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Because We Care - an online eldercare guide

AoA

An online resource guide for the growing number of Americans who are caring for an older family member, adult child with disabilities, or older friend. This Guide provides information and a range of suggestions to make caregiving easier and more successful--whether you are the caregiver or the person who ensures that your family member or friend receives the best possible care from others. Since this Guide contains many links to outside references, the online html version is recommended; for better printing, a PDF version is available also.

Introduction

If the last century is any indication, we are headed for exciting times in the decades ahead. There will be new technologies to make our every day lives easier. We can expect breakthroughs in medical research that will astonish us and give millions more hope for healthy, longer lives. And, if there are as many advances in international and community relations, hopefully we will also see a more inclusive embrace of humankind.

All of these developments will be good news for the nation's millions of family caregivers. Assistive devices are already saving many caregivers from placing their own health and well-being at risk, but there are many day-to-day activities that remain difficult to complete without some kind of assistance. There also are diseases like Alzheimer's, Parkinson's, cardiovascular disease, and diabetes for which cures or preventive measures are desperately needed. Here is where the kindness and love of family, friends, and neighbors have made the difference for so many older persons and their caregivers.

We, at the Administration on Aging, have met and talked with hundreds of family caregivers from across these United States. Their experiences have left an indelible impression in our hearts and minds. What they have shared with us, about the extraordinary gifts of love they are giving older relatives and friends in need of care, inspired us to offer Because We Care: A Guide for People Who Care.

So many family caregivers have said that they wish they had known more about how to provide care, about the resources that exist, about how to get help for their loved ones and themselves, about what they can do to be sure that their own quality of life is optimal. So many family caregivers have said that future caregivers need to have the opportunity to understand caregiving and its dimensions ahead of time, in order to be prepared for the challenges that may arise. So many persons receiving care have said that they are concerned about the health and well-being of their caregivers.

To each and every one of you who is or may be a member of the community of caregivers, we dedicate this guide. We respect and acknowledge your love and your dedication. The guide is yours to use. We hope that it will be of help... because we care.

Preface

Because We Care: A Guide for People Who Care is being offered by the U.S. Administration on Aging (AoA) as a resource guide to the growing number of Americans who are caring for an older family member, adult child with disabilities, or older friend. This Guide provides information and a range of suggestions to make caregiving easier and more successful--whether you are the caregiver or the person who ensures that your family member or friend receives the best possible care from others.

Because We Care recognizes the wealth of information which can be accessed by caregivers via the world wide web. It organizes the information to address particular aspects of caregiving. To access web-based information, just click on the text words or phrases that are highlighted. Where information is not yet available at other web sites, we fill the gap and provide you with information.

We have listed web sites that offer a range of information that caregivers can use. However, references from this AoA web site or from any information services sponsored by the AoA to any non-governmental entity, product, service or information does not constitute an endorsement or recommendation by the Administration on Aging or any of its employees.

The AoA is not responsible for the contents of any of the "off-site" web pages referenced. While the Because We Care Guide includes links to sites that may reference other information, the Administration on Aging does not endorse ANY specific products or services mentioned. Full responsibility for any use of these links rests with the user.

Because We Care will continue to expand and evolve. Thus we invite you to revisit this site from time to time. We'd also like to hear from you. Feel free to tell us what you find useful and what additions you'd like to see in future editions of Because We Care.

How to Contact the Administration on Aging (Telephone, Fax, Mail, E-Mail):

  • E-Mail AoA at: aoainfo@aoa.gov
  • Mailing address: Administration on Aging, 330 Independence Avenue, SW, Washington, DC 20201
  • To find services for an older person in his or her locality, call the National Eldercare Locator at (800) 677-1116 9:00 A.M. to 8:00 P.M. Monday-Friday, EST
  • For media inquiries, telephone: (202) 401-4541

Foreward

Because We Care: A Guide for People Who Care is being offered because fully one-fourth of American families are caring for an older family member, an adult child with disabilities, or a friend. This guide offers you a range of suggestions to make caregiving easier and more successful, whether you are a caregiver or the person who ensures that your loved one receives the best possible care from others.

Caregiving takes time, effort, and work. It can challenge you intellectually and emotionally, teach you flexibility and strengthen your problem solving abilities. Over time some care receivers recover and/or improve. If so, this can be very satisfying, but even when those being cared for are not able to improve, your efforts are enhancing the life of someone you care so much about, someone you love.

We asked members of our Administration on Aging staff to share some of their own caregiving experiences with you. These experiences are testaments - testaments of love, devotion, and, yes, grief. Being a caregiver, as their stories indicate, is far more than a role. It is more often an act of love. These testaments are shared below.

Their Story

In March of 1997 my sister and I drove to Ohio to help our mom and dad in the aftermath of my mom's knee replacement surgery. Our parents lived 360 miles from us, in the same house where we grew up. Little by little we saw that things were not going as smoothly as we'd thought, and our mom and dad would fill in for the other when weaknesses arose. Somewhere along the line our dad had stepped away from taking charge, making hard decisions, and following up with the doctors. Now this role was to be taken up by his children.

Four months later we faced another acute care situation. This one involved my mother's open heart surgery--one that took us through extremes--from hope to despair, from weakness to strength, from anger to faith, but always, always, involving love. We literally dropped everything else in our lives and went home to Ohio for eight weeks.

I was surprised to find that I was a much stronger person than I had thought I was. I was decisive, assertive, tenacious, and resourceful-- all qualities in which I quite often feel lacking. I had always felt myself to be compassionate, but I was amazed at how little I felt I was really giving to my mom. Rather I was grateful to have had the chance to continue receiving the love she had shown me every day of my life.

As my mom overcame one crisis after another and there seemed to be hope for a recovery, I had all the worries of her well-being added to by thoughts of "How will we maintain their dignity while doing what we think is best?" Though these haunting, fleeting thoughts added to the stress we already were under, I know my sister and I would have given anything to have had to confront these challenges, had it meant that our mom would have been with us longer.

Now that our mom is gone, my sister and I (and our husbands and children) find ourselves involved in the long-distance caregiving of our dad--one mainly of emotional support. I know that one day the physical aspects of caregiving will present themselves in his case. I only hope that that day is a long way off, because when I lose him, I will lose my mom all over again. Having our dad to worry about has given us something to be responsible for, and by comforting him we suppress our own emotions. When he is gone, all those emotions will flow forward, I'm afraid.

Her Story

I was my father's caregiver from 1988 to 1998 when he died. He lived in our family summer home, a 200-mile round trip from my home.

My caregiving began with an IRS problem. He called me when he received IRS and State documents dunning him for taxes he had not filed since 1971. I reconstructed his documents from drawers and cubby holes, re-filed, and was able to negate the penalties and get him over $3000 back in senior citizen property tax rebates. From that point on he handed over most of his financial transactions to me. As time went on, he agreed to let me drive him to doctor appointments. Meanwhile, on my monthly visits, I noticed he was not paying his bills on time. I offered to take that over too. In time, I took over his grocery shopping and laundry too. More time went on and I noticed he was not washing or cleaning. I upped my visits to twice a month and then once a week. There were "crashes", and so many crises, followed by periods of stabilization. This went on for 5 years.

The last 5 years of my father's life were exceptionally difficult for me. Little by little, I gave up my life to tend to his needs and still hold on to my job. I fought with doctors, with other caregivers and with him. My life was almost entirely consumed with trying to hold my job and keeping him afloat.

My two siblings said they cared deeply for our father but lived in other parts of the country. My older sister, a schoolteacher who lives in Florida, helped in the summer and then went back to her own life. My younger brother fled, saying he was unable to deal with his issues with his father. I understand this as my father could be a very difficult man. But why did they abandon me, too?

I have many friends. Oh, they were sympathetic and understanding but it was clear that this was my problem. Now I know that I failed them by not telling them specific things I needed them to do to help me--simple things like mow my lawn, take in my mail, make a few calls. In the end, I realized I gave them nothing to do other than call me.

I get paid for doing a job. Yet, sometimes, I really hoped for more support. It was my dream that one of my co-workers would just volunteer to take over an assignment for me. It did not happen because I DID NOT ASK. Maybe they never really knew how hard and time intensive all of this was. I have always been so very conservative with my leave and it was evaporating in huge chunks.

There is one thing I still have anger about. I was so totally engulfed with the sheer mechanics of dealing with the hired home caregivers, the doctors, the paper work, the decisions--I did not have the opportunity to recognize what was going on. I was losing my last parent. My father was leaving this life and I was so concerned that he was always dignified and considered a person that I lost my chance to really understand what this meant to me. Two years later, I still grapple with this.

Getting the information I need was so very frustrating. Here I was in the business of older persons and I struggled to find basic information about alternatives, not financial aid, but alternatives. I can remember calling the Michigan AAA in tears and asking the Director what to do. I told him I couldn't think right anymore. "THIS WAS MY FATHER, please help me." I was so ashamed to fall apart. He gently said, "The same thing happened to me with my mother," and he told me what to do. We want to know the options, but when you are so emotionally involved, sometimes you just want someone to tell you what to do. Making these decisions for your incapacitated parent are FAR WORSE than having to make them for yourself--FAR WORSE. All historical issues dissolve--all you want is for them not to hurt him more, help him, keep him dignified and keep him safe.

The end comes when you don't expect it and then, that's it. The family gathers. It is more than likely that you are the ONE, the caregiver, to make all arrangements for this last goodbye. They stay at your house, eat all your food and fuss over what is going on. You are WIPED OUT but no one seems to give this a thought, thinking you can still carry the ball. And you do. After you put them on their planes, there you are. You pay the bills. Their lives are hardly unchanged while yours has changed dramatically, which leaves you reeling. You would not have done anything otherwise. Or would you?

It has been just about two years and I feel I am just now coming up for air. Ten years is a long time. I lost all of my 40s to caregiving. I regret none of it. I regret none of the caregiving and the miles on the road and the loss of what we call a personal life. That was my life. It yielded riches my siblings will never know. I walked our Dad out of his life with the most dignity I could muster at the time. But sometimes, I wish I had been kinder, less critical and demanding of everyone involved. Who knew it would end in what seemed to be (even after all those years) so abruptly? I never would let myself think that way. I look at a picture of us taken a month before he died and see how withered he was. I wonder, what was I thinking of? But more than anything, I wish I would have had more time to spend with him those last months. I had to work. I visited him at the Vet's home (60 miles from my house, a TRULY WONDERFUL PLACE) in bits and snatches.

In the end I feel remarkably privileged to have been given the gift of caregiving. I did not welcome it. I resisted it. I often treated it poorly, but I learned far more about life than I ever could have imagined. If I could go back, what would I do differently?

  • Accepted the responsibility as a special gift and a privilege rather than a trial.
  • Given friends and family members definite, specific tasks to help me.
  • Taken more time off from work, including leave without pay.

Who knew it would end so soon? I honestly thought we had at least a couple of years, he was doing so very well at the Vet's home. Now, I am crying too. That's good, I never had the time to cry when I was going through it.

Just Tell Me What You Want Me to Do

As a caregiver, one of the most important lessons that I learned was to be specific about the kind of assistance we needed from family and friends. "Just tell me what you want me to do," was a constant refrain. It was always hard to identify something in response to that question. As a result, I passed up many chances to get help with simple tasks that others could have very easily performed. Often, my lack of specificity led people to come up with their own way of making a contribution--like washing clean dishes, dusting and vacuuming places that did not need it, and watering plants that were already struggling to overcome excessive care and feeding. But when it came to personal care--like bedpans and diapers--even those who asked to help were no where to be found.

All families have a history, a culture, a way of relating to each other which is uniquely "their way." In our family, there was no question about who was in charge. Mom maneuvered, manipulated and marshaled everyone within her span of control. That was one of the reasons the loss of control over her life was so difficult for her. As caregivers, we had to learn that doing everything for her was not always the "best" for her. Allowing her to recognize her own limitations and choose her own solutions was often a much more rewarding experience for all.

My father was the primary caregiver for his wife. Mom's illness had really been hard on him. More stressful then we knew. It was 10:30 one hot July evening when I received a call from my mother. "They have just taken your father by ambulance to the emergency room. He blacked out. He may have had a heart attack."

When we arrived at the hospital, we found that he was not in pain but being admitted to the hospital for observation and tests. We never got a clear understanding of what caused the blackout, but Dad was deemed medically OK to return home after a week. What he really needed was a break. And since he would not take it on his own, his body found another way to get some rest.

The Sandwich Generation

Mom is 74, married and lives in New Jersey. She was forced to retire at 62, got seriously depressed, and then took wonderful care of my Grandmother, who became frail at 98 and died at nearly 100. Soon after, my Mom developed emphysema caused by 50 years of cigarette smoking. Mom returned home with oxygen, a visiting nurse and an attendant.

All of this help was not enough to take care of everything, so I dropped my life and went to New Jersey. I left my job, my husband and three school-aged kids. I worked very hard for 3 weeks to take care of all the arrangements, medical and otherwise, to ease my Mom into self-sufficiency, to prepare the house and refrigerator for the long winter. The psychological issues and the loss due to illness by my Mom and step Dad were very difficult. I, who hate to cook, prepared 3 months worth of frozen meals with some fancy recipes. I shopped till I dropped. On the last day, we invited one couple over and celebrated my Mom's 73rd birthday. She was getting better. I forgot to tell you that I am the only daughter, a 50 year old, very sandwiched.

P.S. There is no happy ending. My Mom is stabilized and although she still smokes, and is still somewhat depressed, she was doing quite fine managing everything. Unfortunately, my Step Dad got a rare disease that has disabled him. He was 6 months short of 65 and retirement. He is down to 128 pounds at 6 feet tall, depressed, and can't walk, and who do you think is doing everything? My mom is taking care of his dressings, his medication, the paperwork, medical arrangements, specialists, the home and is permanently exhausted. They were supposed to move to Oregon in May 2000 and start their beautiful retirement and here is this situation with prognosis unknown.

In this case, no government program can help. Everything that is in place is fine. I worry night and day. I am still the only backup in case my Mom gets sick again. Believe me, I keep it in the back of my mind as I stare at my annual leave and sick leave

Mom and Me

I am an only child and an only grandchild who was always showered with love and attention. I don't want to lose that. My mother is the last of my close family. When she goes, I will have lost my family.

My heavy-duty caregiving began abruptly. My mother was in the hospital. I remember that night. She was going home in two days. She looked so good, so young. The following day I went to see her. She was sitting by the window, dressed in a hospital gown. Food was strewn across the floor. I looked at her - this suddenly old, confused woman. I studied her eyes and I knew. I turned to the nurse and said, "This woman has had a stroke. Call a doctor." My mother's physician was called. They began a course of physical therapy immediately.

Day three of the stroke, I offered to take my mother to the bathroom. She could no longer walk. No longer stand. The nightmare had begun in earnest. My mother drifted in and out of consciousness. My stomach tied in knots, my blood pressure soared, my pulse hit 123 and stayed there. I continued to come to work. I don't think that anyone understood. I was facing the loss of my mother - the last of my family. She stabilized. Friends came. They kept me from coming completely unglued. Some cousins came too.

My mother improved. She was no longer confused. She could talk. How very thankful I am for that. She was moved to a nursing home for more physical therapy. She made some more improvement. She hated the place. She begged to come home. I began to make plans. I learned how to do transfers. They cautioned me. "Are you sure you know what you are taking on. Your mother is a total care patient." I assured them that I did. I brought her home.

For the next six months, I slept beside her. Physical therapists came in, home-health aides came in, a friend turned part-time caregiver took over when no one else was there. At night when I got to her house, I made her do exercises. She hit me, pulled my hair, cried out in pain as I straightened fingers that were curled into a clinched fist from contractures. During that time I got about four hours sleep a night. Even if she didn't wake me, I'd wake in the middle of night and sit at the kitchen table - smoking one cigarette after another.

There was no bedroom or shower on the first floor. So we bathed in the powder room using containers of water and she slept in the living room. Finally, the physical therapists said, "We have done all that we can do. She is no longer making any improvement." The Medicare payments stopped.

Now, we were fully on our own. The area agency on aging told me that my mother's income was too high to allow for any help. I hired a full-time live-in aide, using the money that my father had worked so hard to accumulate. She lasted five months. She was the first of many who came and went - some good, some not.

During the first years following the stroke, I suffered a series of illnesses which were, I am sure, brought on, in part, by the emotional stress. I must admit that I would have given anything to have someone reach out to us - to offer to help in any way at all, but this did not happen. I asked friends if they would visit my mother but they never came unless expressly invited for some event. Some of them, I am happy to report, have returned the favor and invited us for dinner and even to the beach.

I've been at this for 6 years now. Every night after work I drive to Mom's house, eat dinner with her, talk to the caregiver, take care of the pets, and do little and big things around the house that I am afraid to ask the caregivers to do.

We have parties on every holiday because neither she nor I want to sit there with no one to share them with. I try very hard to make things seem normal when, in fact, they are not. I don't want others to know that my mother is incontinent. I don't want them to know that it takes an hour and a half of work to get her bathed, dressed, and into the wheel chair in the morning - that she no longer understands how the various parts of her body are supposed to work.

Two years ago, at her urging, I bought a larger house with the last of the investment money so that she could have a room of her own. I turned the dining room into a bedroom, put in a wheel chair accessible bathroom, and turned the upstairs bedrooms into three small rental units that produce enough income to cover the mortgage.

Were it not for the caregivers we have hired, I don't know what I would do. They make it possible for me to keep on working and to have some life of my own--to go to my home and husband albeit late at night. I have worked very hard to keep my mother from going under financially. This illness has cost over $200,000 out of pocket. I have converted her mutual fund investments into rental investments that provide a fairly reliable income and keep pace with inflation. I serve as property manager, rental agent, cleaning lady and Ms. Fix-it for the properties.

There are times when I feel overwhelmed, yet I wouldn't have it any other way, because I know that my efforts allow my mother to remain at home where she wants to be. My mother has always been there for me with her gentle selfless love. Now it is my time to be there for her.

Because we are "walking the walk" and because we care, we offer this guide for all caregivers.


Sourced from "Because We Care: A Guide For People Who Care", published by the United States Administration on Aging.

Disclaimer: References from this web page or from any of the information services sponsored by AoA to any non-governmental entity, product, service or information does not constitute an endorsement or recommendation by the Administration on Aging or any of its employees. AoA is not responsible for the contents of any "off-site" web pages referenced from this server. Although our page includes links to sites including or referencing good collections of information, AoA does not endorse ANY specific products or services provided by public or private organizations. By using this site, the user takes full responsibility for any use of these links.