Wednesday, September 15, 2010
He's holding on ...
My sister just called to tell me Pop's in the hospital with what was first thought to be a heart attack but the chest pain is from his lungs being so filled with fluid that it's putting pressure on his heart, He's now 88 and has been totally bed ridden for two years and it's been almost 8 years since his first stroke. This is happening at the worst time for me with the new jobs, moving into the new condo with Lisa and more but I have had an undeniable feeling that he's hanging on until I go back and see him one last time...making arrangements to fly back asap...I'm coming Pop!
Wednesday, September 1, 2010
Compensating a Family Caregiver
Given the still-fragile economy, a growing number of families are compensating relatives who serve as caregivers to elders, elder-law attorneys say.
But to avoid stoking family tensions or running afoul of Medicaid eligibility requirements, it's important to draft a formal employment agreement--and disclose the arrangement to the entire family.
According to a recent report by the National Alliance for Caregiving and AARP, about 43.5 million Americans look after someone age 50 or older, up 28% from 2004. While no one tracks how many are paid, elder-law attorneys say the numbers are rising.
Howard S. Krooks, an elder-law attorney who practices in Boca Raton, Fla., and Rye Brook, N.Y., says nearly all his clients who serve as caregivers are compensated. Such cases currently comprise about 20% of his workload, a figure that has doubled since before the recession. "When people are out of work," he says, "they are more likely to ask for payment."
Friday, April 2, 2010
It's time to go back...
It's been 17 months since I last saw or communicated with Pop in any way...our last encounter was in the driveway of our home in Sun City West the afternoon Kathy (sister) loaded him in a caravan of minivans and drove off at sunset headed back to my childhood home of Rochester, NY where he was placed into a nursing home and Mom went into assisted living with my sister living in the middle and tending to both on a daily basis. He just turned 88 on March 21st, is bed ridden, partially paralyzed, incontinent and now with mild to moderate dementia and on hospice care....waiting.
I need to go back and let him go...
I need to go back and let him go...
Thursday, April 1, 2010
The 2010 Caregiver Conference
Sign Up Today for the Caregiver Education Conference!
Alzheimer's Association Caregiver Education Conference Provides Invaluable Education
From communication strategies to related dementias, caregiver stress to the latest updates on the state of Alzheimer's research and more, the 19th Annual Central Arizona Caregiver Education Conference is a day not to be missed! Taking place at The East Valley Institute of Technology on April 7, 2010, this year's Caregiver Conference features the theme: Skill Building through Education, Support and Communication.
The 2010 Caregiver Conference features presentations from Dr. Marwan Sabbagh, Dr. Matt Huntleman and Dr. David Coon among others. It promises to be an informative day of skill building, education and updates on the latest research and treatments for people with Alzheimer's disease.
Seating is limited so register today! Conference registration is $40 per person for family caregivers and $55 for professional caregivers. Professional caregivers also receive continuing education credits as a part of their registration. To register, contact Emily Nock at 602.528.0545 or via email at Emily.Nock@alz.org
For more information about the Central Arizona Caregiver Education Conference, visit http://www.alz.org/dsw.
Alzheimer's Association Caregiver Education Conference Provides Invaluable Education
From communication strategies to related dementias, caregiver stress to the latest updates on the state of Alzheimer's research and more, the 19th Annual Central Arizona Caregiver Education Conference is a day not to be missed! Taking place at The East Valley Institute of Technology on April 7, 2010, this year's Caregiver Conference features the theme: Skill Building through Education, Support and Communication.
The 2010 Caregiver Conference features presentations from Dr. Marwan Sabbagh, Dr. Matt Huntleman and Dr. David Coon among others. It promises to be an informative day of skill building, education and updates on the latest research and treatments for people with Alzheimer's disease.
Seating is limited so register today! Conference registration is $40 per person for family caregivers and $55 for professional caregivers. Professional caregivers also receive continuing education credits as a part of their registration. To register, contact Emily Nock at 602.528.0545 or via email at Emily.Nock@alz.org
For more information about the Central Arizona Caregiver Education Conference, visit http://www.alz.org/dsw.
Tuesday, September 29, 2009
Some promises can't be kept...and should never be made.
It's been one year to the day since the photo in the post below was taken...the last time I saw Pop. The PTSD from nearly seven years of caring for him 24/7 is still there as I said but through all of the therapy I've been through as well as all of the self induced attempts at sui-slide by massive quantities off dope of all descriptions...many attempts of again trying to do it (cleaning up)all alone just as I tried to take care of him without help I have FINALLY FOR THE FIRST TIME in a year been able to look at that photo without breaking down...without feeling like a failure because I lost it and couldn't care for him as I promised him I would do until he passed.
I have never told anyone what I'm about to tell you right now and it breaks an oath I made with Pop seven years ago while he was still in the hospital recovering from the initial stroke which has left him paralyzed ever since.
We were sitting outside Dell Webb Memorial in Sun City West...just the two of us...alone. He in a wheelchair and me sitting next to him on a picnic bench around sunset...a father and son who, for the preceding 25 years had for the most part been estranged having only seen each other a handfull of times yet were thrust back into each other's lives by a catosrophic health condition. The day he had his stroke I was living in Santa Rosa, CA and in the midst of setting up my own production facility to begin manufacturing my own line of custom bass guitars...something I had dreamed of all my life and I was on the cusp of making that dream a reality...then my phone rang.
Long story short...I flew over to Phoenix immediatly to be by his side at my mother's request and there we were sitting outside alone...
During the course of our conversation...alone...man to man...father to son he made me promise him on the souls of our ancestors in Heaven that I would never, ever allow him to be placed in a nursing home and that he would take his last breath at home and that I would close his eyes and mark the sign of the Cross on his forehead and send him to the next life. He then told me his final wishes for burial etc and I vowed to him that I would carry out those wishes to the letter and never, ever allow anyone to deviate from those wishes.
I flew back to Santa Rosa after that visit, dismantled the production facility which was nearing completion, sold off everything I could, packed up everything I owned and moved over to Sun City West and arrived one day before his release from the hospital on Thanksgiving Day. I spent the next six and a half years at his side every day caring for his every physical, emotional and spiritual need...the first six months I slept at his feet on the floor. I bathed him, fed him, helped him in the bathroom, dressed him, took him to every known specialist and therapist in the valley, excercised him, watched untold 100's of Mash reruns with him, argued with him, laughed with him, cried with him, even watched a war in the desert with him. We, in many ways, became one to a point where I lost myself. I lost my dreams, my friends, a nine year relationship with a woman I loved, I gave him everything.
Around the four year mark my mother also had serious health conditions requiring multiple surgeries and hospital stays and I split my time between both of them...still trying to be super son and do it all alone. Of my three older siblings, only my sister lifted a finger to help by flying out a few times a year to give me a week here or week there off from my daily duties but even those were no rest as I was still trying to maintain my guitar business out of the garage of a pink house on a cul-de-sac in Sun City West and while my sister was out I'd be flying to music industry trade shows and "working" so I litertally had not one day "off" from any responsibilities for many years. I spent many a night at my desk out in that garage after I finally got both parents settled down to sleep which generally was just before sunrise weeping alone in anguish and I began drinking heavily at first then using speed to keep going...first in my coffee...then snorting and finally smoking it. Having had many brushes with substance abuse in my past ever since I was tweleve as a matter of fact I was hooked right off the bat. I "managed" to keep this existence going through my growing addiction. About a six months into my heavy addictive period I was arrested and charged with multiple felonies, was facing trial and up to 15 years in prison if convicted and acccepted a plea bargain and placed on two years probation with random drug testing. I went to a private rehab for seven weeks as my sister came out and began packing my folks up and putting the house up for sale and shortly after I was released from rehab they moved back to NY with my sister and I was left here, unemployed, broke, living in a furnished studio apartment with a murphy bed in the wall and still on probation, forbidden to leave the state, just turned 50 years old and Pop was placed in a nursing home where he remains to this day...now down to 106 lbs, 87 years old, paralyzed and with increasing dementia. Mom is in an assisted living facility and my sister is helping them both daily while also caring for her 93 year old mother in-law in another nursing home, her own sons and grandsons and husband of 34 years.
That's about it...that really concludes the story almost...if you care to read on further then I invite you to start reading and following the next blog I started one year ago from about the point I ended this post.
I called it "A Divine Catharsis" and you can read it by clicking HERE
I have never told anyone what I'm about to tell you right now and it breaks an oath I made with Pop seven years ago while he was still in the hospital recovering from the initial stroke which has left him paralyzed ever since.
We were sitting outside Dell Webb Memorial in Sun City West...just the two of us...alone. He in a wheelchair and me sitting next to him on a picnic bench around sunset...a father and son who, for the preceding 25 years had for the most part been estranged having only seen each other a handfull of times yet were thrust back into each other's lives by a catosrophic health condition. The day he had his stroke I was living in Santa Rosa, CA and in the midst of setting up my own production facility to begin manufacturing my own line of custom bass guitars...something I had dreamed of all my life and I was on the cusp of making that dream a reality...then my phone rang.
Long story short...I flew over to Phoenix immediatly to be by his side at my mother's request and there we were sitting outside alone...
During the course of our conversation...alone...man to man...father to son he made me promise him on the souls of our ancestors in Heaven that I would never, ever allow him to be placed in a nursing home and that he would take his last breath at home and that I would close his eyes and mark the sign of the Cross on his forehead and send him to the next life. He then told me his final wishes for burial etc and I vowed to him that I would carry out those wishes to the letter and never, ever allow anyone to deviate from those wishes.
I flew back to Santa Rosa after that visit, dismantled the production facility which was nearing completion, sold off everything I could, packed up everything I owned and moved over to Sun City West and arrived one day before his release from the hospital on Thanksgiving Day. I spent the next six and a half years at his side every day caring for his every physical, emotional and spiritual need...the first six months I slept at his feet on the floor. I bathed him, fed him, helped him in the bathroom, dressed him, took him to every known specialist and therapist in the valley, excercised him, watched untold 100's of Mash reruns with him, argued with him, laughed with him, cried with him, even watched a war in the desert with him. We, in many ways, became one to a point where I lost myself. I lost my dreams, my friends, a nine year relationship with a woman I loved, I gave him everything.
Around the four year mark my mother also had serious health conditions requiring multiple surgeries and hospital stays and I split my time between both of them...still trying to be super son and do it all alone. Of my three older siblings, only my sister lifted a finger to help by flying out a few times a year to give me a week here or week there off from my daily duties but even those were no rest as I was still trying to maintain my guitar business out of the garage of a pink house on a cul-de-sac in Sun City West and while my sister was out I'd be flying to music industry trade shows and "working" so I litertally had not one day "off" from any responsibilities for many years. I spent many a night at my desk out in that garage after I finally got both parents settled down to sleep which generally was just before sunrise weeping alone in anguish and I began drinking heavily at first then using speed to keep going...first in my coffee...then snorting and finally smoking it. Having had many brushes with substance abuse in my past ever since I was tweleve as a matter of fact I was hooked right off the bat. I "managed" to keep this existence going through my growing addiction. About a six months into my heavy addictive period I was arrested and charged with multiple felonies, was facing trial and up to 15 years in prison if convicted and acccepted a plea bargain and placed on two years probation with random drug testing. I went to a private rehab for seven weeks as my sister came out and began packing my folks up and putting the house up for sale and shortly after I was released from rehab they moved back to NY with my sister and I was left here, unemployed, broke, living in a furnished studio apartment with a murphy bed in the wall and still on probation, forbidden to leave the state, just turned 50 years old and Pop was placed in a nursing home where he remains to this day...now down to 106 lbs, 87 years old, paralyzed and with increasing dementia. Mom is in an assisted living facility and my sister is helping them both daily while also caring for her 93 year old mother in-law in another nursing home, her own sons and grandsons and husband of 34 years.
That's about it...that really concludes the story almost...if you care to read on further then I invite you to start reading and following the next blog I started one year ago from about the point I ended this post.
I called it "A Divine Catharsis" and you can read it by clicking HERE
Saturday, September 26, 2009
It's been a year now...
This weekend marks one year since my sister moved my pop back east and thus ending my six and a half year run as my Pop's 24/7, live-in caregiver. He's in a nursing home with increasing dementia, still paralyzed and in poor health while my mom lives in an assisted living facility nearby with my sister living in between the too assisting with both. I miss him very much...
Wednesday, October 22, 2008
Been a while...lots has been going on!
Sorry it's been so long since I've posted folks but I've kinda had my hands full out here in the desert. I extended my stay out at The Sundance Center in Scottsdale from the typical four week stay to seven weeks and am very glad that I did. Through the course of my stay at Sundance I became aware of how deeply depleted I was of everything mentaly, physically and spiritualy at the end of my nearly six years as the sole live-in caregiver to first my Pop then in latter years my mother as well who underwent spinal fusion surgery earlier this year and a complete knee replacement this summer and also suffers from other progressive conditions as well...I had lost my very soul. I quite literally went mad through the process which well know eventually is a losing battle we can never, ever win in the end as much as we give, and fight, and do and don't and fight some more we can never stop the process of aging and it's ultimate eventuality. In the beginning I was johnny on the spot springing into action everytime he rang his litle wireless doorbell I bought him now six years ago; an act I later came to regret. I swear I will forever jump at the sound of a doorbell's "bing bong" for the rest of my life and the first thing I'll do if I ever buy another home is rip the damned doorbell out with my bare hands and install a door knocker! LOL
Who's with me on that one?? If not, trust me, DO NOT GIVE THEM A BING BONGER!!!! That's caregiver rule #1 ok?
Ok so, while I was in Sundance my sister was out from NY helping Mom with her post knee replacement recovery at home and running back and forth up to the Freedom Inn 20times a day becuase she foolishly replaced the "bing bonger" by giving Pop a cell phone so he could "bing bong" her via the remote airwaves from 2 miles away thus driving her mad in very short order to the point she and Mom stopped answerng the phone and let it go to the answering machine. I personally heard 27 separate messages being left by him in less than one hour one afternoon while I was out on pass from Sundance.
Caregiver rule #2 is DON'T GIVE THEM A CELL PHONE!!
Seriously, come up with some other means of communication other than a bing bonger or a cell phone or you will go frickin crazy!! Ok, so you got that?
If I'm 100% honest with you all I have to admit to chuckling a bit as I told my sister..."Ok, my pass is up...I gotta get back to Sundance before curfew...keep up the good fight!" as she sat there with her head in her hands about ready to pull her hair out getting a taste of what my life had been for the past six years, fulltime, every damned day and she's getting a taste of what it's been like and starting to lose it after only a few weeks. Lets not even talk about my two older brother's who each have only visited Pop once apiece during the entire six years for a few days each and never had to bathe him, feed him, dress him, cut his hair, q-tip his ears, trim his nails and literally be covered in every bodily fluid and excrement the human body produces on a daily basis. Do I sound bitter?? Nahh, not really but let's just say I no longer take ANY crap from my two "older" brothers about anything.
I "coined out" as they call it from Sundance on September 16th on my 50th birthday barely a "human being" again. Detoxed from a two year daily crystal meth addiction which started because I needed "something" in order to keep up with the folk's nearly 24 hour demands. At first I started just slipping a little bit in my coffee as a kickstart after being up until sunrise reacting to a steady serenade of "bing bongs" for a glass of water or depends change or to fix the cable on the TV because "somebody" hit the wrong button on the remote and the 4:00am "Mash" was comng on any minute!!!
Note: I hate "Mash" and that stupid "da doo da dee da dee dee" song!!! I'm also not too fond of "The Golden Girls" that was in constant rotation in the back bedroom either, in fact I haven't watched TV since I went into Sundance on July 29th other than a bit of the Olympics this summer....gotta love that women's beach vollyball eh guys?? LOL
Sorry, I digress, but I haven't had much of a social life these past 6 years either so forgive me.
Back to what's been going on. While I was wraping up my stay at Sundance I had regained enough self esteem to not only say no to going back to the way it was but I finally had to say "Hell no....I quit...I'm taking my life back!" and you have two options. Either you go into nursing homes or assisted living homes or get a live-in professional caregiver or move back to NY with my sister and she can take over but I'm not sleeping one more night in that house and that's all there is to it.
Note: They bought the very best long term nursing home care insurance known to man many years ago backed up with Medicare as well as a very good seconday healthcare insurance plan through both of their retirements plus an additional 1 million dollars or so tucked away for a rainy day so I informed them..."Guess what? It's raining and I'm packing".
So my sister packed up the house called the movers, got it painted inside and out and listed it for sale and drove them all the way back to upstate NY with the help of my nephew five weeks ago and I'm writing this at the age of 50 (just got my own AARP card to prove it!), living in a small furnished studio apartment, nearly broke, unemployed with a 6 year employment gap, still in private therapy once a week and 85 days clean and sober and starting to regain the life I lost six years ago this coming Thanksgiving Day.
It's not "over" yet and I'm sure I'll have more posts to come but I've got some stuff to catch up on out here....be well and I'll talk to you all soon.
Who's with me on that one?? If not, trust me, DO NOT GIVE THEM A BING BONGER!!!! That's caregiver rule #1 ok?
Ok so, while I was in Sundance my sister was out from NY helping Mom with her post knee replacement recovery at home and running back and forth up to the Freedom Inn 20times a day becuase she foolishly replaced the "bing bonger" by giving Pop a cell phone so he could "bing bong" her via the remote airwaves from 2 miles away thus driving her mad in very short order to the point she and Mom stopped answerng the phone and let it go to the answering machine. I personally heard 27 separate messages being left by him in less than one hour one afternoon while I was out on pass from Sundance.
Caregiver rule #2 is DON'T GIVE THEM A CELL PHONE!!
Seriously, come up with some other means of communication other than a bing bonger or a cell phone or you will go frickin crazy!! Ok, so you got that?
If I'm 100% honest with you all I have to admit to chuckling a bit as I told my sister..."Ok, my pass is up...I gotta get back to Sundance before curfew...keep up the good fight!" as she sat there with her head in her hands about ready to pull her hair out getting a taste of what my life had been for the past six years, fulltime, every damned day and she's getting a taste of what it's been like and starting to lose it after only a few weeks. Lets not even talk about my two older brother's who each have only visited Pop once apiece during the entire six years for a few days each and never had to bathe him, feed him, dress him, cut his hair, q-tip his ears, trim his nails and literally be covered in every bodily fluid and excrement the human body produces on a daily basis. Do I sound bitter?? Nahh, not really but let's just say I no longer take ANY crap from my two "older" brothers about anything.
I "coined out" as they call it from Sundance on September 16th on my 50th birthday barely a "human being" again. Detoxed from a two year daily crystal meth addiction which started because I needed "something" in order to keep up with the folk's nearly 24 hour demands. At first I started just slipping a little bit in my coffee as a kickstart after being up until sunrise reacting to a steady serenade of "bing bongs" for a glass of water or depends change or to fix the cable on the TV because "somebody" hit the wrong button on the remote and the 4:00am "Mash" was comng on any minute!!!
Note: I hate "Mash" and that stupid "da doo da dee da dee dee" song!!! I'm also not too fond of "The Golden Girls" that was in constant rotation in the back bedroom either, in fact I haven't watched TV since I went into Sundance on July 29th other than a bit of the Olympics this summer....gotta love that women's beach vollyball eh guys?? LOL
Sorry, I digress, but I haven't had much of a social life these past 6 years either so forgive me.
Back to what's been going on. While I was wraping up my stay at Sundance I had regained enough self esteem to not only say no to going back to the way it was but I finally had to say "Hell no....I quit...I'm taking my life back!" and you have two options. Either you go into nursing homes or assisted living homes or get a live-in professional caregiver or move back to NY with my sister and she can take over but I'm not sleeping one more night in that house and that's all there is to it.
Note: They bought the very best long term nursing home care insurance known to man many years ago backed up with Medicare as well as a very good seconday healthcare insurance plan through both of their retirements plus an additional 1 million dollars or so tucked away for a rainy day so I informed them..."Guess what? It's raining and I'm packing".
So my sister packed up the house called the movers, got it painted inside and out and listed it for sale and drove them all the way back to upstate NY with the help of my nephew five weeks ago and I'm writing this at the age of 50 (just got my own AARP card to prove it!), living in a small furnished studio apartment, nearly broke, unemployed with a 6 year employment gap, still in private therapy once a week and 85 days clean and sober and starting to regain the life I lost six years ago this coming Thanksgiving Day.
It's not "over" yet and I'm sure I'll have more posts to come but I've got some stuff to catch up on out here....be well and I'll talk to you all soon.
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