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

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...

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.

Full Circle

It's a beautiful Sunday afternoon following several nights worth of extreme Arizona monsoon thunderstorms which expemplifies the tulmultous developments in my family's lifecycle since my last post. After nearly six years of being the sole caregiver to my parents I hit bottom, total burnout....complete emotional, spiritual and physical breakdown. I have been in a holistic recovery center (The Sundance Center) now for the past month.

Pop has suffered several small TIA's affecting his speech and mental clarity, spent several weeks in Del Webb Hospital's SAGE unit (Support Adaptation Growth Enrichment Program), been diagnosed as having early stages of dementia and is now living at The Freedom Inn in Sun City West in his own studio apartment but not adjusting well to the transition despite the high level of facilities and care he is receiving. Anyway you shape it up, it's still not home.

Mom is still at home with my sister Kathy caring for her following spinal fusion surgery in March and knee replacement surgery last week.

Wellshpere Network Addition!

I'm very pleased to announce that "A Caregiver's Silence" has been noticed and I was contacted by Geoffrey W. Rutledge MD, PhD and asked to add "ACGS" to the Wellsphere Network's family of health related blogs! Wellsphere builds online healthy living communities that help people ‘Get active, Eat better and Unwind’. Wellsphere’s groundbreaking platform works by connecting each member with local health and wellness resources, classes and activities that match their unique interests and goals, and with the personalized advice and social support they need to sustain healthy habits. The company hosts a public website for consumers at http://www.wellsphere.com and creates proprietary communities (such as BeWell@Stanford) for large organizations seeking to improve the health and well being of their members and reduce their healthcare costs. Wellsphere is headquartered in San Mateo, California.

I am very flattered and excited about this new collaboration and welcome new readers coming onboard through Wellsphere!

Important Web Links

I'll be sifting through these and checking them and adding one by one to the links section to the right but wanted to post these us now for those who may need them:

Aging

Ageworks - provides graduate and undergraduate education over the Internet, an informational website on aging and continuing educational modules for professionals working in long term care.

American Geriatrics Association - one of the largest professional organization of health care providers. Includes membership, educational and publication information.

American Society on Aging - Enhancing the skills and knowledge of those working with older adults and their families.

Families USA - a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for Americans. Good information on national healthcare policy.

Gerontological Society of America - multidisciplinary society for professionals in the field of aging. Focuses on promoting the scientific study of aging.

International Longevity Center - a non-profit, non-partisan reseach and education organization helping societies address longevity population aging in postitive productive ways.

Maturity Health Matters - an online newsletter about U.S. Food & Drug Administration (FDA) regulated products for older adults, their families and their caregivers.

National Citizens' Coalition for Nursing Home Reform - a national consumer advocacy group that educates consumers about how to get good care in nursing homes and advocates for policies that will improve conditions for nursing home residents.

National Council on the Aging - help older people remain healthy and independent, find jobs, increase access to benefits programs, and discover meaningful ways to continue contributing to society.

National Institute on Aging - research profiles, funding, health information and publications.



Caregiver Resources

Arch National Respite Network and Resource Center - supports service providers and families through training, technical assistance, evaluation, and research.

Caregiver.com - articles on caregiving, caregivers, and home care workers.

CARING TODAY - a magazine and website—provides useful advice and how-to articles on range of caregiving topics.

StrengthforCaring.com - a comprehensive online resource and community for family caregivers.

WellSpouse Foundation - national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.



Directories and Resource Locators

Benefits Checkup - helps thousands every day to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Directory of Web and Gopher Sites on Aging - from the Administration on Aging's Department of Health and Human Services.

Eldercare Locator - a nationwide, directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans to help them remain independent in their own homes.

GetPalliativeCare.org - a palliative care resource created for patients and families that also includes sections for medical practitioners and policymakers. The site is easy to navigate and provides clear, comprehensive palliative care information for people coping with serious, complex illness.

GeroInformatics Workgroup at the Wayne State University's Institute of Gerontology - resource for researchers, educators, practitioners, and others interested in aging and older individuals.

National Academy of Elder Law Attorneys - search for an elder law attorney near you.

National Association of Professional Geriatric Care Managers - a non-profit, professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.

Senior Sites - source of non-profit housing and services for seniors.



Disease Specific Organizations


ALS

The ALS Association (National) - up-to-date information and education materials on ALS.

Alzheimer's Disease/Dementia

Alzheimer's Association - site with updated research information, chapters, caregiver information and public policy information.

Alzheimer's Disease Education and Referral Center - site with Alzheimer's information, research, and caregiving suggestions.

American Health Assistance Foundation - nonprofit charitable organization that has dedicated over 30 years to funding research on age-related and degenerative diseases, educating the public about these diseases, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.

Lewy Body Dementia Association - information for patients with Lewy Body Dementia and their caregivers.

Pick's Disease Support Group - articles, support groups, and resources for patients.

Ataxia

National Ataxia Foundation - information about and support for people with ataxia.

Brain Injury

Brain Injury Association of America - national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury.

Brain Injury Resource Center - information, skill-building and discussion groups. Extensive links to resources, rehab, and research sites, as well as lay and professional journals.

Defense & Veterans Brain Injury Center - Serves active duty military, their dependents and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.

Tamara Greenspan Head Injury Collection - Free resource library, with many good books on brain injury available through the interlibrary loan system.

The Traumatic Brain Injury Model Systems - created to demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care and conduct innovative research on all aspects of care for those who sustain traumatic brain injuries.

Brain Tumor/Cancer

American Brain Tumor Association - Provides information about brain tumors, treatment options, clinical trials, and living with a brain tumor.

American Cancer Society - dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering.

CancerCare - resources and information related to costs for caring for those with cancer.

Cancer.com - a web resource for people touched by cancer including patients and their families, caregivers and health providers. The site was developed as part of Ortho Biotech's dedication to cancer research and education. Cancer.com was created to facilitate quick and easy searches for cancer information and includes a comprehensive listing of credible cancer web sites. The site content is reviewed and approved by an advisory board of cancer advocates and medical experts.

National Brain Tumor Foundation - non-profit organization serving people whose lives are affected by brain tumors.

National Cancer Institute - official site for the National Institute of Health's principal agency for cancer research.

StrengthforCaring.com - online resource and community for family caregivers.

Cerebral Palsy

United Cerebral Palsy Association - world's premier gateway to disability resources on the Internet and is a network for people with disabilities,

Creutzfeldt-Jacob Disease

Creutzfeldt-Jacob Disease Foundation - offers support, information and guidance to those dealing with the degenerative neurological disorder CJD.

Epilepsy

Epilepsy Foundation of America - serving people with epilepsy and their caregivers through services, information.

HIV/AIDS Dementia

National Prevention Information Network AIDS website -HIV InSite - university-based, global Internet resource on HIV/AIDS that incorporates comprehensive,multidisciplinary information on basic science, treatment, prevention, and policy, and is one of the world’s most visited

HIV/AIDS Web sites.

Huntington's Disease

Hereditary Disease Foundation
Huntington's Disease Society of America, Inc.

Hydrocephalus

Hydrocephalus Association

Multiple Sclerosis

National Multiple Sclerosis Association of America
National Multiple Sclerosis Society

Parkinson's Disease

American Parkinson Disease Association, Inc.
National Parkinson Foundation

Spinal Cord Injury

Christopher Reeves Paralysis Foundation
National Spinal Cord Injury Association

Stroke

American Heart AssociationNational CenterAmerican Stroke AssociationNational Stroke AssociationNational Institute of Neurological Disorders and Stroke
Tourette's SyndromeTourette's Syndrome Association, Inc.

Other Disease RelatedAlliance of Genetic Support GroupsAmerican Academy of NeurologyAmerican Chronic Pain AssociationHuman Genome Project InformationNational Institute on Deafness and Other Communication Disorders



Elder Abuse
MedlinePlus: Elder Abuse - trusted health information on elder abuse from the U.S. National Libarary of Medicine.National Association for the Prevention of Elder Abuse - information and publications on how to recognize and report elder abuse.National Center on Elder Abuse - offers fact sheets, news, publications, statistics and resources.
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Federal Government Agencies
Administration on Aging - aging news, aging pages, funding information, Older American Act programs, statistical information on older adults.Centers for Disease Control and Prevention's National Center for Health Statistics: Aging Activities - an agency of the United States Department of Health and Human Services.Centers for Medicare and Medicaid Services - the federal agency that administers the Medicare, Medicaid and Child Health Insurance Programs.Department of Veterans Affairs - Veterans Administration benefits, facilities, special programs.Food & Drug Administration's Office of Women's Health - science-based information about all products currently approved by the FDA to treat women's health conditions.Social Security Online - information about benefits, Personal Earnings and Benefit Earning Statement.National Institute of Health - Health Information Index, Consumer Health Information, Medline and Grateful Med access, Clinical Alerts.National Institute of Mental Health - provides information from the Federal agency that conducts and supports research on mental illnesses.



Health Resources
Alliance for Health Reform - a nonpartisan, nonprofit group helping educate elected officials, journalists and other shapers of public opinion about the roots of the nation’s health care problems and the trade-offs posed by various proposals for change.ClinicalTrials.gov - comprehensive registry of clinical trials for serious illnesses. Sponsored by the National Library of Medicine, the database has 4,000 studies at 47,000 sites across the country.Healthfinder - a mega site for health information sponsored by the Department of Health and Human Services. Excellent links section.MEDLINEplus® - comprehensive coverage of over 600 health topics. Features include: newswire updates, tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals, and more.MedicineNet - information for diseases, treatments, procedures, drugs and more.National Organization for Rare Disorders - a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.PubMed - provides access, free of charge, to MEDLINE. Over 40 millionsearches done each month. Includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.



Legislation and Advocacy
National Governor's Association - bipartisan organization of the nation's governors--promotes visionary state leadership, shares best practices and speaks with a unified voice on national policy.Thomas - federal legislation tracking. Daily updates and full-text bills available.White House's ExpectMore.com - developed by the U.S. Office of Management and Budget and Federal agencies to assess the performance of every Federal program.White House Citizen's Handbook - a guide to the U.S. government.



Long-term Care
American Association of Homes and Services for the AgingHome Care and Hospice Agency LocatorNational Long Term Care Ombudsman Resource Center



Technology
Center for Accessible Technology - provides useful information on various types of technology as well as comparative reviews, and links to other resources.EASI (Equal Access to Software and Information) - provides information on assistive technology as well as links to product information. Virtual Assistive Technology Center - information on resources and also offers downloadable software.BIOTN (The Best Information on the Net) - site developed by librarians at O'Keefe Library at St. Ambrose University. The site offers information on adaptive technology, disability law, organizations and institutes and links to other useful sites.
Computer manufacturers also have sites that offer information on accessible technology. Some of the larger companies include Apple Computer's Disability Resources web site and Microsoft's Accessibility and Disabilities site.
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First Steps for New Caregivers

When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance, and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in a loved one's health.

Now it's time to take action, and take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better.

Step 1

Start with a diagnosis. If your loved one is forgetful at times or has gone through a noticeable personality change, take him or her to a neurologist or diagnostic clinic. A thorough evaluation will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication or infection. An early diagnosis of Alzheimer's disease, or another disease that causes cognitive impairment, has many benefits. First, treatment for Alzheimer's disease is most effective in the earlier stages and can buy more independence for your loved one. Second, knowing your loved one's diagnosis can help you plan ahead realistically. Learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia'learning about the diagnosis will help you keep in mind that it's the disease that is causing your loved one to gradually lose control over his or her behavior. Many books, videos and classes are available to inform you about what you can expect as your loved one's disease progresses.

Step 2

Talk with your loved one about his or her finances and health care wishes. If your relative is able to complete a Durable Power of Attorney for finances and health care, assist her or him in meeting with an elderlaw specialist to draw up these documents. This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options.

Step 3

At this stage, consider inviting family and close friends to come together and discuss your loved one's care. If possible, your loved one should be included in the meeting. List the tasks that are needed so they can be more easily divided up. Let everyone discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. For more information see the FCA Fact Sheet called Holding a Family Meeting.

Step 4

Take advantage of community resources such as Meals on Wheels and adult day care programs. These resources are available so that you don't have to do everything yourself'and to give you a break. You can also see if there are caregiver classes and workshops offered in your community by calling FCA or your local Caregiver Resource Center or Area Agency on Aging. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one.

Step 5

After all of this planning, don't forget what's most important: finding support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. A support group is a good place to meet other family caregivers who have really "been there". You can attend support groups in your community, as well as through the Internet. Call FCA at (800) 445-8106 to learn about support groups, classes and other services for caregivers in your area, or visit www.caregiver.org.

Source: Family Caregiver Alliance