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As posted on DrLaura, ShareCare, and Intent
The journey begins with immense mental challenges, emotional demands, and requires us to learn all we can about this mysterious disease. By the end stages, physical strength is required which most of us find impossible to meet on our own. We need help, but we need more than an extra set of hands going through the motions of basic care.
Almost twenty years after my mother first started showing signs of memory loss, I reflect on the blessings we have received from exceptional caregivers who have walked alongside me, had my back, and at times gently pulled me through difficult situations. Words cannot adequately express the immense gratitude I feel for these precious individuals who have carried us through these difficult years.
I've also, at times, been exasperated and felt helpless because of situations my parents have been placed in by individuals providing their care. Sometimes I think family members are viewed as unreasonable in their expectations, which are often misunderstood. What do we really want from those who provide care for our loved ones?
It's imperative those providing care know if we are to form a team - and our loved ones are counting on us to make sure this happens. From my perspective, what we, as family members, are looking for is really quite simple. In an effort to put these expectations into words, I share these insights with caregivers everywhere.
Relate to the person, not the disease.
Our loved ones are much more than the disease you see. They did not choose this condition and they are not trying to be difficult. Everything they do is a form of communication. Please make an effort to get to know our loved ones. Call them by name and speak to them as you would have if you met them twenty years ago. They are human beings deserving of respect.
Please slow down!
No-one is discounting your workload. However, our loved ones will not respond well to being rushed. Their life, as well as yours, will actually be easier when taken at a slower pace. Too often the focus is getting from Point A to Point B, which results in needs being totally overlooked. Please be attentive to these folks whose requests are too often ignored because no-one is listening.
Provide the tools they need to survive.
Our loved ones would love nothing more than to be independent. Unfortunately, they now must rely on you - in the end stages their very existence is totally dependent on your diligence in meeting their basic needs. Do they have a fork to get food to their mouth? Are their hearing aides, dentures and other necessary medical aides provided? Are they cold? Thirsty? Do they need their nose wiped? Are they dirty? They may not be able to tell you, which means you must open your eyes and look at them with a compassionate heart.
Insure they are clean.
Not only is good hygiene a matter of health, good smelling, well groomed individuals receive more positive attention - it's human nature. Cleanliness is more than a quick shower. Care and attention to details, such as dirty nails, sticky hands, unkept hair, unbrushed teeth, and skin in need of lotion is so important to our loved one's welfare. Being appropriately groomed, at any age, in any condition, provides a sense of dignity and self-worth.
Treat them with the same compassion you would a child.
When in doubt, ask yourself if a child should be treated this way. They are not children, but they deserve the care and concern a small child would receive. This means do not lock them in a room alone without supervision, do not make them sit indefinitely in a chair with no interaction, and please make sure they are appropriately dressed and not exposed in public.
Be respectful of their environment.
Their room and the items within that space are all they have left. Please be respectful: make their bed, put items away, hang their clothes with care, don't leave plastic gloves laying around or use the floor as a wastebasket. Our loved ones' generation worked hard for everything they have; please help them take care of their furnishings and belongings.
Please be honest.
We know you are not perfect - we aren't either. There is no denying your job is tough and mistakes will be made. What we are asking is that when they are, be honest. Please don't make excuses or place blame on others. Most of all we want to know we can trust what you say. Let your actions prove that you will do your best and make changes when needed.
Your patient, as well as their family, is living through one of the worst tragedies of our lives. We are grieving this individual and the life they have lost. The losses are devastating and we, as well as our loved ones, are vulnerable. We are hurting and will require grace and understanding along the way.
This may be a job for you,
but these are the golden, final years, or days, for them.
Imagine your retirement years and how you would want life to be. Please don't burden your patient with unnecessary and unpleasant conversations. Above all, we all must strive to make everyday a good day. This moment is all our loved ones are guaranteed. Thank you for being a part of it and caring for them with your heart.
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