100/month to have someone help them with their dentures or $120/month for the patient to get 5 showers a week... the list goes on. (Even with all the added expenses, the place is still pretty cheap). We knew that we were above his budget but at that point we were desperate to get him in a secure place. The plan was to let him live there for the next few years while he is still young and active and then when he gets worse, we can move him to a different place.

Well, Dad's money is running out soon and he's not selling the mobile home fast enough. I'm freaking out. When we're already spending so much time visiting and worrying about rashes or trying to stop him from running away, how can we think about one more thing? Well, I'm going to stop crying and try.

We're going to meet with a lawyer and hopefully get more information about Medical. And we have some legal and financial complications (that I won't go into) and I can't even begin to understand all of it. Luckily Megan and I have my Mom who looks up EVERYTHING on the internet in record speed and is extremely quick in learning about all these government programs. We also have Blake. He is the more fiscal conservative among us and a great forecaster when it comes to finance. I'm hoping between the two of them and Dad's lame Power of Attorney (Me), we can figure it all out.

What makes the possibility of moving Dad worse? I feel like in the past week or two, I've started to notice a small change in my Dad. I think he is starting to consider Whittier Place as his home.