Changing the Cause of Death...

The cause of death on Dad's death certificate is still bothering me.  It's actually doing more than that... it brings me to tears of frustration and hurt every time I think about it.  I really thought I could let it go, but it crushes me to know that he suffered from this terrible disease for over 9 years and he is technically not a statistic.  All the hard work we do to make a difference and to find an eventual end to this disease is all because of him and for the millions of families dealing with this disease every day.
When I was in D.C., a friend of mine and fellow Alzheimer's Advocate shared with me that she is fighting to have her Mother's cause of death changed.  I had already come to tears that day thinking about it and felt that it was consuming me because there was nothing I could do.  She has changed my thinking and has offered to help me.  
She sent so many resources to her Mother's Doctor including a link to death statistical data tables from California Dept of Public Health proving that Alzheimer's Disease IS a cause of death and an article similar to the one I shared a few blog posts ago that stated Alzheimer's kills more people than previously thought because the disease is under-reported as cause of death.
I feel like I need to prepare for my day in court in order to convince this doctor, who doesn't even know me or my Dad, to change the cause of death.  

First on my list was to call the Mortuary because they will need to be involved at some point.  The woman was extremely helpful and didn't seem to think I would get much push-back from the Doctor (it sounds like people request changes on the death certificates often and that this specific doctor will usually amend it).  She actually says that many people request that Dementia be REMOVED from the cause of death!  I can't believe that.  The stigma of Alzheimer's still exists.  Birth and Death records are pretty powerful, I guess.  They become History.  They are always the first thing you find when you dig into your ancestry. 

Our plan is this:  She put in the request today and will hear back by Monday or Tuesday, but will call me Tuesday no matter what.  Could it really be this simple?  I don't know....

If that doesn't work, I found out that the Doctor's office is 1/4 mile from my house, so I can always stage a sit-in.  Just kidding... sort of.  Let me just put it this way... I plan to be persistent on the matter.

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/

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.