I believe there is a fine line between healing after the loss of a loved one, but also not forgetting the struggle and pain that your loved one endured. I never want to forget what my Dad (and my family) went through during the last 4 years of his life. Because to me, forgetting is the equivalent of thinking that it's not important anymore. But, on the other hand, it's also imperative and healthy to move on with life and let go of the pain in your heart.
Most of the time I don't feel the pain anymore. Yesterday I did. There's an article circulating on every social media website, People.com, CNN.com... you name it, the article is there. It's about a 29 year old woman who is choosing to die on her own terms. She has terminal, aggressive brain cancer. (I'm not doing her story justice, you must read it). She moved to Oregon where she was able to have a prescription for a drug that will help her die when the time comes. She talks about the importance of quality of life, living life, not being in pain, talking with loved ones and spending time with them. She does not have Alzheimer's but the nature of her disease is similar because her brain will go first and then her body will hang on a little longer. See the parallels to my Dad's story?
This is obviously a sensitive subject and I am not here to talk about 'assisted suicide'. I'm simply pointing out her story because my Dad had a very poor quality of life for the last 6 months before he died. It hit me really hard today after reading her article. I stood in the shower and really cried. I hate Alzheimer's disease and every thing that it did to my Dad. He had Scabies more times than we can count, he had a broken nose from trying to run away from a care-giver which resulted in a face-on collision with a door, he had MRSA - that nasty staph infection that had to be lanced open by the doctor and drained, he had a hernia that we could not treat because how do you perform surgery on an Alzheimer's patient?, he was on strong anti-psychotic medications that eventually resulted in his loss of mobility, appetite, and sped up his impending death. I was begging the heavens near the end to please let him die. He had almost no dignity left and no quality of life. I now have to live with the memory of how he lived, where he lived, and how he looked toward the end of his life. He didn't get the chance to say goodbye because he could not talk and he couldn't focus on us when we visited. I know he would have wanted to die a different death.
So, I choose not to forget because it would kill me if
someone else I loved had to go through what my Dad went through. The
future is unknown, but Alzheimer's statistics are not on our side, so
it's likely I will have a run-in with the disease again.
I try to believe that our story must be more severe and more heart-breaking than many (not all) of the Alzheimer's stories out there because there are over 5 million Americans living with Alzheimer's disease, and if they all had stories like ours, then they would all be standing on rooftops and yelling for something to be done about this disease. Right? But, they aren't.
I just wish more people cared about Alzheimer's.
The Long Beach Alzheimer's Walk is less than two weeks away. We are fund-raising and spreading awareness as we always do. If we reach our team goal of $7000 for this walk, then we will have raised a total of $25,000 in the past 5 years for Alzheimer's. That's an accomplishment. We're determined to walk to change the future.
A diary-style account of Dad's Alzheimer's disease and how we (Kristen and Megan) deal with the challenges of this disease. Dad is hilarious, heart-wrenching, and naked one too many times, and although the disease is confusing and frustrating, we are able to find that humor and love still prevail.
Thursday, October 9, 2014
Wednesday, June 18, 2014
Persistence Pervails!
I had persistently been visiting Dad's Doctor's office over the past two months hoping to speak with the Doctor about changing the cause of death on Dad's death certificate. (Luckily for me, the office is within walking distance to my house.) The Doctor finally called me about a month ago and I explained briefly over the phone what I was hoping for. His answer was, "Well, I can't do that. How do I know he died from Alzheimer's?" And I responded, "I understand. That is why I have compiled a folder of information that includes some medical records and a recent CT scan..." He gave me the go-ahead to drop it off at his office.
Weeks went by and every time I stopped by, the office manager would shake her head. The Doctor hadn't looked at the information yet. In the meantime, I emailed the administrator, who happens to be his brother, urging him to put pressure on the Dr. to consider my request. I never got a response.
A couple weeks went by, we were busy, and I kept forgetting to check in with the office. Finally I went by on Friday, and there was good news! He approved the change, but forgot to sign the actual paper so that it could be faxed to the mortuary. We were in the home stretch, but I didn't want to celebrate yet. Then, yesterday I got the call that everything was signed and that the fax was being sent. It's sort of anti-climactic, but I know it was the right thing to do for my Dad and for the cause.
I took a picture of the Doctor's corrections....
It will now say that he died of Cardiopulmonary Arrest but right under that (the underlying cause) will be Advanced Alzheimer's Dementia. That should make him a statistic.
Weeks went by and every time I stopped by, the office manager would shake her head. The Doctor hadn't looked at the information yet. In the meantime, I emailed the administrator, who happens to be his brother, urging him to put pressure on the Dr. to consider my request. I never got a response.
A couple weeks went by, we were busy, and I kept forgetting to check in with the office. Finally I went by on Friday, and there was good news! He approved the change, but forgot to sign the actual paper so that it could be faxed to the mortuary. We were in the home stretch, but I didn't want to celebrate yet. Then, yesterday I got the call that everything was signed and that the fax was being sent. It's sort of anti-climactic, but I know it was the right thing to do for my Dad and for the cause.
I took a picture of the Doctor's corrections....
It will now say that he died of Cardiopulmonary Arrest but right under that (the underlying cause) will be Advanced Alzheimer's Dementia. That should make him a statistic.
Wednesday, April 30, 2014
First Request - Denied
The Mortuary called me last Tuesday morning, as planned, with the news that the Doctor refused their request to have the cause of death changed. Her words were, "You were right. He didn't want to change the cause of death." She was surprised and she said he gave no reason.
Unfortunately because she gave me a glimmer of hope, I became quite upset that day. I was fired up and so many thoughts were swirling in my brain. It took some princess music and hugs with Emry to finally calm me down. The next day, I drove to the West Los Angeles VA Hospital to request a copy of my Dad's medical records. Those will take about 10 business days to arrive in the mail. Today is day 6. I sat down and wrote my cover letter for the Doctor because I had to get all the information out of my brain. I was going crazy. My plan is to turn in that letter with a "packet of proof" to the Doctor so that he can be fully informed. Hopefully I will be able to meet with him or speak with him on the phone.
In the meantime, I went through all of my Dad's care plans and doctor's assessments for all the homes he lived in and all the hospitals he stayed at. I currently have 3 different Doctors from 3 different facilities that have stated his diagnoses as Alzheimer's, Dementia, or Dementia Psychosis. These papers do not prove that he died from Alzheimer's, but they do prove that he was on powerful drugs for years because of Alzheimer's. Those drugs combined with the disease are what truly killed my Dad.
I am hoping to find something from the Palliative Care Team at the VA hospital as well. I believe a patient can only be put on Palliative Care if they have a terminal disease. I think that would be very convincing.
While all this was happening, I planted a small garden in the back yard. I am scared to grow vegetables and especially herbs because they always die. I do not have the passion my Dad had for the earth. He was out there every day tending to his garden. So, I started small... 2 Tomato Plants, Basil, Squash, and Pumpkin. Emry says to me often, "Look at my garden, Mama." Maybe she will have Dad's green thumb.
Unfortunately because she gave me a glimmer of hope, I became quite upset that day. I was fired up and so many thoughts were swirling in my brain. It took some princess music and hugs with Emry to finally calm me down. The next day, I drove to the West Los Angeles VA Hospital to request a copy of my Dad's medical records. Those will take about 10 business days to arrive in the mail. Today is day 6. I sat down and wrote my cover letter for the Doctor because I had to get all the information out of my brain. I was going crazy. My plan is to turn in that letter with a "packet of proof" to the Doctor so that he can be fully informed. Hopefully I will be able to meet with him or speak with him on the phone.
In the meantime, I went through all of my Dad's care plans and doctor's assessments for all the homes he lived in and all the hospitals he stayed at. I currently have 3 different Doctors from 3 different facilities that have stated his diagnoses as Alzheimer's, Dementia, or Dementia Psychosis. These papers do not prove that he died from Alzheimer's, but they do prove that he was on powerful drugs for years because of Alzheimer's. Those drugs combined with the disease are what truly killed my Dad.
I am hoping to find something from the Palliative Care Team at the VA hospital as well. I believe a patient can only be put on Palliative Care if they have a terminal disease. I think that would be very convincing.
While all this was happening, I planted a small garden in the back yard. I am scared to grow vegetables and especially herbs because they always die. I do not have the passion my Dad had for the earth. He was out there every day tending to his garden. So, I started small... 2 Tomato Plants, Basil, Squash, and Pumpkin. Emry says to me often, "Look at my garden, Mama." Maybe she will have Dad's green thumb.
Friday, April 18, 2014
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.
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.
Sunday, April 13, 2014
Alzheimer's Association Advocacy Forum in D.C.
My Trip to D.C. was everything I hoped it would be and more. The first two days were spent 'training' for our final day on Capitol Hill. There was an Advocate or Ambassador from all 50 states and in the case of more populated ones like California, there were even more. I think our chapter (greater LA area) brought 23 people . Total there were almost 1000 people there. Two women in our group just lost their mother to the disease and then there were others who were personally battling the disease themselves. We met a Father, age 51, who was diagnosed at age 47 with early on-set Alzheimer's. His 18 year-old son and wife were with him and this was their 3rd year participating in the Forum.
The emphasis this year was how we desperately need more support and funding from the Government to combat this disease. Our collateral very clearly points out how Alzheimer's is helping to bankrupt our country -- the graphs and charts say it all. We presented this collateral to our Congressman or Staff members, walked them through the handout, and then someone would share a personal story (I shared my story in all three meetings because it was the most powerful out of our group) and then we would ASK for what we need. My spiel went something like this:
If there is one thing that you take away from this meeting today it's this: Alzheimer's is the most expensive disease in the country with costs set to skyrocket in the years ahead. Most of those costs are from Medicare and Medicaid. 1 in every 5 Medicare dollars is spent on someone with Alzheimer's.
This year the disease will cost us $214 Billion with $150 Billion coming from Medicare and Medicaid. Only 0.25% (a quarter of 1%) is currently committed to research. That 0.25% is the ONLY way to reduce the costs.
The Director of the National Institute of Health, Dr. Francis Collins, testified before the Senate Appropriations Committee in February and said "We are not, at the moment, limited by ideas. We are not limited by scientific opportunities. We are not limited by talent. We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take."
The good news is we know that smart government investments in research do work, for example, Cancer, HIV/AIDS, Cardiovascular... We need that kind of investment to bring the costs of this disease down and to find a way to prevent, slow and cure Alzheimer's.
(I then shared my story, especially how stressful the financial impact was on our family and then brought it back around to our ASK)
What we are asking for today is $200 million in funding for Alzheimer's research in Fiscal Year 2015. Will you sign and send a letter to the Appropriations Committee supporting this? (we got a yes in two meetings and a probably in the third meeting).
Our second ask is this: in 2010 the National Alzheimer's Project Act (NAPA) was passed and in that Act there are timelines and milestones of how we are going to beat this disease with a goal of effectively treating and preventing Alzheimer's by 2025. HOWEVER, the plan does not include a projection of the level of funding necessary to reach this goal. Last week, the Alzheimer's Accountability Act was introduced which would require the scientists at the National Institute of Health to submit an annual Alzheimer's research budget proposal directly to Congress and the President. This will inform Congress of what is needed to reach our goal of 2025 so that they can make an educated decision when deciding how much funding goes toward Alzheimer's research each year. Will you be a Co-Sponsor of this bill? (again we got a yes in two meetings and a probably in our third meeting.)
It sounds like a lot of overwhelming information but we were trained so well and the collateral was put together so precisely. Our presentations were very clear and we didn't get a lot of clarifying questions.
The next 24 hours were spent exploring D.C. The city is so clean, so safe, and so inspiring. I can't wait to go back with Blake and Emry some day.
The emphasis this year was how we desperately need more support and funding from the Government to combat this disease. Our collateral very clearly points out how Alzheimer's is helping to bankrupt our country -- the graphs and charts say it all. We presented this collateral to our Congressman or Staff members, walked them through the handout, and then someone would share a personal story (I shared my story in all three meetings because it was the most powerful out of our group) and then we would ASK for what we need. My spiel went something like this:
If there is one thing that you take away from this meeting today it's this: Alzheimer's is the most expensive disease in the country with costs set to skyrocket in the years ahead. Most of those costs are from Medicare and Medicaid. 1 in every 5 Medicare dollars is spent on someone with Alzheimer's.
This year the disease will cost us $214 Billion with $150 Billion coming from Medicare and Medicaid. Only 0.25% (a quarter of 1%) is currently committed to research. That 0.25% is the ONLY way to reduce the costs.
The Director of the National Institute of Health, Dr. Francis Collins, testified before the Senate Appropriations Committee in February and said "We are not, at the moment, limited by ideas. We are not limited by scientific opportunities. We are not limited by talent. We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take."
The good news is we know that smart government investments in research do work, for example, Cancer, HIV/AIDS, Cardiovascular... We need that kind of investment to bring the costs of this disease down and to find a way to prevent, slow and cure Alzheimer's.
(I then shared my story, especially how stressful the financial impact was on our family and then brought it back around to our ASK)
What we are asking for today is $200 million in funding for Alzheimer's research in Fiscal Year 2015. Will you sign and send a letter to the Appropriations Committee supporting this? (we got a yes in two meetings and a probably in the third meeting).
Our second ask is this: in 2010 the National Alzheimer's Project Act (NAPA) was passed and in that Act there are timelines and milestones of how we are going to beat this disease with a goal of effectively treating and preventing Alzheimer's by 2025. HOWEVER, the plan does not include a projection of the level of funding necessary to reach this goal. Last week, the Alzheimer's Accountability Act was introduced which would require the scientists at the National Institute of Health to submit an annual Alzheimer's research budget proposal directly to Congress and the President. This will inform Congress of what is needed to reach our goal of 2025 so that they can make an educated decision when deciding how much funding goes toward Alzheimer's research each year. Will you be a Co-Sponsor of this bill? (again we got a yes in two meetings and a probably in our third meeting.)
It sounds like a lot of overwhelming information but we were trained so well and the collateral was put together so precisely. Our presentations were very clear and we didn't get a lot of clarifying questions.
The next 24 hours were spent exploring D.C. The city is so clean, so safe, and so inspiring. I can't wait to go back with Blake and Emry some day.
Wednesday, March 19, 2014
Dad is not an official statistic!
Shortly after Dad's death (like a day after), I already began wondering what his death certificate would say. I guess you could say I became slightly obsessed and curious. It's very important that Dad becomes a statistic of this horrible disease. The mortuary guessed it would say Dementia of some sort.....
Here is what it says:
Cause of Death: Cardiopulmonary Arrest (immediate cause)
Then other "conditions leading to cause" are listed as: Probable Myocardial Infarction & Coronary Artery Disease
Then listed below under "other significant conditions contributing to death but not resulting in the underlying cause": Advanced Dementia; Hypertension.
I am insulted and incensed. This doctor did not know my Dad but shouldn't his files have said something?! Any and all of Dad's health problems are from Alzheimer's (or dementia). He did have high blood pressure, but that's it. Those heart issues, the fact that he was in a skilled nursing facility, his weight loss... all of it stems from Alzheimer's. I believe that my Dad would have lived a long time if he did not have that disease. He was physically very healthy.
So, when an article came out in the Washington Post two weeks ago stating that a new study ranks Alzheimer's as the 3rd leading cause of death after heart disease and cancer because of misleading death records, I believe it. The article states that "death certificates for many with Alzheimer’s often list a more immediate reason for death, leading to a severe under-reporting of the disease as an underlying cause." Click Here to read the entire article. It's very enlightening and shocking.
I am still so mad about his death certificate. I'm trying to let it go, but if I could get it changed, I would. It frustrates me that Dad suffered so long from that disease but it's not going on record as the one and only thing that killed him.
Here is what it says:
Cause of Death: Cardiopulmonary Arrest (immediate cause)
Then other "conditions leading to cause" are listed as: Probable Myocardial Infarction & Coronary Artery Disease
Then listed below under "other significant conditions contributing to death but not resulting in the underlying cause": Advanced Dementia; Hypertension.
I am insulted and incensed. This doctor did not know my Dad but shouldn't his files have said something?! Any and all of Dad's health problems are from Alzheimer's (or dementia). He did have high blood pressure, but that's it. Those heart issues, the fact that he was in a skilled nursing facility, his weight loss... all of it stems from Alzheimer's. I believe that my Dad would have lived a long time if he did not have that disease. He was physically very healthy.
So, when an article came out in the Washington Post two weeks ago stating that a new study ranks Alzheimer's as the 3rd leading cause of death after heart disease and cancer because of misleading death records, I believe it. The article states that "death certificates for many with Alzheimer’s often list a more immediate reason for death, leading to a severe under-reporting of the disease as an underlying cause." Click Here to read the entire article. It's very enlightening and shocking.
I am still so mad about his death certificate. I'm trying to let it go, but if I could get it changed, I would. It frustrates me that Dad suffered so long from that disease but it's not going on record as the one and only thing that killed him.
2 Months Later
Frank Sinatra came onto my Pandora radio station the other day, and I realized it was the first time I had listened to "Fly Me to the Moon" since Dad died. It's been two months and hearing that song made me smile. (I have not listened to Ray Charles yet... )
The first month after Dad's death was a mixed bag of emotions. We were extremely sad for the first couple of weeks... thoughts and realizations kept creeping into my head. For example: I remember one night crying in the bathroom and telling Blake "We just went through 4 years of insanity... doctor's appointments, moving Dad from home to home, bills, dealing with the VA, medications... so much energy and time went into all of that... and for what? For him to just die?" Obviously since there is no cure to Alzheimer's, we knew that was the end result, but everything that we fought for was only going to be temporary in the end. The magnitude of this disease and what it means when a loved one is diagnosed is almost incomprehensible. We could have never imagined we would go through what we did with my Dad.
Then came the anger (which I know is normal). The feeling that I was robbed from the chance of having a meaningful adult relationship with my Dad. We were not that close growing up, but we were getting closer. Alzheimer's stole that from me. There was also anger because I felt that in some ways, I never knew who my Dad truly was. He was 44 years old when he had me... he had a whole life before me and I want to know who that man was. I saw the 'grumpy dad' or the 'silly dad' side growing up, but when his friends told stories about him at the memorial and about what a fun and energetic person he was to be around, I got jealous.
The anger is long gone now, and I feel at peace. Things feel normal around here, but I'm still fired up about fighting Alzheimer's. A friend of mine recently contacted me because her Grandmother is aggressive (like Dad) and the home that she is currently in cannot handle her. The Grandmother is on MediCal but does not qualify for skilled nursing. Did you know that there are no Assisted Living/Memory Care Facilities that will accept MediCal in Orange County (only skilled nursing)? It's pretty much like that throughout our state and probably many others. We knew that already, but being faced with that stark reality makes it really tough for a family to make any kind of decision. These are the cracks in the system. And families dealing with Alzheimer's disease fall through those cracks.
In a couple weeks, I will be in Washington D.C. attending the National Alzheimer's Advocacy Forum. I imagine the week will be very powerful, emotional, and uplifting for me. On my last day there, I will meet with my Representative in his D.C. office. It's going to be an amazing experience and I can't wait. Now I need to go buy a Power Suit! :)
Megan texted me saying that Dad was in her dream the other night and that they were trying to buy a Los Angeles Rams t-shirt. It's like he's sending her a wink and a smile from above.
The first month after Dad's death was a mixed bag of emotions. We were extremely sad for the first couple of weeks... thoughts and realizations kept creeping into my head. For example: I remember one night crying in the bathroom and telling Blake "We just went through 4 years of insanity... doctor's appointments, moving Dad from home to home, bills, dealing with the VA, medications... so much energy and time went into all of that... and for what? For him to just die?" Obviously since there is no cure to Alzheimer's, we knew that was the end result, but everything that we fought for was only going to be temporary in the end. The magnitude of this disease and what it means when a loved one is diagnosed is almost incomprehensible. We could have never imagined we would go through what we did with my Dad.
Then came the anger (which I know is normal). The feeling that I was robbed from the chance of having a meaningful adult relationship with my Dad. We were not that close growing up, but we were getting closer. Alzheimer's stole that from me. There was also anger because I felt that in some ways, I never knew who my Dad truly was. He was 44 years old when he had me... he had a whole life before me and I want to know who that man was. I saw the 'grumpy dad' or the 'silly dad' side growing up, but when his friends told stories about him at the memorial and about what a fun and energetic person he was to be around, I got jealous.
The anger is long gone now, and I feel at peace. Things feel normal around here, but I'm still fired up about fighting Alzheimer's. A friend of mine recently contacted me because her Grandmother is aggressive (like Dad) and the home that she is currently in cannot handle her. The Grandmother is on MediCal but does not qualify for skilled nursing. Did you know that there are no Assisted Living/Memory Care Facilities that will accept MediCal in Orange County (only skilled nursing)? It's pretty much like that throughout our state and probably many others. We knew that already, but being faced with that stark reality makes it really tough for a family to make any kind of decision. These are the cracks in the system. And families dealing with Alzheimer's disease fall through those cracks.
In a couple weeks, I will be in Washington D.C. attending the National Alzheimer's Advocacy Forum. I imagine the week will be very powerful, emotional, and uplifting for me. On my last day there, I will meet with my Representative in his D.C. office. It's going to be an amazing experience and I can't wait. Now I need to go buy a Power Suit! :)
Megan texted me saying that Dad was in her dream the other night and that they were trying to buy a Los Angeles Rams t-shirt. It's like he's sending her a wink and a smile from above.
Sunday, January 19, 2014
My Final Words to Dad
Yesterday was truly a special Day. We held Dad's Memorial in my backyard and we had over 40 people come to celebrate his life. It was perfect for Dad. We ordered beer Koozies and drank Coors Light while munching on Peanuts in the shell. Pictures and Flowers were everywhere, and we served BBQ Ribs, Fried Chicken, Coleslaw, Gravy and Mashed Potatoes, Cornbread and Bisquits, and BBQ beans. We were so touched to see everyone there. Alzheimer's is a very lonely disease since the nature of the disease makes the individual forget who everyone is and therefore lose contact with friends and family. We tried our hardest to stay in contact with people and this blog helped tremendously. So, I extend a huge thank you to everyone who attended and/or sent flowers. It meant so much to us. It was an amazing party for Dad.
Here are the words I shared at the Memorial:
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Here are the words I shared at the Memorial:
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When
I look back on Dad's life... it's interesting. Life handed Dad a lot of lemons. But he still managed to
make lemonade. He has four
children - I know we didn't turn out
too bad - we cared for him until the day he died. And I know my sister Kelly who lives in Oregon would love to
be here and is taking it pretty hard.
She sent beautiful flowers.
His lemonade also included numerous trips with friends and family to go
fishing, camping, hunting and so on. He was a hard worker and a loyal worker
throughout his years at UPS and Wal-Mart.
But many of Dad's life-lemons were very bitter... an unstable childhood, three
marriages, estrangement from close family members, back injuries that forced
him to stop working at a job he loved (UPS), and lastly the worst lemon of all,
Alzheimer's. He dealt with them in
many ways, but perhaps the best way he coped was through his playful
personality... and he had A LOT of personality. He had an awesome laugh and always wanted to make people
laugh. He was that way until the
end. When he was confused or
couldn't think of the correct word, he made a joke. He. Was. Funny!
And he never hesitated to tell a joke around us even if it was
inappropriate or dirty. All we could say was "Daaaaad!!!" and try to ignore it. As teenage girls, I think we had our fair share of
embarrassing moments around him.
But that was who he was. He
showed us his true colors always.
I will also add how he shamelessly flirted with women, waitresses, store
clerks, cashiers... right in front of us.
Sometimes he whistled across the parking lot or out the car window. Megan and I would start slouching in
our seats while rolling the window up as fast as we could. He loved women.
And it was embarrassing! He also had a
collection of shirts and hats that said various things like, "Who are all
these kids, and what do you they want from me." or "FBI, female body inspector" or "stop your
grinnin and drop your linen".
The
passion he had for the things he loved was and is so inspirational: Fishing, Music, Dancing, The Dodgers,
Cooking, Gardening, Hunting.
When
I think of Dad before Alzheimer's, so many things come to mind. I think a lot about the connection he
had with the earth around him. He
grew anything and everything... and then he cooked it too. We had chickens, pheasants, avocado
trees, citrus trees, an apple tree, bonzai trees and sago palms, a compost pile
and a HUGE garden with countless vegetables. What a beautiful way to grow up. He exposed us to all of that. He was "green" before "green" became
cool.
There
was always something cooking on the stove... Goulash, Beans, Soup (oh man, his
turkey and rice soup!), his home-made teriyaki sauce!, and we ate a lot of ribs
growing up as well... and that's one reason we're serving them today. And I could eat buckets of the fresh
fish that he would come home with after a fishing trip. I used to watch him filet the fish on a
wood block in the garage and Megan used to wrap them up in towels and carry them around like babydolls. Oh, and
the old refrigerator that he turned into a smoker... he smoked his own fish! It was amazing. Every Saturday morning we would have a
big breakfast of bacon, eggs, toast, and potatoes. The house smelled so good. Oh, and I can't forget french toast on Christmas morning. I only wish I would have retrieved some
of those recipes or special ingredients long ago when he was capable of passing them on to me.
I
have so many picture memories of my Dad in my head. I've been trying all week to retrieve them, but the last few
years seem to be getting in the way.
I can picture him in white short corduroy shorts, tube socks, no shirt,
a beer in hand tinkering in the backyard with the dodger game on the radio. Or sometimes he would be in the garage
with music playing. I also picture
him in his sweatpants, uggs, and flannel button-up reading the newspaper every
morning with a cup of coffee sitting next to him.
He
was at every activity that Megan and I were a part of growing up: Tennis, Basketball, Plays, Concerts,
Homecoming. He was always there
and always reliable and I know he was so proud of us. And as we got older, Dad grew sweeter... it's almost like he
knew he wouldn't have much longer with us.
Dad's
love of music and dancing stayed with him until the very end. It didn't matter what kind of day he
was having, the music would have the needed affect on him. It would calm him or uplift him. I was always surprised how the words to
the songs stayed with him even when he was barely talking. Those moments are my treasured moments
with Dad. I'll never be able to
listen to Frank Sinatra or Ray Charles without thinking of him. Especially the song "Georgia on My
Mind". The day before he
died, I held my phone up his ear and played it for him one last time. I think it made him feel less scared
and at home with himself.
Lastly
I would like to share how Dad enriched our lives. We had to step up to the plate and advocate for him. Megan and I became closer to Dad than
we had ever been and our love for each other grew stronger. As Alzheimer's descended into his life,
we kept laughing, we kept dancing, we kept singing. We cried too, but got back up. Dad gave us a purpose.
Megan and I will not stop fighting Alzheimer's until there's a
cure. No one deserves to endure
what Dad had to go through. And I
think that's what I'm grieving about more than anything, because honestly we
lost Dad a while ago, but watching him the past few years was really hard. He also showed us how important family
is. It's the most important. So, I'd like to say to Dad... You were so brave, you did the best you
could always, you were loved and cared for, you touched so many peoples' lives,
you could make anyone smile and laugh.... so now I ask that you watch over Megan
and me as we did for you. We love
you so much.
Pictures Last Forever
Gardening, The Dodgers, Dancing
Fishing
Bowling 1962, age 23
Being a goofball and cracking himself up along with everyone else
Monday, January 13, 2014
Peace at Last
Dad was released from his 9 year battle with Alzheimer's yesterday.
He had a fever a few days prior, so Windsor ordered more extensive labs. They wanted to send him to the hospital but unless it was going to make him more comfortable, I was against it. I didn't hear back about the Lab results until Saturday. It wasn't good. Dad's sodium levels were critically high and his vitals were dropping. His body was shutting down.
We called Megan and she booked flights right away. In the meantime, the nursing staff was such a calm presence. They made sure Dad was clean and they put lotion on his dry skin. When my Mom said her goodbyes and left, he was tucked in comfortably with oxygen in his nose. He looked serene.
A few hours later I was at LAX picking up Megan and her boyfriend, Erik -- we went straight to Windsor and even though it was after hours, we were able to see Dad.
He was breathing much harder and had a fever. BUT, he knew someone was there! And he knew someone was talking to him. His eyes moved in Megan's direction and then back to me. We reassured him "we're here Dad" "we love you" "hang in there". Megan hadn't seem him in this condition, so it was even more upsetting for her. Not easy for anyone, really.
The next morning, I woke a little before 7:00 with my mind focused on Dad. As I got out of bed ten minutes later, the phone rang. Dad passed away at 6:56 AM. I almost feel like I was there with him when it happened... I am so glad that my thoughts were on him during his last moments here on earth. Even though we were expecting this, its never easy to get that call. Such sadness, relief, and more sadness.
Megan and I went to see him one last time. We cried and held his hand. His little heart tattoo reminds us of his sweet, sensitive, and playful side.
Dad, you were so brave to endure what you did. You deserve to rest in peace now. We love you and know we will see you again some day. Watch over us now as we have done for you.
He had a fever a few days prior, so Windsor ordered more extensive labs. They wanted to send him to the hospital but unless it was going to make him more comfortable, I was against it. I didn't hear back about the Lab results until Saturday. It wasn't good. Dad's sodium levels were critically high and his vitals were dropping. His body was shutting down.
We called Megan and she booked flights right away. In the meantime, the nursing staff was such a calm presence. They made sure Dad was clean and they put lotion on his dry skin. When my Mom said her goodbyes and left, he was tucked in comfortably with oxygen in his nose. He looked serene.
A few hours later I was at LAX picking up Megan and her boyfriend, Erik -- we went straight to Windsor and even though it was after hours, we were able to see Dad.
He was breathing much harder and had a fever. BUT, he knew someone was there! And he knew someone was talking to him. His eyes moved in Megan's direction and then back to me. We reassured him "we're here Dad" "we love you" "hang in there". Megan hadn't seem him in this condition, so it was even more upsetting for her. Not easy for anyone, really.
The next morning, I woke a little before 7:00 with my mind focused on Dad. As I got out of bed ten minutes later, the phone rang. Dad passed away at 6:56 AM. I almost feel like I was there with him when it happened... I am so glad that my thoughts were on him during his last moments here on earth. Even though we were expecting this, its never easy to get that call. Such sadness, relief, and more sadness.
Megan and I went to see him one last time. We cried and held his hand. His little heart tattoo reminds us of his sweet, sensitive, and playful side.
Dad, you were so brave to endure what you did. You deserve to rest in peace now. We love you and know we will see you again some day. Watch over us now as we have done for you.
Tuesday, January 7, 2014
When Will It End?
The upside, the upside, the upside.... ? Things look so grim for Dad lately that sometimes I forget to look for the upside. Once I do, I find it immediately. Having Dad so close is a definite upside.
There is a noticeable change in Dad since he moved into the new home. I've seen this before and it seems that he is over-medicated and the Director of Nursing agrees with me. His face is taught, his jaw is locked open, his movement (if any) is extremely twitchy, and he can't speak. It's heart-wrenching to see a loved one look like this. He seems trapped. I spent the last week trying to get to the bottom of it. I talked with the nursing staff, I called his previous Doctor, I had the staff page his new doctor, and I had Dad's chart read to me at least three times. Nothing points to over-medication (besides his physical state). His meds are the same as they were at the Psych Ward.
Just to clarify, I'm not trying to make my Dad better. We all know he has Alzheimer's, but quality of life is our main goal, and I'm not sure he has much while in this state.
This is what he looked like the day he moved in...
And here he is two days later...
I had a personal debate about whether to share this photo. Ultimately, he looks rather peaceful, but you can still see the decline in two days time.
He has been that way for over a week now and most days he looks worse than that picture depicts. After days of searching for a reason and not finding one, I was emotionally spent. A few days later I had a meeting with the staff to review his care plan. They now know that we don't want any life-saving measures taken, no feeding tubes, no pneumonia vaccine.... we only want him to be comfortable. He isn't able to do much except lie there and twitch, so it comes as no surprise that he's not eating much either. The nurse informed me that if this continues and his weight drops more, he will qualify for Palliative Care and/or Hospice sooner rather than later.
I made it through the meeting without crying, but as I sat by his bedside with my hand on his chest playing the song "Georgia" on my phone, the sobs poured out. At this point, I don't care if it's the medication, I don't care if it's Alzheimer's, I don't care if the decline is from this most recent move... I just want my Dad to be at peace. I can see fear in his eyes. And I just want it to be over for him. Watching him go through this is killing me.
This was the first time that I so strongly wanted my Dad to leave this world. It was all I could think about. It's the only solution.
The tears never really went away that day. I cried on the way to a movie that Blake and I had been planning to see. I cried in the car after the movie. I cried in the parking lot when Blake was hugging me. A profound sadness has invaded my soul and my body and it's not leaving any time soon.
My Mom suggested I take a couple days off from visiting Dad since I had been there so much lately. Probably a good idea.
There is a noticeable change in Dad since he moved into the new home. I've seen this before and it seems that he is over-medicated and the Director of Nursing agrees with me. His face is taught, his jaw is locked open, his movement (if any) is extremely twitchy, and he can't speak. It's heart-wrenching to see a loved one look like this. He seems trapped. I spent the last week trying to get to the bottom of it. I talked with the nursing staff, I called his previous Doctor, I had the staff page his new doctor, and I had Dad's chart read to me at least three times. Nothing points to over-medication (besides his physical state). His meds are the same as they were at the Psych Ward.
Just to clarify, I'm not trying to make my Dad better. We all know he has Alzheimer's, but quality of life is our main goal, and I'm not sure he has much while in this state.
This is what he looked like the day he moved in...
And here he is two days later...
I had a personal debate about whether to share this photo. Ultimately, he looks rather peaceful, but you can still see the decline in two days time.
He has been that way for over a week now and most days he looks worse than that picture depicts. After days of searching for a reason and not finding one, I was emotionally spent. A few days later I had a meeting with the staff to review his care plan. They now know that we don't want any life-saving measures taken, no feeding tubes, no pneumonia vaccine.... we only want him to be comfortable. He isn't able to do much except lie there and twitch, so it comes as no surprise that he's not eating much either. The nurse informed me that if this continues and his weight drops more, he will qualify for Palliative Care and/or Hospice sooner rather than later.
I made it through the meeting without crying, but as I sat by his bedside with my hand on his chest playing the song "Georgia" on my phone, the sobs poured out. At this point, I don't care if it's the medication, I don't care if it's Alzheimer's, I don't care if the decline is from this most recent move... I just want my Dad to be at peace. I can see fear in his eyes. And I just want it to be over for him. Watching him go through this is killing me.
This was the first time that I so strongly wanted my Dad to leave this world. It was all I could think about. It's the only solution.
The tears never really went away that day. I cried on the way to a movie that Blake and I had been planning to see. I cried in the car after the movie. I cried in the parking lot when Blake was hugging me. A profound sadness has invaded my soul and my body and it's not leaving any time soon.
My Mom suggested I take a couple days off from visiting Dad since I had been there so much lately. Probably a good idea.
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