Utah Family Caregiver Support Program

Improving quality of life and preserving independence in your home.

Caregiver Bill of Rights

A Caregiver’s Bill of Rights

I have the right:

  •  To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.
  •  To seek help from others even though my relative may object. I recognize the limits of my own endurance and strength.
  •  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 that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  •  To get angry, be depressed, and express other difficult feelings occasionally.
  •  To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger, or depression.
  •  To receive consideration, affection, forgiveness, and acceptance for what I do for my loved one for as long as I offer these qualities in return.
  •  To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.
  •  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 help.
  •  To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
  •  To:_____________________________________________________________________

Add your own statements of rights to this list. Read this list to yourself every day.

Reprinted from Caregiving: Helping an Aging Loved One, an AARP publication by Jo Horne.

56 things to do with the person who has Dementia

1. Hang up colorful travel posters of the “old country”, National Parks, or other scenes of interest.
2. Pick up old magazines at rummage sales — LIFE…LOOK…POST… — or other inexpensive “mementoes” of the past.
3. Provide a list of proverbs, slogans, phrases, limericks to finish.
4. Offer Mother Goose Rhymes printed on large cards to read.
5. Provide word games… opposites, riddles, hangman (have a list).
6. Create a safe “junk” drawer or box specific to interest.
7. Create a “memory box” that can travel.
8. Place unwound yarn in a coffee can with a hole in the plastic cover, yarn can be pulled and wound into a ball.
9. Cut up pieces of rug yarn… sort by color.
10. Make pie crust from scratch or sticks… have person roll them out. Eat a pie that was baking during the above activity.
11. Match socks (a dozen pair of bright colors).
12. Take knots out of pre-knotted dish towels or tube socks.
13. Sort colored plastic eggs into empty egg cartons.
14. Fold old linen napkins, pretty towels, scarves.
15. Provide basket or case full of tiny baby clothes scented with baby powder to fold, caress, snap, button, tie, enjoy & remember!!!
16. Polish and sort silverware into a plastic tray. Sort large buttons, spools, nuts and bolts, plastic bottle tops, etc. Avoid items small enough to be swallowed.
17. Cut buttons off old sweaters, shirts, etc., (donated from a thrift shop). Use sandwich bags to ”package” the button sets and return to thrift shop to be sold. A good recycling project for caregiver and persons with dementia.
18. File folders from past “work-type” experiences. Example: invoices, canceled checks, sales slips, order blanks, ledger pages, old tax records. Set up an “office” for 15 minutes.
19. Create scrap books using page protectors, clear contact paper or photo albums with edges taped (3 hole binders work well as the pages can be removed and shared as a group program). Use uncluttered and happy pictures.
20. Assorted heavy duty zippers to zip & unzip.
21. Old fashioned tie-in-the-back aprons with pockets for the women and nail aprons for the men with “safe” stuff to “possess” in the pockets (i.e., keys, wallet, handkerchief, notepad & Pencil, deck of cards, measuring spoons, etc.)
22. Provide a stationary bike or pedals for exercises.
23. Old fashioned carpet sweeper for pushing.
24. A nurf ball, sponge ball or balloon to toss around.
25. A putting green in the yard (plastic cup buried in the ground). Indoors make a masking tape circle on the floor. Also use an ice cream pail for a bean bag target.
26. Provide a gentle massage, foot soaks, and manicures.
27. Ask a friend or neighbor with a baby or pet to visit, especially if children and pets have been part of the individuals‟ life experience.
28. Bird feeder… string cheerios on yarn threaded through with a blunt plastic needle.
29. Make frozen bread dough into „Bird Bread” for the feeder. Bake frozen bread dough to eat while working on the project. 30. Unravel 2” x 4” pieces of cut up sweaters for “stuffing.”
31. Develop a collection of empty food containers to be put on a shelf (cereal, salt & other spices, egg carton, butter, clean safe cans, etc.) to facilitate “shopping.”
32. Develop a simple matching game of cards with pictures and words (easy to make with recipe cards).
33. Mount simple latches, knobs, hinges, slide bolts, hooks, and locks to small boards. Generally not more than 2 to 3 items to a board.
34. Use wooden puzzles of 12-16 pieces with adult themes.
35. Adult theme simple pictures to color or water paint, mount on tag board and display.
36. Pieces of PVC pipe cut into short lengths with assorted elbows and “t” joints to manipulate and assemble.
37. Lincoln log sets or a variety of other blocks are great for stacking or building.
38. Water paint using regular water paint paper and 8 basic colors.
39. Cut up old greeting cards (stiff paper is easier to handle). Can be glued onto tag board or just “sort.”
40. Cut coupons… can put into used envelopes and file in a box or container.
41. Tear rags from old sheets, material, worn clothing (a common activity for persons from the present older generation to make rugs, bandages, garden rags).
42. Trace & cut familiar shapes… hearts, shamrocks, leaves…from colored paper.
43. Notebook and school pencil with some easy-to-read material (lists, numbers, short messages) to copy. This generation did copy or tracing work in school.
44. Old type clothes pins to sort, put together in pairs, or hang the wash (single line inside or out).
45. Nylon or cotton “stockings” (not panty-hose) to “roll” or “tuck” and put into small cases.
46. Make “finger food” snacks. Frost graham crackers with vanilla or chocolate, fill celery with soft cheese or peanut butter, stick pineapple chunks… apple slices…grapes…orange slices…etc. onto toothpicks. Cut finger jello into squares Form popcorn balls with light syrup mixture.
47. Wrap coins into coin holders (always with supervision).
48. Have family/friends make audio cassette tapes or video tapes of familiar people, places and voices.
49. Blow bubbles using either a small or big wand.
50. Use decks of cards and dominoes to invent simple games or just sort. Checkers can simply be used to match the colors on the board.
51. Stuffed animals are comforting…must be washable and safe.
52. Encourage domestic chores, such as dishes, dusting, watering plants, making beds, dust mopping, wiping surfaces, sprinkling cloth napkins and ironing with a child-type safe iron that only gets warm.
53. Polish shoes…cream polish and a rag for shining, good activity for men.
54. Old toasters, mix-master, or radio with cord cut off are great for dismantling with a screwdriver or pliers.
55. Provide a bag of assorted men‟s and women‟s gloves/mittens to sort and try on. Also, use colorful hats, costume jewelry, neckties, belts, bow ties and other safe accessories.
56. Make a photo album of family pictures copied on a copier to protect the originals. Label photos with names and relationship of resident or family member.

– Adapted from the Activity Fact Sheet which was developed by the Wisconsin Alzheimer‟s Information and Training Center.

Danger Signals for Caregivers

FEELINGS OFTEN EXPRESSED BY CAREGIVERS/CARE RECEIVERS

Anger

  •  For being trapped
  •  That others in the family do not carry their share
  •  At the impaired person’s demands and behaviors

Depression

  •  Because of an emotionally and physically draining experience

Embarrassment

  •  At the impaired person’s behavior
  •  At the thoughtlessness of others

Fear

  •  That they may be next in line; particularly with inherited conditions
  •  Of not being able to handle the situation
  •  Of what other people are saying about how the situation is being handled

Grief

  •  For the way the care receiver used to be
  •  For the way things used to be

Guilt

  •  For wanting out of the caregiver role
  •  For wishing the care receiver would die
  •  For not having done enough – and not being able to do more even when you do all you can

Helplessness

  •  The situation is too great and there is no way to control it

Shame

  •  Of the parent or spouse for their failings for what they were or are now
  •  Of self for being ashamed

Worry

  •  That they may later feel they did not give enough

Anger

  •  For being treated like a child
  •  For being confined or limited

Fear

  •  Of what is happening
  •  Of what the future may hold
  •  Of loss of control:
    • Familiar role is gone
    • Power & influence are gone
    • Mental stability failing
    • Loss of independence

CARE RECEIVER

  • Confusion & Depression

Embarrassment

  •  Because of need for personal care
  •  Because of disabilities

Guilt

  •  For spoiling the caregiver’s life

Shame

  •  For behaviors which he or she cannot control
  •  For being a burden

CAREGIVER

Danger Signals that say…

WARNING: Caregiver needs help!!

When is it OK to cry “Uncle?” To say, “I can’t give any more unless I get some help?”

Many caregivers would rather trudge on under unbearable conditions than to admit such “failure.” What happens though is their own health suffers more and more, and eventually they themselves need care. Others simply don’t realize they’re taking on too much until it’s too late.

If you notice any of the following danger signals, you are probably approaching role overload and should seek assistance from a local support group or self-help agency:

  • Your relative’s condition is worsening despite your best efforts.
  • No matter what you do, it isn’t enough.
  • You feel you’re the only person in the world enduring this.
  • You no longer have any time or place to be alone for even a brief respite.
  • Things you used to do occasionally to help out are now part of your daily routine.
  • Family relationships are breaking down because of the caregiving pressures.
  • Your caregiving duties are interfering with your work and social life to an unacceptable
  • degree.
  • You’re going on in a no-win situation just to avoid admitting failure.
  • You realize you’re all alone – and doing it all – because you’ve shut out everyone who’s
  • offered help.
  • You refuse to think of yourself because “that would be selfish” (even though you’re
  • unselfish 99 percent of the time).

Your coping methods have become destructive. You’re

  •  Overeating/under-eating
  •  Abusing drugs/alcohol
  •  Taking it out on your relative

There are no more happy times, loving and caring have given way to exhaustion and resentment, and you no longer feel good about yourself or taking pride in what you’re doing.