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Published on: October 23, 2016
by Lonna Whiting for Inforum:
When I talk with people about being a caregiver to my mother, who is 64 and living with severe dementia, I often get the comment: “I just can’t imagine what you’re going through.”
It’s not my favorite comment, but I get it. There’s no real way to imagine what it’s like to watch a loved one spend years slowly slipping away from conscious thought, recognition and behaviors.
I don’t really find it a great use of brainpower to imagine anything about the experience of dementia caregiving. Instead of allowing your imagination to run freely, I’m going to give you these 10 tips for dementia caregivers.
1) Ignore people when they tell you “It’s harder on you.” People with dementia know exactly what’s happening to them long into their disease progression. In fact, some understand to “the end,” which isn’t usually peaceful, by the way. Severe dementia patients usually forget how to breathe and begin to aspirate and die of pneumonia or asphyxiation. Often they are aware they are actively dying, too, but just unable to communicate this.
2) Become a Social Security, Medicare and Medicaid expert. This will come in handy when federal, state and local organizations want to know how much money you spent on toothpaste for your loved one in June three years ago. In fact, if you’ve ever been personally audited, this is a great training experience for what to expect when you need to account for the (at minimum) $6,000 a month to cover your loved one’s housing, medical and other expenses.
3) Paperwork, paperwork, paperwork. If you think you don’t already have enough bills, junk mail, email, forms, letters, flyers and notices, just wait! That stack on your kitchen counter is about to grow at least 4 inches a month. Be sure to open every piece of that mail or you might find yourself in trouble regarding the rules, regulations and the penny-pinching expenditure tracking mentioned in Tip No. 2.
4) Lawyer up. This one is particularly important for when you have to sign a power of attorney. This gives you freedom to make important decisions your loved one can no longer make, like choosing “do not resuscitate” or whether or not to donate your loved one’s body to science.
5) Expect support … in the beginning. This is a tough one to accept because we expect friends, family and colleagues to rally around us in our times of crises. However, because the disease progression is typically years, not months like many other terminal diseases, people get fatigued with helping out. In addition to this fatigue is the fact that it gets increasingly difficult emotionally to witness a friend or loved one decline due to dementia or Alzheimer’s.
6) Don’t expect the royal treatment. Nursing homes are not going to roll out the red carpet when you drop off your loved one at her new home. Subpar food, questionable hygiene care and social inattention should be expected.
7) Don’t blame the staff. A career as a nursing home aide, CNA or assistant is not glamorous, and the pay is woefully inadequate. Your loved one’s aides will do the best they can to accommodate specific needs. Believe me, my mom’s aides are unwaveringly devoted to their residents. Unfortunately, turnover is high, burnout even higher, and nursing homes’ bottom lines are generally about profit, not protecting dignity.
8) Detach yourself. There will be times when you want to run away, wish your loved one would just die already, or you’ll attempt to shirk responsibilities on a long-lost relative who seems to have her stuff together. In lieu of erasing your identity, covertly moving to a remote country in Central Europe and living off seed potatoes and weak tea, just take a day off.
9) Become noseblind. Not considered a standard measurement of quality of life for dementia patients is oral hygiene. Your loved one will eventually not understand how to brush her own teeth, in which case the morning ritual will be moved on to staff. Most, if not all, dementia residents will have halitosis. It’s part of the disease, so take a tip from the nurse playbook and rub some essential oils under your nose. Lemon-eucalyptus is lovely.
10) Know you are not alone. Though you will feel lost. Inconsolable. Frustrated. Sad. Angry. Though you will want to give up, you will not. The love you have for this person is going to be stronger than ever. Your instinct to protect this person will be more solid than you ever imagined. Your desire to create happiness during the longest goodbye will be a potent force. But feelings of being alone will come up. During these times, reach out to people like me, those who understand.
And console yourself with this affirmation:
I am not alone.
I am not alone.
I am not alone.
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