Caregiver Stories

The following are true stories sent in by today's caregivers.

My mother-in-law was diagnosed with end-stage breast cancer. It is all through her body. She has chosen to fight with chemotherapy. However, we are all part of this fight. When she got sick we found out that she could not pay her bills. She spent all of the money that Dad and she had. Within a week I moved my children (ages 11, 10, and 9) to her home as it was bigger with a first floor set up. My home is now up for sale. There are no other family members to help, just my husband and I. Our lives have totally changed. She is not only dying from cancer but she has insulin-dependent diabetes. I work full-time at a school, it is so hard. We are doing the best we can. Some days I wonder if I can get through another day of chemo, medications, cleaning up, mothering my children, cooking her meals, etc. I wonder how caretakers cope. I also lost my father in November and don't even have time to grieve him.

Lori Davies
daviesrl220@yahoo.com

I have been dealing with Alzheimer's for the past 10 years, first my mother and now my father. They are both in a nursing home. They share the same room. I have been handling all the burden including taking care of the bills of their home till I sold it this past Devember. I would like information on coping with this situation and planning for the future.

Diane Smearman
dlsmearman@aol.com

Well, I'm in a little bit different situation. My mother was diagnosed with MS before they decided to concieve me many many years ago. I was just searching the web for any type of caregiver-only support group.

Anyway, we have been through SO MUCH in 27+ years. It's easy to get down and out as I am today (Momma just went in the hospital again last night. It was also the night I was trying to let go of my fear. I'm afraid that if I go out and enjoy myself, something bad will happen to my mother. Everyone thinks it's crazy....)

But no matter how hard it gets for me on my end, I remember how much harder it must be to be them. Unable to function the way they were. Feeling like a burden to those they love, knowing there is only worse to come. It's very hard for us, it's mucher harder for them.

Bona Dea
bonadea99@hotmail.com

Dignity. What is it? The word has lost its meaning with use. As a caregiver, I see the word splashed colorfully to advertise everything from incontinence care to the wishes of the dying. At a recent caregivers expo, I inquired about the many display ads boasting "we Protect Dignity." The booth attendants were usually taken aback at the question. Our exchange would go something like this: "What do you mean here.. this statement regarding dignity?" "Well,.. we treat our clients with dignity." "How?" I'd ask. "Well? we are nice to them.. uh, we believe dignity is important." "Oh? In what way?" I ask again. I smile as I hear the same buzz words repeated without the specifics: Respect, personal privacy, and the big "D" word, dignity.

Let's face it. Dignity is easier to define when you lose it. Just ask anyone who's familiar with the dreaded ADLs. Those activities of daily living can be spelled out Another Dignity Lost. I witnessed the drama played out with the variety of health aides visiting our home during my mom's illness. In hushed tones the necessary details are exchanged regarding her therapy and personal care. After the rubber gloves are tossed and the paperwork signed, there's a pause before the words come. Mom speaks softly. "I don't like that. Would you like it if she took you in the shower?" Another piece of the dignity puzzle is removed.

Before it's taken away or "lost." How did it get there in the first place? I personally believe we all are born with it. "It" being that treasure deep within, the invisible value of our being. Our parents and family reinforce we are worthy of the attention and time they invest for our continued existence. I hold on to the belief that our value is God-given, as one with a purpose, a destiny to fulfill. I also have been taught that God gives us free will, to make the choices along the way. Without the freedom to choose, our dignity cannot find expression. Remember the childhood chant that was sing-songed, "Bear the pain or bare the shame"? I don?t know about you, but I would pick pain any day. The thought of anyone hearing, viewing, touching or whiffing any part of my delicate humanity would cause me to shudder. My body belongs to me. It is my personal private property.

My clothing not only covers me, but also offers me identity. And you thought only my voice speaks! My clothes say a lot. Just ask those who counsel job interview hopefuls. Power ties, suits, and accessories can help hide inexperience and timidity, while a missing button or stained shirt may cause genuine character strengths to be missed. Our wardrobe picks affect on how we feel about ourselves. But what comes first, the dignity or the clothes?

While visiting my mom's rehab facility, I noticed legal statutes protecting the dignity of the residents there. It gave them a right "to be treated courteously, fairly, and with the fullest measure of dignity." But how? The closing of a door or curtain may be a kind and necessary gesture, but would I be happy if my doctor or health care professional only closed a door? However inadequate, I am grateful for the "cover" they give me. The idea of a choice in the matter seems ridiculous. Let's imagine the health care professional and patient dialogue. "Would you care for a cover today?" "Oh no thanks, I'd rather be exposed. Thanks very much." The irony of this reply speaks volumes for dignity. Even with the "no'" the patient is offered a choice and so is offered dignity.

Sadly, for my mom, a six-week visit to a re-hab facility offered her no choice in the matter. To my amazement, there had not been one type of "cover" designed for those needing help with personal hygiene. No styles, designers, or boutiques suiting the birthday suit.

This frustration led to a personal quest for a solution to this troubling problem. A garment to be worn in the shower and during transitional clothing changes would be designed. A first of its kind dignity garment evolved. From two worn hand towels safety pinned together, to a functional and attractive personal care accessory, the Honor Guard was born. Eventually, I filed a patent and brought to market my own solution to the dignity problem in hopes of allowing moms and dads like my mine a choice.

Thankfully my vision for a personal care garment was born just in time for my mom and me. When she returned home, I was called upon to assist her in the shower, my simple garment helped me to discover the relationship between dignity and clothing. Her honor found expression by covering what was private. Those intimate boundaries were intact.

I now speak and teach those in the Assisted and Home Care Industry, encouraging those who desire to improve the care of their clients. Dignity is now possible.

Searching dignity meaning took me on quite a journey, deeper and wider than I've ever imagined. Webster defines dignity as "The quality or state of being worthy of esteem or respect." My quest continues to understand this intangible state of being, and to examine tangible means of protecting and restoring dignity lost.

Robin Lenart
personalcarewear@yahoo.com

I am a family caregiver. I care for my father, who is 88 years old, has severe heart problems and has had one leg amputated. I cared for my mother for three years until her death. Now, for seven years I have been caring for my father. It has became too much for me to manage two house holds. I would do his yard work, house work, cooking and laundry, then go home and take care of my husband and two sons.

Now that I am a 52-year-old woman, and my sons are out of college and doing well, my husband suggested we sell our home to our oldest son (We let them just assume what was left of our mortgage) and take out another loan so we can add on a small in-law apartment to my father's house so we can live there and take care of him.

The process was far from an easy one. I had to literally fight city hall just to get the permit. After all was said and done, all I had to do was change the names of the rooms. I made the bedroom into an "exercise room" and a kitchenette into a canning kitchen.

After we got the addition built and we settled in, more changes take place. As most caregivers know, insurance is a nightmare. I found that my father's doctor of 20 years will no longer accept his insurance and the price of the premium was going up. Well again I fight the "system." Grateful that I am able to help my father. Angry for all the people who have no one to help them and get swallowed by the system.

I am grateful to my family of five brothers and one+- sister. They all live out of state, but take turns when I need some help. We find it cheaper to fly from state to state than to find and pay person to stay with dad. I am most thankful to my husband, my biggest support.


My greatest need? My biggest wish? I want to have the time and ability to be an advocate for seniors. I want to get loving help for the people with no family to help them. The lower-income people have the government, the rich have the money to pay for help, but the hard-working, average citizens need help. They have never used the agencies out there and don't know how to access them. One of my other desires is to have "live" people answer phones, especially at the agencies that deal with the elderly. Many elderly have hearing problems that make listening to the never-ending recordings, asking them questions and telling them to push buttons, not only frustrating, but impossible.

My other wish would be to get the TV and movie companies to reduce the background noise on the programs. Our seniors sometimes have no other activities, and rely on the TV for company, but they can't hear the dialog for the music and noise.

This is my story, these are my dreams. I pray someday I can be someone who made a difference for our seniors.
But believe me, there are days when my father is so mean to me or my husband that I want to just run away. Then I think of how sad he is and how much he misses his wife of 70 years.

Mary
Mlphillips333@qwest.net

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