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.
Wednesday, March 19, 2014
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
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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...
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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.
Tuesday, December 31, 2013
Happy New HOME for Dad
Today is New Year's Eve and Dad has made it through another year in this life. Half of his past year was spent in the Geriatric Psych Ward at the West Los Angeles VA Hospital, but as of a few days ago, Dad is now in a skilled nursing facility called Windsor Gardens Convalescent Center in North Long Beach. 3 miles from my house.
Many hiccups along the way prevented him from moving to a home sooner. When I last wrote, we had found a place a couple months ago that would take Dad as long as he wasn't on anti-psychotic drugs. The Psych Ward agreed to wean him off the meds to test his reaction, and as we can all guess, that didn't go well. The aggression was back within days... he scratched a nurse in the face, shoved another nurse, and it took three staff members to bathe him one night because he was being so uncooperative. Soon he was back on Zyprexa and doing much better, but now we had to look at another housing option.
In the meantime, Dad's MediCal case worker called to say that his application was denied because he was already being taken care of by a government facility (the VA), so he didn't qualify for Long Term MediCal. I understand the logic here, but it seems weird that they would deny MediCal to patients who are in a government hospital. The hospital clearly isn't a long term solution or a home. We eventually figured out that we would have to move Dad to a new home, and then immediately re-apply with his new address.
The Social Workers looked into more homes on their contracted list, but finally asked if they could start looking at options outside their list and jurisdiction. I signed a release of information form, and within a week (two days after Christmas), I got a call saying they found a home and could discharge Dad that very day. That was fast.
I checked out the home an hour later. It's clean, bright, and the staff seems attentive. I gave the go-ahead to discharge Dad. As far as payment goes, Dad's Medicare Part A will pay up to 90 days in a skilled nursing facility until the MediCal kicks in. There are co-pays after the 20th day, but we will be reimbursed by MediCal retroactively.
Our favorite part was filling out the MediCal application again. Ugh. But it's in the mail, so now I can go celebrate the end of 2013 tonight. Happy New Year to you all.
Many hiccups along the way prevented him from moving to a home sooner. When I last wrote, we had found a place a couple months ago that would take Dad as long as he wasn't on anti-psychotic drugs. The Psych Ward agreed to wean him off the meds to test his reaction, and as we can all guess, that didn't go well. The aggression was back within days... he scratched a nurse in the face, shoved another nurse, and it took three staff members to bathe him one night because he was being so uncooperative. Soon he was back on Zyprexa and doing much better, but now we had to look at another housing option.
In the meantime, Dad's MediCal case worker called to say that his application was denied because he was already being taken care of by a government facility (the VA), so he didn't qualify for Long Term MediCal. I understand the logic here, but it seems weird that they would deny MediCal to patients who are in a government hospital. The hospital clearly isn't a long term solution or a home. We eventually figured out that we would have to move Dad to a new home, and then immediately re-apply with his new address.
The Social Workers looked into more homes on their contracted list, but finally asked if they could start looking at options outside their list and jurisdiction. I signed a release of information form, and within a week (two days after Christmas), I got a call saying they found a home and could discharge Dad that very day. That was fast.
I checked out the home an hour later. It's clean, bright, and the staff seems attentive. I gave the go-ahead to discharge Dad. As far as payment goes, Dad's Medicare Part A will pay up to 90 days in a skilled nursing facility until the MediCal kicks in. There are co-pays after the 20th day, but we will be reimbursed by MediCal retroactively.
Our favorite part was filling out the MediCal application again. Ugh. But it's in the mail, so now I can go celebrate the end of 2013 tonight. Happy New Year to you all.
Thursday, October 24, 2013
The Rules of Skilled Nursing
So, I was worried about having to learn about MediCal now that Dad will be moving to a nursing facility. What I should have been focusing on was the difference between Assisted Living/Alzheimer's homes vs. a Skilled Nursing Facility. There are a lot more rules in these types of facilities...
For example, we just recently found out that Dad is not allowed to be on an anti-psychotic drug. Since these drugs are really meant for patients with mental disorders like Schizophrenia or Bipolar Disorder, the skilled nursing homes cannot administer these drugs to Alzheimer's patients. I don't know for sure if the problem is with anti-psychotic drugs or with drugs that have the federal black box warning on them, but it's basically the same thing. (I understand the origin of these rules... the government is trying to stop the over-medicating of patients in nursing homes, which is a good thing. But what about when someone really needs the drug?)
So our problem is that Dad is on Olanzapine (Zyprexa) which seems to be curbing his aggression really well. The skilled nursing home that I toured the other day said they would just take him off the drug. But, again... we have a problem. Patients on these drugs need to be slowly weaned off in a controlled environment and then once that happens, doesn't that mean Dad would just become aggressive again? And I think we know what will happen next. He will be kicked out of the Nursing Home because they won't be able to handle him.
When I shared my revelations with the Doctor and Social Worker at the VA, they seemed surprised. Needless to say, Dad isn't moving anywhere until we can get the medication figured out. And the Social Worker assured me that if he was kicked out of the new home that they would just return him back to the psych ward. So much flip-flopping around. Poor Dad.
The only good news is, I really liked the home that I toured. It's called Del Rio in the city of Bell Gardens and the facility has big outdoor spaces, wide hallways, and a clean appearance. I kind of like that it backs up to the LA River too. It seems appropriate since Dad is a genuine Angeleno.
For example, we just recently found out that Dad is not allowed to be on an anti-psychotic drug. Since these drugs are really meant for patients with mental disorders like Schizophrenia or Bipolar Disorder, the skilled nursing homes cannot administer these drugs to Alzheimer's patients. I don't know for sure if the problem is with anti-psychotic drugs or with drugs that have the federal black box warning on them, but it's basically the same thing. (I understand the origin of these rules... the government is trying to stop the over-medicating of patients in nursing homes, which is a good thing. But what about when someone really needs the drug?)
So our problem is that Dad is on Olanzapine (Zyprexa) which seems to be curbing his aggression really well. The skilled nursing home that I toured the other day said they would just take him off the drug. But, again... we have a problem. Patients on these drugs need to be slowly weaned off in a controlled environment and then once that happens, doesn't that mean Dad would just become aggressive again? And I think we know what will happen next. He will be kicked out of the Nursing Home because they won't be able to handle him.
When I shared my revelations with the Doctor and Social Worker at the VA, they seemed surprised. Needless to say, Dad isn't moving anywhere until we can get the medication figured out. And the Social Worker assured me that if he was kicked out of the new home that they would just return him back to the psych ward. So much flip-flopping around. Poor Dad.
The only good news is, I really liked the home that I toured. It's called Del Rio in the city of Bell Gardens and the facility has big outdoor spaces, wide hallways, and a clean appearance. I kind of like that it backs up to the LA River too. It seems appropriate since Dad is a genuine Angeleno.
We Walk the Walk
Long Beach's 3rd annual 'Walk to End Alzheimer's' was a huge success. As the co-chair for the walk, I can announce that the walk exceeded all it's goals, attendance grew enormously, and we even had Congressman Alan Lowenthal share a few words about his dedication to this cause.
On a personal note, our team surpassed our goal from last year and ended up raising $6165.00!!! Even more amazing is that our team consisted of 20 people this year! Thank you to everyone who came out to walk with us and support this important cause. I can't tell you how much it means to my family. I actually stood at the finish line with tears in my eyes as I watched all the walkers because I could feel how blessed we are to have the support and love of our friends and family.
Below is a picture of our wonderful team... I don't think we got a picture with all 20 of us, but this will do. Oh, and a picture of me with the Congressman.
On a personal note, our team surpassed our goal from last year and ended up raising $6165.00!!! Even more amazing is that our team consisted of 20 people this year! Thank you to everyone who came out to walk with us and support this important cause. I can't tell you how much it means to my family. I actually stood at the finish line with tears in my eyes as I watched all the walkers because I could feel how blessed we are to have the support and love of our friends and family.
Below is a picture of our wonderful team... I don't think we got a picture with all 20 of us, but this will do. Oh, and a picture of me with the Congressman.
Tuesday, October 8, 2013
Closure
My news today isn't good, but it's also not shocking. My Mom and I had a meeting yesterday at the VA home to fight for my Dad's place in the home. In my opinion, the Doctor's mind was already made up and there was nothing we could have said or done to change it. He will not be returning to the VA home that I once called his 'final resting place'.
I'm already exhausted when I think of describing every little nuance of the hour long meeting yesterday, so I will just touch on the key points. The doctor stated that my Dad's aggression hasn't diminished and that he is still a threat to others. I have been getting almost the exact opposite report from the Psych Unit the last 6 weeks. Dad practically sleeps half the day now, he can't walk, and he is very calm and relaxed. So, who is telling the truth? Even worse though, the Doctor said that their particular Alzheimer's facility is not equipped to handle residents like my Dad. He is too aggressive, too advanced in the disease, too difficult to manage... basically he has advanced Alzheimer's. What were they expecting? What will happen to all the other residents when they reach that point? Will they get removed from the home as well? You can't call yourselves an Alzheimer's facility if you only want the timid, old, and moderate-stage patients. It doesn't work that way with this disease. It's extremely unpredictable and can take a turn to looney-toon town with the drop of a hat. Plus, there is currently no way to prevent, slow, or cure Alzheimer's. Therefore, none of these patients are getting better... they are all getting worse.
Apparently they have discharged 7-8 other patients in addition to my Dad.
Pathetic. Pathetic. Pathetic.
Pathetic excuses. Pathetic attempt at proper care for an Alzheimer's patient. Pathetic thing to do to a veteran.
So, we said our peace and we have some closure. Not much closure, but enough so we can move on to tackle the new and unknown. Mom and I finished Dad's Medi-Cal application last night and I just dropped it in the mail. The VA will graciously help place my Dad in a 'VA approved' skilled nursing facility and will pay for the first 30 days until Medi-Cal kicks in to supplement Dad's monthly housing payments.
Time to start touring homes again.
I'm already exhausted when I think of describing every little nuance of the hour long meeting yesterday, so I will just touch on the key points. The doctor stated that my Dad's aggression hasn't diminished and that he is still a threat to others. I have been getting almost the exact opposite report from the Psych Unit the last 6 weeks. Dad practically sleeps half the day now, he can't walk, and he is very calm and relaxed. So, who is telling the truth? Even worse though, the Doctor said that their particular Alzheimer's facility is not equipped to handle residents like my Dad. He is too aggressive, too advanced in the disease, too difficult to manage... basically he has advanced Alzheimer's. What were they expecting? What will happen to all the other residents when they reach that point? Will they get removed from the home as well? You can't call yourselves an Alzheimer's facility if you only want the timid, old, and moderate-stage patients. It doesn't work that way with this disease. It's extremely unpredictable and can take a turn to looney-toon town with the drop of a hat. Plus, there is currently no way to prevent, slow, or cure Alzheimer's. Therefore, none of these patients are getting better... they are all getting worse.
Apparently they have discharged 7-8 other patients in addition to my Dad.
Pathetic. Pathetic. Pathetic.
Pathetic excuses. Pathetic attempt at proper care for an Alzheimer's patient. Pathetic thing to do to a veteran.
So, we said our peace and we have some closure. Not much closure, but enough so we can move on to tackle the new and unknown. Mom and I finished Dad's Medi-Cal application last night and I just dropped it in the mail. The VA will graciously help place my Dad in a 'VA approved' skilled nursing facility and will pay for the first 30 days until Medi-Cal kicks in to supplement Dad's monthly housing payments.
Time to start touring homes again.
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 23, 2013
Rudolph
After explaining my concern, she promptly paged the doctor to come take a look at it. Since Dad has had three Staph infections in the past year, I am worried that although the nose may seem like a strange place to get one, that may be what it is. (I actually know someone that had a staph infection in his nose and it wasn't pretty). I left before the Doctor arrived, so I'm sure they will call me if it's anything serious, but I couldn't help humming Rudolph the Red-Nosed Reindeer as I got in my car to leave.
Dad has now been in the Psych Ward for 5 1/2 weeks and it's been 6 whole weeks since he was admitted to the hospital. I visit him twice a week, and Megan was able to see him while she was here last week visiting. He still isn't walking, but he's much more stable on the medicine. He is completely off the Depakote and is only taking Olanzapine. There have been a couple incidents of aggression or agitation (he ripped a nurse's uniform pocket the other day when she was trying to help him) but for the most part, he has calmed down quite a bit.
As far as his future goes, I have no idea what will happen. For now, he's in the Psych Ward and they aren't rushing him out of there. He may have to go to a skilled nursing facility after, or he could be admitted back into the Veterans home. It changes every day, so I'm not worrying about it until they tell me it's time for his discharge.
Tuesday, August 6, 2013
The Upside to Scabies
Turns out there is an upside to Dad having Scabies (for the 10th time!). It's such a contagious little creeper, that Dad has been assigned his own room at the Psych Ward to quarantine him from the other patients while he finishes the scabies treatment. Now how about that?!
My Mom and I visited him yesterday and he was peacefully taking a post-lunch nap in his little bed next to his large window in his private room. Both of his hands were resting on his chest and he was breathing deeply. He was peaceful. It feels good to say that. A welcomed and much appreciated word after the last few weeks.
My Mom and I visited him yesterday and he was peacefully taking a post-lunch nap in his little bed next to his large window in his private room. Both of his hands were resting on his chest and he was breathing deeply. He was peaceful. It feels good to say that. A welcomed and much appreciated word after the last few weeks.
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.
Monday, July 22, 2013
#psychward
A week ago I was pretty devastated seeing Dad tied to the bed in his drug-induced state, but the next day I woke up ready to fight (I just needed that one day of mourning). I wrote a strongly worded email to the social worker at the home who has always responded promptly. I explained how upset I was to see Dad in this state, how I felt the home dumped him in General Medicine and made him sit in a bed for 4 days in a doped -up stupor tied to the bed, and most of all, how upset I was that no one at the home had contacted me.
The Social Worker called me fifteen minutes later. He didn't have answers for most of my questions, but he did assure me that they are not kicking Dad out of the home. That is not their intention at all. Their protocol at this point is to re-evaluate my Dad when he is ready to be discharged from the psych ward to make sure he is still a good fit with the home. So, we're not out of the woods yet, but I am happy to say no one is giving up on my Dad... for now.
And that definitely applies to his Doctor at the psych ward. She spends so much time talking to me, answering my questions, asking me questions. She told me "We're in no hurry to get him out of here. We want to make sure he is stable and that his medicine is correct so that when he returns to the home, he will not fail."
When I visited him last Thursday he was smiling, speaking words and small sentences, and he even made a funny face once or twice. They're giving him Depakote and Olanzapine (Zyprexa) and he is being monitored throughout the day. He is still restrained around his waist in a big wheelchair because he cannot walk and they are worried he will fall out. But, he seemed almost back to normal... his type of normal at least.
After visiting him today, his 11th day of being restrained to either a chair or bed, he still isn't walking. They try to get him up a few times a day, but the motor function isn't there and I am sure the medicine isn't helping. At this point, they are worried it may not come back. Since it's been 11 days, he may have forgotten and his body may not have that instinct any more. I spoke with the Psychiatrist and a General Medicine Doctor when I arrived and they are working on a plan to get him walking again. They are also still tweaking the medicine.
And so... we trudge along and take it day by day.
Thank you to everyone for their support, encouragement, and love. It's amazing how all that positivity can boost our spirits. It also feels good to know people who may have never even met my Dad are rooting for him! It means so much.
Monday, July 15, 2013
A Heavy Heart
As I made my way out of the VA hospital today, I noticed those quintessential Los Angeles palm trees, and I felt the warm sun on my back, and I could see the incredible blue sky, but I just stared straight forward and thought to myself... none of that really matters. All that matters is my Dad -- laying up on the 4th floor in his hospital bed, arms tied to the posts, mouth gaping open, cheeks sunk in, and eyes practically rolling up into his head.
I sit here with a heavy heart today. Alzheimer's has taken my family on such a twisted journey, that I feel like I can handle anything, and I can, but I just wasn't prepared to see my Dad looking like that today.
He was really out of it, very doped up, and almost catatonic at first. His mouth was stuck open and since this made it impossible to form words, he just made noises. After greeting him, I walked back out into the hallway to speak with the nurse. I stood there waiting for her to finish with another patient and that's when the tears began rolling down my cheeks. I dropped my head to hide my face and held in the sobs that were threatening to come out.
They paged the Doctor and I went back in to Dad's room. He noticed that I was there and made some more noises. I actually silently pleaded... Why is my Dad being held hostage on this earth? Give him mercy. Don't make him live like this.
This morning, Dad had become agitated again, so they injected him with some medicine. The twitching, disorientation, and gaping mouth are side effects of that injection. I have no idea if he was like that all weekend long. They didn't feed him lunch because they weren't sure he could swallow.
Finally I spoke with the Psychiatrist, and found out that they are moving him down to the Psych Ward this afternoon so they can begin to clear him of these strong medicines in a controlled and safe environment. That decision brought me a little relief. The Psychiatrist and General Doctor have both shared with me that they don't think he will be welcomed back into the VA home where he was living. Ultimately, that is the decision of the home, so we don't know right now. It scares me to think about what the next couple of weeks will bring, but honestly, the most important thing for me right now is to get Dad back to normal. Whatever normal is for him these days, I have no idea. But it definitely wasn't what I saw today.
I stayed by Dad's bedside holding his hand. He became more and more cognoscente in the hour that I was there and even gave me a couple small smiles. I wiped the boogers from his eye, gave him drops of water for his dry mouth, and applied chapstick to his cracked lips. It wasn't much, but it felt good to do something for him.
Today Alzheimer's wins. I am defeated and for the moment have no fight left in me. I know that will change in the coming days when we have to fight to keep him in his home.
I took a picture of Dad but I feel that it's pretty disheartening, so I won't share it. I will, though, keep it as proof of the ugly face of Alzheimer's. Below is a picture of his restraints and of us holding hands.
I sit here with a heavy heart today. Alzheimer's has taken my family on such a twisted journey, that I feel like I can handle anything, and I can, but I just wasn't prepared to see my Dad looking like that today.
He was really out of it, very doped up, and almost catatonic at first. His mouth was stuck open and since this made it impossible to form words, he just made noises. After greeting him, I walked back out into the hallway to speak with the nurse. I stood there waiting for her to finish with another patient and that's when the tears began rolling down my cheeks. I dropped my head to hide my face and held in the sobs that were threatening to come out.
They paged the Doctor and I went back in to Dad's room. He noticed that I was there and made some more noises. I actually silently pleaded... Why is my Dad being held hostage on this earth? Give him mercy. Don't make him live like this.
This morning, Dad had become agitated again, so they injected him with some medicine. The twitching, disorientation, and gaping mouth are side effects of that injection. I have no idea if he was like that all weekend long. They didn't feed him lunch because they weren't sure he could swallow.
Finally I spoke with the Psychiatrist, and found out that they are moving him down to the Psych Ward this afternoon so they can begin to clear him of these strong medicines in a controlled and safe environment. That decision brought me a little relief. The Psychiatrist and General Doctor have both shared with me that they don't think he will be welcomed back into the VA home where he was living. Ultimately, that is the decision of the home, so we don't know right now. It scares me to think about what the next couple of weeks will bring, but honestly, the most important thing for me right now is to get Dad back to normal. Whatever normal is for him these days, I have no idea. But it definitely wasn't what I saw today.
I stayed by Dad's bedside holding his hand. He became more and more cognoscente in the hour that I was there and even gave me a couple small smiles. I wiped the boogers from his eye, gave him drops of water for his dry mouth, and applied chapstick to his cracked lips. It wasn't much, but it felt good to do something for him.
Today Alzheimer's wins. I am defeated and for the moment have no fight left in me. I know that will change in the coming days when we have to fight to keep him in his home.
I took a picture of Dad but I feel that it's pretty disheartening, so I won't share it. I will, though, keep it as proof of the ugly face of Alzheimer's. Below is a picture of his restraints and of us holding hands.
Friday, July 12, 2013
My Dad's Brain
I know how blessed and lucky we are that Dad was admitted into the West Los Angeles VA home. But, I am reminded again today as I sit on the phone with his Doctor.
Dad was taken to the ER yesterday because his behavior has become dangerous. In the last few weeks, I have been receiving more calls about altercations with another resident or caregiver.... scratching or hitting or even falling down. I witnessed it a bit earlier this week when I went to visit and he was running away from the caregivers who were trying to help him change. When they got too close, he pushed one of them and lashed out at another (thankfully missing her).
Yesterday escalated even more as he began brandishing silverware. They decided to take him to the ER. His behavior and mood didn't improve over night, so that's when they decided to admit him for further evaluation.
We are LUCKY and BLESSED because other homes are so quick to give up on my Dad. He has been kicked out before and it was heart-wrenching. I understand, because why would anyone want a resident who has violent outbursts that endanger other people. But, since we're dealing with a Government Agency that cares for Veterans, every step and precaution is being taken to see that he gets the best care. They aren't giving up on him. And it's unlikely that he'll be kicked out. Because then where would he go?
Alzheimer's is such a tricky disease. The Doctor even said, "We actually know quite a bit about the disease, but every person is different, and the disease proves to be very unpredictable." They also did a CT scan and everything looked normal EXCEPT for the very noticeable shrinkage of my Dad's brain.
As I've mentioned before, www.alz.org has an amazing Brain Tour that shows the effects of Alzheimer's on the brain. Click here to visit the tour. Here is just a glimpse of what my Dad's brain probably looks like. Pretty Shocking...
Our Poor Dad.
For now, it looks like he spending the weekend in the hospital. More updates to come...
Dad was taken to the ER yesterday because his behavior has become dangerous. In the last few weeks, I have been receiving more calls about altercations with another resident or caregiver.... scratching or hitting or even falling down. I witnessed it a bit earlier this week when I went to visit and he was running away from the caregivers who were trying to help him change. When they got too close, he pushed one of them and lashed out at another (thankfully missing her).
Yesterday escalated even more as he began brandishing silverware. They decided to take him to the ER. His behavior and mood didn't improve over night, so that's when they decided to admit him for further evaluation.
We are LUCKY and BLESSED because other homes are so quick to give up on my Dad. He has been kicked out before and it was heart-wrenching. I understand, because why would anyone want a resident who has violent outbursts that endanger other people. But, since we're dealing with a Government Agency that cares for Veterans, every step and precaution is being taken to see that he gets the best care. They aren't giving up on him. And it's unlikely that he'll be kicked out. Because then where would he go?
Alzheimer's is such a tricky disease. The Doctor even said, "We actually know quite a bit about the disease, but every person is different, and the disease proves to be very unpredictable." They also did a CT scan and everything looked normal EXCEPT for the very noticeable shrinkage of my Dad's brain.
As I've mentioned before, www.alz.org has an amazing Brain Tour that shows the effects of Alzheimer's on the brain. Click here to visit the tour. Here is just a glimpse of what my Dad's brain probably looks like. Pretty Shocking...
Our Poor Dad.
For now, it looks like he spending the weekend in the hospital. More updates to come...
Friday, June 28, 2013
Moo, Neigh, and Gobble Gobble
As a child, we loved listening to my Dad make animal sounds. They always sounded more like an animal and less like a human-produced sound. He was that good at it. My favorites were Moo, Neigh, and Gobble Gobble.
Luckily for Emry, I got two of them on video today. Although, as Megan pointed out when I texted her the video, the Moo does kind of sound like the cow is either dying or giving birth. But hey, this is an Alzheimer's patient we're talking about, so the fact that he did it at all is pretty amazing.
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(How cute are they?!)
My visit with Dad today was necessary since I had not been there in a couple weeks (June was insanely busy) . The staff called me yesterday to inform me that Dad had been striking out at caregivers and had scratched another resident in the face. I never know what triggers his erratic behaviors, but I have a feeling that through the fog of Alzheimer's, on some level, he misses seeing a familiar face (namely mine) and could be feeling a bit abandoned. Oops.
We had a great time together and Dad was all smiles. I talked to the staff, and they are adjusting his medicine so that it will be administered 3 times a day (in a smaller dose) instead of the previous once a day. Good plan.
Lastly, at 16 months old, Emry is now saying Bye Bye. Sometimes it's Bye Bye Kitty or Daddy. But, today it was "Bye Bye Gappa."
Makes your heart melt, doesn't it?
So, without further ado... Here are some animal sound videos!
Luckily for Emry, I got two of them on video today. Although, as Megan pointed out when I texted her the video, the Moo does kind of sound like the cow is either dying or giving birth. But hey, this is an Alzheimer's patient we're talking about, so the fact that he did it at all is pretty amazing.
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My visit with Dad today was necessary since I had not been there in a couple weeks (June was insanely busy) . The staff called me yesterday to inform me that Dad had been striking out at caregivers and had scratched another resident in the face. I never know what triggers his erratic behaviors, but I have a feeling that through the fog of Alzheimer's, on some level, he misses seeing a familiar face (namely mine) and could be feeling a bit abandoned. Oops.
We had a great time together and Dad was all smiles. I talked to the staff, and they are adjusting his medicine so that it will be administered 3 times a day (in a smaller dose) instead of the previous once a day. Good plan.
Lastly, at 16 months old, Emry is now saying Bye Bye. Sometimes it's Bye Bye Kitty or Daddy. But, today it was "Bye Bye Gappa."
Makes your heart melt, doesn't it?
So, without further ado... Here are some animal sound videos!
Wednesday, April 10, 2013
Funny Voicemails
I used to cringe when the phone would ring. I even had to change my ring tone at one point because it gave me such anxiety. The only calls I get now are from the staff at the VA informing me of little incidents that happen involving my Dad. It's standard protocol and it's usually nothing serious. For example, the nurse called to tell me that a resident tried to punch my Dad but missed, then my Dad tried to punch him back whereupon he missed and accidentally hit the nurse. Picturing these two old men trying to hit each other is actually pretty funny. Too bad the nurse got hit though.
But here is the craziest and funniest call yet:
(this is verbatim from my voicemail except I changed the name)
"Hi Kristen, this is Kendra, I'm a nurse at the Memory Care unit where your Father is at. Um, another resident tried to lift your Father off a toilet and they both fell... in the shower floor. Um, right now there are no signs or symptoms of injury with your Father... um can you please give us a call back if you have any questions."
Do I have questions? Yes, I have sooooo many questions. How... what... why... ????
I'm just glad that Dad doesn't seem to be instigating all these incidents and that for the most part he is adapting well.
But here is the craziest and funniest call yet:
(this is verbatim from my voicemail except I changed the name)
"Hi Kristen, this is Kendra, I'm a nurse at the Memory Care unit where your Father is at. Um, another resident tried to lift your Father off a toilet and they both fell... in the shower floor. Um, right now there are no signs or symptoms of injury with your Father... um can you please give us a call back if you have any questions."
Do I have questions? Yes, I have sooooo many questions. How... what... why... ????
I'm just glad that Dad doesn't seem to be instigating all these incidents and that for the most part he is adapting well.
Tuesday, March 19, 2013
Some nice Recognition
Upside to Dementia has been named one of the top caregiver stories on the Web by Caring.com! How wonderful and what a nice recognition! In a couple of paragraphs, the writer really touches on what this whole journey is about for us: Laughter, Family, Alzheimer's, Healthcare, and the struggle financially to find Dad a home with good care. To read the quick blurb about us, click here.
My weekly visits with Dad have been very pleasant. We walk up and down the hallways (Emry especially loves that since she is learning to walk), we stare out the many large windows in the facility and Dad points out people walking outside on the grass (you can probably see Emry's little hand prints along the glass), and I get to know more and more of the staff at the VA. They all take quite an interest to how Dad reacts around me and are happy to see that he is smiley, silly, and affectionate.
As for his incontinence issues, I ordered Dad two jumpsuits that zip up the back, so that he will not be able to go to the bathroom anywhere other than his diaper. He will also not be able to sprinkle his feces around the facility either. Wow, I just wrote about sprinkling feces as if it was a normal activity... so weird...
Anyway, I never got around to explaining the financial aspects of Dad's new home. The VA will take 70% of his monthly income. What a relief. They also require that he enroll in Medicare and assured me that the VA will pay all his penalties! Aside from clothes and a few toiletries, the VA will pretty much take care of everything. We are really very lucky to have secured him a spot in this beautiful and well managed facility.
So, now that Dad has a little bit of money in the bank, I can get him some much needed new clothes! For starters... some elastic waist jeans. Weighing in at 135, he is just skin and bones and his clothes are just hanging on him. I talked to the dietician about starting him on some Ensure.
My weekly visits with Dad have been very pleasant. We walk up and down the hallways (Emry especially loves that since she is learning to walk), we stare out the many large windows in the facility and Dad points out people walking outside on the grass (you can probably see Emry's little hand prints along the glass), and I get to know more and more of the staff at the VA. They all take quite an interest to how Dad reacts around me and are happy to see that he is smiley, silly, and affectionate.
As for his incontinence issues, I ordered Dad two jumpsuits that zip up the back, so that he will not be able to go to the bathroom anywhere other than his diaper. He will also not be able to sprinkle his feces around the facility either. Wow, I just wrote about sprinkling feces as if it was a normal activity... so weird...
Anyway, I never got around to explaining the financial aspects of Dad's new home. The VA will take 70% of his monthly income. What a relief. They also require that he enroll in Medicare and assured me that the VA will pay all his penalties! Aside from clothes and a few toiletries, the VA will pretty much take care of everything. We are really very lucky to have secured him a spot in this beautiful and well managed facility.
So, now that Dad has a little bit of money in the bank, I can get him some much needed new clothes! For starters... some elastic waist jeans. Weighing in at 135, he is just skin and bones and his clothes are just hanging on him. I talked to the dietician about starting him on some Ensure.
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