Caregiver’s Bill of Rights

I have the right …

  1. To take care of myself! This is not an act of selfishness. It will give me the capability to take better care of my relative.
  2. To seek help from others in providing care, even though my relative may object. I recognize the limits of my own endurance and strength.
  3. To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know I do everything I reasonably can for this person, and I have the right to do some things for myself.
  4. To occasionally get angry, be depressed, and express other difficult feelings.
  5. To reject any attempt by my relative (either consciously or unconsciously) to manipulate me through guilt, anger, or depression.
  6. To ask for consideration, affection, and forgiveness from my loved one for what I do, for as long as I offer these qualities in return.
  7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
  8. To protect my individuality and my right to make a life for myself, that will sustain me in the time when my relative no longer needs my full-time help.

The Caregiver

By Margie Eisenhower

There is a wonderful saying that goes like this (anonymous):
“Today I bent the truth to be kind, and I have no regrets for I am more sure of what is kind, than I am of what is true.”

As caregivers of a patient with Alzheimer’s or other dementia, there will be times when the patient imagines things that aren’t real. Because of their confused and jangled minds, they become frightened or stressed by these things. You can try to relieve them of the worry from these things if they can’t let it go. For instance, one woman in a care home “imagined” there were two children coming in and out of her room. She was afraid and they’d be hurt. She called her husband, very agitated; she didn’t know what to do. He told her “not to worry, the police department knew about them and was sending their parents.” She was so relieved.

My own mother told me the neighbor boys were coming into her home and stealing money. She lived a great distance from me but I knew the neighbors well, and knew this couldn’t be so. Contradicting her and trying to reason with her about the impossibility of this would have been futile. Instead I said “Yes, I know about that, Mom, it’s terrible! However, I’ve talked with the parents and they will make sure it doesn’t happen again.” That truly appeased her. When it came up again another time. I said the same thing, and again she was relieved. Eventually, I moved my mom closer to me and when I packed up her home, I founds several rolls of twenty dollar bills – one roll inside a cereal box, one inside a roll of paper towels, one hidden in a secret drawer in an old trunk, and rolls in a couple of other places. It was a “catch-22.” She’d worry about the neighbor boys stealing it, so she’d “hide it” from them. When she needed money she couldn’t remember hiding it; hence, the neighbor boys took it!

One daughter told me her mother was very frightened, as she thought a burglar had entered her home and she feared he’d be returning. The daughter told her mom she had called the police and they’d already caught and arrested the burglar, so she needn’t worry any more. That’s all it took.

As a peer counselor for the Alzheimer’s Aid Society, I’ve had both men and woman tell me that they can’t imagine lying to their own mother; But, that’s where the quote above comes in. This “white lie” you’re telling is a way to bring comfort to that mom whom you love, respect, and want to protect.

I had someone tell me once, that having Alzheimer’s or dementia is like having someone fly you to a foreign country, set you down on a bench in the city and just leave you! You can’t speak the language, you don’t know where you are, you don’t know where to go, and you don’t know anyone around you. Can you imagine the fear and anxiety this would bring? Many patients deal with confusion and stress on a regular basis. They forget they have Alzheimer’s but they know something is very wrong with them and it is always frightening.

A simple rule when dealing with loved ones: Be kind. Don’t argue with them. Don’t tell them they are wrong. Don’t tell them they don’t make sense. Don’t say “You already asked me that!” Don’t say “You’ve told me that five times!” They can’t help it that their brain is off balance and mixed up. Ask yourself, “how would I want to be treated if that were me?”

This job isn’t easy! Caregiving is probably the toughest occupation out there right now. Call your local office for help. Take yourself to a support group. Not only can you visit with people who are going through the same thing you are, but you will pick up ideas and suggestions that will make your job much easier. No one knows how difficult this job is unless they’ve done it themselves. And sometimes other family members make it tougher instead of easier because they simply “don’t get it.” What they don’t know is that unless they spend two full days with the patient, they have no idea how bad the disease is or how hard it is for you the caregiver.

I salute you! I admire you! I wish you well.

Beatitude for Care

by Pat Warner RN, MSN

BLESSED are the caregivers who understand Alzheimer’s Disease as a reversing of the aging process. For they shall have a better understanding of my being “caught in a time tunnel” quickly reversing its pace.

BLESSED is the person who comes up to me and tell me his/her name first and reminds me of some shared experience we’ve had This may help my recall process. For when I become less stressed and not with such memory searching for the unknown.

BLESSED is the person who can bring me back to happier times when I was worthwhile and had a good sense of self-worth. For many of my once friends have now abandoned my world.

BLESSED are the caregivers who let me periodically withdraw and re-group. For loud noises of children, barking dogs, TV and radio set me into instant confusion and temporarily devastate my mind.

BLESSED is the person who can provide me with some form of comfort when I become too confused or restless and can no longer concentrate on my independent functioning. For they can offer me food, smiles, hugs, or just a friendly hand in silence.

BLESSED is the person who recognizes my “good days” and my “bad days”. For they can help ease undue tension by distraction or avoidance of situations to keep my world with limited confusion or stress.

BLESSED is the caregiver who understands my secrets of communication when my speech is rambled, jumbled and scrambled. For they can lend me a smile, wink, or short embrace which helps me through my daily routine.

BLESSED is the caregiver who doesn’t raise his/her voice when I use poor social skills and manners. For they understand I have diminished control to recall the steps it takes to get ready for bed or to remember manners at the table.

BLESSED is the family for letting me frequently repeat my thoughts and deeds without expressing annoyance or frustration. For I only recall the resent question or thought or action I ask/say or do, due to short-circuiting of thoughts and actions in my dying brain.

BLESSED is the person who understands about my failing brain and helps me through the most basic learned tasks. For they assist me with bathing, dressing, eating, and walking. For they often have to hand me the right eating utensil or clothing item to wear, or even use repeated hand gestures to get me to “sit”.

BLESSED is my spouse who tolerated my blaming him/her when I can’t find the $50 I hid in my bible. I truly do not recall taking the money and conveniently placing it under a stack of magazines on the tool shelf! For I tend to become occupied with my losses.

BLESSED is my spouse who patiently guides me out of the closet and into the bathroom in the middle of the afternoon or evening. For he understands what becoming lost does to me. I can no longer associate where I am or who I am.

BLESSED are my family members who have so carefully and patiently pre-arranged for legal guidance and directions. For the many questions and concerns that involve withdrawing money from savings, or investing money can be now so quietly and calmly answered and signed without upsetting us both. And I no longer explode in anger from overload. Remember, I can no longer separately “real” from what is “fiction.”

BLESSED is my caregiver who no longer corrects me when I’m home and ask “to go home.” For to me, “home” no longer exists. “Home” was a time when life felt more comfortable. So for now I need that hug and reassurance that you’ll take care of me.

BLESSED are the people who so kindly give of themselves and the special support groups that are set up for families of victims with memory impairment. For they provide an opportunity for further learning, caring, sharing, and loving of Alzheimer’s victims. And….

BLESSED am I who have struggled through the illness with confusion and shame. For who I once was, I no longer am. And who you are I no longer know. But, it’s your gentle touch and voice that remind me of what I so miss. For only you can reach out and stand by me.