I have a Twitter pal, Stephen L. Goldstein (@DrSLGoldstein), who I got to know (on line) through my friend and radio host, Nicole Sandler. Stephen wrote a book, When My Mother No Longer Knew My Name: A Son's "Course" in "Rational" Caregiving:
"When My Mother No Longer Knew My Name: A Son's 'Course' in 'Rational' Caregiving should be the first book families read to prepare themselves for caring for aging relatives. It's a one-man support group, written like a friend who's "been-there-done-that," talking anecdotally, but authoritatively, to a friend who needs help. It is raw and gritty, as well as funny and inspiring--offering hope that one can overcome a mountain of seemingly insurmountable challenges, for which they likely feel devastatingly unprepared.Each brief, compelling, highly readable chapter tells how a son learned "on-the-job" to deal with different situations all caregivers face as his caregiving role evolved from nominal to 24/7. The book is packed with down-to-earth practical advice and tips to make caregiving manageable-even joyful. There's even a unique self-assessment guide so caregivers and potential caregivers can benchmark and enhance their ability to manage the often lonely, challenging, unpredictable, and overwhelming roles they may assume.
When he read my tweets about my mom having died after a 10+ year struggle with Alzheimer's, and now my mother-in-law suffering from the same horrible disease, he messaged me with a very flattering, and very challenging, DM: " You're a gifted communicator. Consider sharing your wisdom. Almost EVERYONE needs help sometime."
My immediate response was no way. No way am I up for another gut-wrenching post after the one I wrote about my dad's passing. No way can I muster up advice for others when I can barely deal with my own emotional state. No way do I feel qualified.
Then, about five minutes ago, I had a phone conversation with Mr. Laffy about his mom. Please move on to our next political post if this is not something you care to read, but I now feel compelled to share a few things with anyone who is in the same position we are... again.
Let me start by emphasizing that I am no expert on any of this. My dad was a superb doctor and caregiver for my mom, so I do have a sadly unwelcome and unexpected backlog of observations and experience to draw from. My grandmother also had dementia (likely Alzheimer's but we're not sure), and I cared for a close friend and writing partner who had a near-deadly brain aneurysm, as well as another very, very dear friend who nearly died in a car accident resulting in a severe, debilitating concussion (I did what I could from across the country).
Unfortunately, I'm accustomed to tending to people close to me who have had brain trauma of one kind or another.
So if you will once again indulge me, I offer the following basics for you to ignore or heed, whichever you feel inclined to do:
- Do not wait to get help. Dementia progresses at different rates, but it sneaks up on you and progresses so quickly or erratically that once the disease (or stroke) reaches its more devastating stages, it suddenly becomes too difficult to handle alone. Scrambling around for assistance is scary and emotionally shattering, not to mention an enormous burden.
- The patient needs to be watched constantly, stimulated, talked to as you would anyone (no condescension or baby talk), and not left alone. Ever.
- The patient needs support, a lot of patience, attention, and care, not constant correction when they forget and make mistakes. They won't remember the corrections, and they may even feel belittled, more confused, scared, or even become resentful.
My father in law (Yes, that F.I.L.) is understandably frustrated because my mother in law is able to converse, but is at the "repeatedly asking the same questions over and over" stage. She refuses to leave the house, even for a doctor's appointment, a drive, a walk, a movie, or to get her hair done. She has (understandably) let herself go a little now, not grooming as meticulously as she once did. That's hard to watch.
They live in a lovely, smallish upscale house and have very little money to spare. We've strongly suggested that they sell the house and move to an assisted living complex, if possible. That's so difficult for F.I.L. to even contemplate, but it's a necessary step. Safety first.
Because what if... what if... F.I.L. falls down (my dad did several times) or has a heart attack or becomes even temporarily disabled by some other medical mishap or emergency? M.I.L. would probably not know how to call us or anyone else any more, or remember to even if she could. She would be virtually helpless and alone. And that is not only heartbreaking, it is dangerous.
It becomes so important to think ahead, to plan, to not be afraid to C.Y.A., to assume the worst could happen, because it sometimes does. I can't begin to tell you what a relief it was to have the Neptune Society do their thing so sensitively and efficiently when my dad died. My parents planned for that way back in... the 1970s.
I also can't being to tell you what a relief it was that @AliKat747 convinced me-- educated me-- that hospice care begins well before the "very end." Two hospice nurses regularly visited my dad at home for medical checks, weekly at first, then more often as he needed them. They provided support, medical care, supplies, prescriptions, a hospital bed, you name it. And Medicare covered all of it.
Not privatized Medicare... "Big Government" Medicare. Are you listening, conservatives?
Foresight, forethought, planning, thinking rationally-- when you'd rather curl up and hide or shake and scream or cry or deny-- all of these are mandatory so that you can breathe a little when the worst does finally happen, or even begins to unfold. Before the real nightmare begins, take steps to preemptively disarm it.
Keith Olbermann convinced me to get my dad's end-of-life documents in order well in advance. So we did; we organized all my dad's finances two-plus years ago and assumed control of it in time for him to approve while he could still make rational decisions and understand clearly what was happening.
Major point: Asking for help is okay. Needing help is okay. Getting help is okay. It's more than okay, it's a gift. So please, if anything like this happens to your family or friends, if our situation reminds you in the least of your own, resist procrastinating. Don't allow yourself to flounder when you can take a tiny bit of control, the only control you'll really have, over a devastating situation.
Trust me when I say, you will feel more comfortable, reassured, secure, soothed, and able to deal. It's tough enough when you're overwhelmed by all the stress and pain and trauma and feelings of helplessness and confusion that come with tragedy. By making as many arrangements in advance as possible, it not only allows you a little space to cope, it allows you more peace of mind.
I hope some of this helps, and I hope F.I.L. can take advantage of our experience and apply them to his own.
And thank you Stephen Goldstein for sending a copy of your book for F.I.L.
I didn't even need to ask, you helped us all on your own.