06 September 2017
I got a phone call Monday evening that would change everything: the devastating news that my father had been diagnosed with dementia. I spent the entire night (before a long day before two large customers, no less!) of the news of the diagnosis talking to my father and talking to my elder brother Troy about next steps. I felt - I still feel - lost. I don't know much about dementia so I asked on Twitter for any insight people could share on the matter. What I got was a deluge of people responding with kindness, compassion and wisdom in both private and public channels. My tweets are synchronized with Facebook and so there, again, I was overwhelmed with oceans of kindness. Thank you, very much, everyone.
I got lots of great tips from folks and from soaking up a book recommendation (called the 36 Hour Day):
Figure out designated power of attorney (DPOA) as soon as possible. A person will soon lose the ability to be trusted with their own destiny, legally. It's important that when there's a crisis, somebody entrusted is able to act.
Take time to be with that person. Take in their stories. Use the time to absorb their histories. It'll put both patient and family/friends more to remember and cherish.
Remember that a patient with dementia, which describes a category of diseases that impair the function of the brain, are not in control of themselves. They may say things or do things that hurt you. They may present a danger to themselves. They may react with fear to mundane things. It's important to keep their environments distraction- and surprise-free and their routines predictable. Don't contribute to their confusion. Symptoms reveal neuro-cognitive impairment. It's impossible to perfectly diagnose dementia without a post-mortem so - if in doubt - treat it.
Catastrophic reactions to mundane circumstances are common. A patient might become irate when asked to finish dinner. They might become difficult if they feel that they're not in control, or if they are scared.
Communication can be hard. Speech and comprehension are functions of the brain often impaired by dementia. Music can help animate otherwise idle minds. Communication is an essential part of ones sense of personal self. Aphasia means that people can't use words, or that they can't communicate.
It's important to stay ever vigilant for other conditions that may complicate dementia. Treat them quickly.
You should simplify a patient's daily routine and environment. They have a harder time processing stimuli. Remove household clutter. Don't leave surprises. Remove physical obstacles like throwaway rugs on which a patient might trip. Remove expired foods from the refrigerator.
A dementia patient loses their short term memory. It can be frustrating to answer the same question multiple times. Focus on, and savor, the moment. Accept who the patient is in the present moment. Also, use the older, long-term memories as a resource that you can dip into to inspire joy and happiness for both caretaker and patient.
Find enjoyable activity for a patient. Such activity can slow the onset of dementia. Even mundane things like folding laundry can be enjoyable. Folding laundry can be enjoyable. A 2011 study in the "Inter Generational Psychiatric Journal" found that continued 4exposure to pets, like a dog, can mitigate depression and increase alertness.
Figure out the patient's schedule. Many feel depressed and erratic as sunlight disappears. Many people feel depressed as the day progresses and sunlight disappears. This is called sundowning. Take advantage of this fact - help the patient sleep earlier in the day. Perhaps the medicine they take once daily makes them drowsy. Have them take this in the early evenings, instead of - for example - the mornings. Light therapy is known to help here, as well. Tart cherry juice contains sleep-inducing melatonin that helps a patient to get more sleep.
Patients are people. Non-verbal communication is critical. Caregivers should assure patients that they're still people, and are cared for. Touch is valuable here. It fosters sympathy and gratitude. They lose capacity for recognition of a giving touch.
Caregivers must have a solid strategy for self-care. It's hard to have to constantly look after someone else, in addition to whatever other duties life throws at you. It's an unforgiving chore and you must be prepared for it. If you risk burning out you jeopardize your own health as well as that of the patient. It's important to know that you can lean on family and friends to help ease y our burden and perhaps even shoulder some of the burden here.
You're not alone. Take the time to learn about resources that can help you. There are numerous websites, organizations and government aid programs that can serve you here. In the United States it's well worth learning about how Medicare and Medicaid can help people with dementia.
My family and I are coming to grips with this. Dad already suffers from macular degeneration - he's effectively blind. And he has neuropathy in his legs - he can't walk. He's 80. It's not easy for him to take up a new hobby or even move around without escort.
I bought him an Amazon Echo. I figure we'll set that up and he can play Audible books entirely with voice command. He can use it to get the latest news. I'm always keen on getting any ideas to make dad's life easier, of course, so don't hesitate to reach out if you have experience in this situation.