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.
Showing posts with label tears. Show all posts
Showing posts with label tears. Show all posts
Friday, April 18, 2014
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...
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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.
Monday, September 30, 2013
It's Unfair!
I sit here with salty tear stains on my cheeks and I just want to scream. I know life isn't fair and I know life never really gave my Dad a break, but sometimes I just want to scream, "It isn't FAIR!"
A few weeks ago, the staff at the Psych Ward started talking to us about his discharge. It was pretty evident that the VA home was not going to re-accept him, and I was pretty calm about it. (We always knew that was a strong possibility.) My mom on the other hand was fuming over the phone every time we talked about it. I honestly felt overwhelmed... I didn't have the time or energy to fight this. It takes time to drive to West LA... and babysitters cost money... and getting the right person on the phone is almost impossible... and when I do talk to the right person, I never get a straight answer... and let's not forget that I have my own life!
What imploded my attitude of 'calm acceptance' was the arrival of Dad's MediCal application. Since he has no money, Dad will need to apply for MediCal and that will pay for his new home. I spent the last 3-4 years getting to know the ins and outs of the VA system. We waited 2 1/2 years to get Dad in the VA home. We planned and we were organized, and now we have to start all over with a new system I know nothing about.
Well, Mom, now both of us are fuming (or crying and screaming).
Talking this morning, we feel that we need to exhaust every resource to keep him in the VA home. We don't feel comfortable with anything less. I just got off the phone with two VA Social Workers. I managed to keep it together when I spoke to the Social Worker from the home, and he was receptive to having the Doctor look back over Dad's file now that he seems to be less aggressive. The second Social Worker basically just listened to my concerns and then told me to fill out the MediCal form asap. That's when I started crying on the phone. I really tried to keep it together, but no such luck.
The bottom line is this: Dad has Alzheimer's. All of his behavioral issues and motor functions are affected by Alzheimer's. So, for the VA ALZHEIMER'S home to kick Dad out because he is aggressive or because he lost the ability to walk and has a restraint around his stomach keeping him from falling out of his chair -- is UNFAIR. It's all a part of Alzheimer's. And that is why we are fuming.
On another note, we are once again participating in The Long Beach Walk to End Alzheimer's. And team "UpsidetoDementia" is fired up! Click on the link to learn more, to register, or to donate to end this disease! Kristen's Walk Page
A few weeks ago, the staff at the Psych Ward started talking to us about his discharge. It was pretty evident that the VA home was not going to re-accept him, and I was pretty calm about it. (We always knew that was a strong possibility.) My mom on the other hand was fuming over the phone every time we talked about it. I honestly felt overwhelmed... I didn't have the time or energy to fight this. It takes time to drive to West LA... and babysitters cost money... and getting the right person on the phone is almost impossible... and when I do talk to the right person, I never get a straight answer... and let's not forget that I have my own life!
What imploded my attitude of 'calm acceptance' was the arrival of Dad's MediCal application. Since he has no money, Dad will need to apply for MediCal and that will pay for his new home. I spent the last 3-4 years getting to know the ins and outs of the VA system. We waited 2 1/2 years to get Dad in the VA home. We planned and we were organized, and now we have to start all over with a new system I know nothing about.
Well, Mom, now both of us are fuming (or crying and screaming).
Talking this morning, we feel that we need to exhaust every resource to keep him in the VA home. We don't feel comfortable with anything less. I just got off the phone with two VA Social Workers. I managed to keep it together when I spoke to the Social Worker from the home, and he was receptive to having the Doctor look back over Dad's file now that he seems to be less aggressive. The second Social Worker basically just listened to my concerns and then told me to fill out the MediCal form asap. That's when I started crying on the phone. I really tried to keep it together, but no such luck.
The bottom line is this: Dad has Alzheimer's. All of his behavioral issues and motor functions are affected by Alzheimer's. So, for the VA ALZHEIMER'S home to kick Dad out because he is aggressive or because he lost the ability to walk and has a restraint around his stomach keeping him from falling out of his chair -- is UNFAIR. It's all a part of Alzheimer's. And that is why we are fuming.
On another note, we are once again participating in The Long Beach Walk to End Alzheimer's. And team "UpsidetoDementia" is fired up! Click on the link to learn more, to register, or to donate to end this disease! Kristen's Walk Page
Friday, August 2, 2013
Emotions Run High
The past few weeks, I find that I am either on the verge of tears when I think of Dad or just feeling depressed about him. I actually went an entire week without crying, but then last night after mexican food and some tequila, the tears came again. Note to self... tequila may not be the best medicine. Anyway....
Dad's still in the Geriatric Psych Ward. It's been three weeks. And he still isn't walking.
When I visited him the first week he was there, I finally felt optimistic that he could be diluted of some of those heavy medications and return to a more regular state. He already seemed so focused and his personality was still there. But, with every visit since then, he just seems to be declining... but not in an Alzheimer's way of declining, in a medicated way. Yesterday he was twitching, mumbling and grunting, barely able to focus on me, and extremely drowsy.
When I tell the staff that just three weeks ago Dad was walking and talking (or at least forming words if not sentences), dancing to music, and was able to hold a fork and feed himself... I feel like they don't believe me. Since they didn't know my Dad before he was admitted in the psych ward, how would they know what his normal state is? Of course they wouldn't believe that the man confined to a chair that I visited yesterday would be capable of all those actions.
On the other hand, I understand that we are trying to curb his aggression and I am so thankful that I am not the sole person in charge of his care. (The VA accepted him as their responsibility ever since he moved into the VA home.) But, let's say that my Dad lives another year, should he be condemned to this quality of life? I mean, he really has no quality of life right now, but I think it's because of the meds not the disease at the moment. Trust me, I know the reality of this disease. I know that Dad will eventually forget how to walk, how to swallow, and he will lose his reflexes making the probability of choking on food a very real one. He will eventually stop eating. Many people believe that you can't die of Alzheimer's, you just die with Alzheimer's. But my Dad is dying of Alzheimer's. And it's a pretty shitty way of leaving this earth. So, adding the medications to this already horrible disease frustrates me.
(The doctor did inform us that she is trying to wean him off of the Depakote over the next few days to see if he will be able to walk again.)
We were also told that if Dad cannot regain the power to walk again, he will not be accepted back into the home. They only want ambulatory patients. So, the VA would help find him a skilled nursing facility that accepts MediCal near Long Beach where I live. Most of these places (especially in Long Beach) are utterly depressing with four beds to a room and dark, dirty corridors. Can things get any better for us and Dad? Ugh.
The only positive thing to share right now is that we are going to start Dad on a Palliative Care plan. We found his Advanced Directive where he stated he didn't want any life saving measures, and a Palliative Care Plan will help us achieve his wishes. It focuses on providing relief from the symptoms, pain, and stress for patients with serious illnesses but will not prolong his life in any way. A good example would be if he was to contract Pneumonia, we would then treat the pain and symptoms, but not the infection. The Doctor thinks he is in some of the last stages of Alzheimer's. She is giving us a very loose timeline of about a year.
So, with all this information swirling around in my head, I'm sure you can understand why emotions are running high.
Also, in the past few weeks, we have been receiving so much support from readers and family and friends who relate to our story and are battling the same type of situations with their loved ones. We so appreciate you reaching out. It's very comforting to know we're not the only ones.
Dad's still in the Geriatric Psych Ward. It's been three weeks. And he still isn't walking.
When I visited him the first week he was there, I finally felt optimistic that he could be diluted of some of those heavy medications and return to a more regular state. He already seemed so focused and his personality was still there. But, with every visit since then, he just seems to be declining... but not in an Alzheimer's way of declining, in a medicated way. Yesterday he was twitching, mumbling and grunting, barely able to focus on me, and extremely drowsy.
When I tell the staff that just three weeks ago Dad was walking and talking (or at least forming words if not sentences), dancing to music, and was able to hold a fork and feed himself... I feel like they don't believe me. Since they didn't know my Dad before he was admitted in the psych ward, how would they know what his normal state is? Of course they wouldn't believe that the man confined to a chair that I visited yesterday would be capable of all those actions.
On the other hand, I understand that we are trying to curb his aggression and I am so thankful that I am not the sole person in charge of his care. (The VA accepted him as their responsibility ever since he moved into the VA home.) But, let's say that my Dad lives another year, should he be condemned to this quality of life? I mean, he really has no quality of life right now, but I think it's because of the meds not the disease at the moment. Trust me, I know the reality of this disease. I know that Dad will eventually forget how to walk, how to swallow, and he will lose his reflexes making the probability of choking on food a very real one. He will eventually stop eating. Many people believe that you can't die of Alzheimer's, you just die with Alzheimer's. But my Dad is dying of Alzheimer's. And it's a pretty shitty way of leaving this earth. So, adding the medications to this already horrible disease frustrates me.
(The doctor did inform us that she is trying to wean him off of the Depakote over the next few days to see if he will be able to walk again.)
We were also told that if Dad cannot regain the power to walk again, he will not be accepted back into the home. They only want ambulatory patients. So, the VA would help find him a skilled nursing facility that accepts MediCal near Long Beach where I live. Most of these places (especially in Long Beach) are utterly depressing with four beds to a room and dark, dirty corridors. Can things get any better for us and Dad? Ugh.
The only positive thing to share right now is that we are going to start Dad on a Palliative Care plan. We found his Advanced Directive where he stated he didn't want any life saving measures, and a Palliative Care Plan will help us achieve his wishes. It focuses on providing relief from the symptoms, pain, and stress for patients with serious illnesses but will not prolong his life in any way. A good example would be if he was to contract Pneumonia, we would then treat the pain and symptoms, but not the infection. The Doctor thinks he is in some of the last stages of Alzheimer's. She is giving us a very loose timeline of about a year.
So, with all this information swirling around in my head, I'm sure you can understand why emotions are running high.
Also, in the past few weeks, we have been receiving so much support from readers and family and friends who relate to our story and are battling the same type of situations with their loved ones. We so appreciate you reaching out. It's very comforting to know we're not the only ones.
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