I am not professional advice giver. In fact, as a general rule, I advise people to do the opposite of what I suggest. Which then, I suppose, actually means they should follow my advice in the first place. Which is a terrible idea. Just call me Vizzini.
Anywhoo, here my tips for caretakers when it comes to making sure they don't end up requiring help of their own. My list is based off of anecdotal evidence gathered from the past 25 years and is in no way comprehensive. Please comment with coping tips that have helped/continue to help you or those you love (or kind of like).
1. First and foremost, ask for help. I wrote about this in detail here. Ain't no shame in needing to talk to a professional, enlisting some happy meds (per an MD's order, of course), seeking out others in similar positions, inquiring about friends' friends expertise, etc. It's amazing what an empathetic ear can do. Or a high-five. I got the latter from a cop last week and it TOTALLY made my day 10,000% brighter.
Many associations (e.g., Multiple Sclerosis society, National Alliance on Mental Illness) even offer resources for caretakers from support groups to outreach workers who can assist you in applying for aid, insurance, etc. Reach out and they often respond immediately with something workable.
2. Accept help from those who offer. Since I had a kid, I realized the importance of this tip. People won't offer to help you in situations like a new baby o r a sick loved oen unless they really mean it. Take them up on it.
Last week, I asked a friend to pick EK up from daycare while I admitted my mom to the hospital. And he stayed the night. It was glorious to not fret one second about his needs and enabled me to manage everything on our end. Others have taken him for a few hours so I can run errands or go to the doc...or even a date (eegads!). I don't want to expose him to chaos or my short temper, and who doesn't love sleepovers? When things slow down, you can always reciprocate.
Honestly, what gets me are the folks who don't have a support network whilst they are responsible for managing another person's affairs. You need laughs, and hugs and slaps on the ass. It's a proven fact.
obsessive resourceful. The Internet is your friend (assuming you have access). So is your phone. And maybe a glass of wine once in a while.
After procuring a list of potential housing options from a NAMI representative, I spent a few hours yesterday calling around to investigate new digs for Ho-Ho. ALL of my conversations went like this:
Me: Hi. My mom has MS and is mentally ill.
Them: We don't service disabled folks.
Me: So they are mutually exclusive conditions?
Them: We need to use our elevators to move our linens.
Me: I see. Sounds like a priority. Laters.
I mean, seriously? Not one place can manage a dual diagnosis other than a nursing home or a $200/day swanky North Shore place? Dayum. After a freaky freak-out, I turned to the Interwebs and found a 2012 WBEZ story about housing the mentally ill. A few tweets and emails later and I was on the horn with a social worker turned journalist. Not only did he have incredibly useful suggestions for us, but he called the situation "bullshit"; candor I desperately needed at that exact moment (see suggestion 1.)
Since 2005 I have found that persistence is the #1 way to keep on keeping on.
4. Along the same vein as #3, manage expectations. Nothing ever goes according to plan. That's another thing they told us in that 12 million hour birthing class. And, I don't mean this in a negative, woe-is-me way. Just like a "hey, we checked Ho-Ho into the hospital but they are refusing to give her pain meds" kind of way. Or, hey, "Ho-Ho is supposedly taking her medications but showed up in a different city, with a fellow plane passenger's suitcase, wearing said passenger's too-small clothing along with three pre-paid hotel reservations." We have lots of these types of stories. You can't prepare, so you just push on through with the help of trained professionals, your support network and maybe high-five from a cop if you are lucky. Seriously, it was awesome.
5. Try to protect your time. I am fiercely protective of my "family time", but I have to admit it's incredibly difficult; you always feel like you are choosing one person/people over someone else. I work to schedule appointments so that neither Mr. Swirley nor EK have to join us. We visit Ho-Ho to run around her place and let old women squeeze both sets of EK's cheeks, but let's be honest, spending time at Walmart picking out underroos for Ho-Ho is not too high on Mr. Swirley's list.
And while she calls 10,000 times a day, I have to remind myself that most often things aren't as imminently disastrous as she reports. I respect her perspective, but can't and won't run out to her every time she calls because her teeth are lost or she needs more conditioner. GOOD GOD WOMAN! She goes through like a gallon/week. I think some professionals call these "boundaries"? I call it "silencing my cell phone".
6. Remind yourself that this isn't forever (at least for most). I am coming to terms with the fact that Ho-Ho's decline will likely be a long and painful one. We will be presented with difficult choices and I am sure will feel that we are failing her from time to time. Managing that guilt is terribly hard, but I suppose is part and parcel with caring for someone you love
(but might not always like).
I do know that at some point, one of those choices will be a long-term care facility. Once that decision is made, it will become easier for us on a number of levels. It's an ugly thing to say, but a sentiment I have heard time and time again from many folks in similar positions. Nothing is ideal here, but the fact that there is an end helps us see through some of the heaviest times.
7. Doctors aren't magicians. I
always sometimes feel that the doctors aren't listening to us . And then I remember that they have 12,000 patients, most of whom don't irrationally refuse medications. Again, we have to manage expectations. This doesn't mean that I am cool with completely disregarding communicating with family, not returning phone calls, crappy bedside manner or general ambivalence. But I get it.
And with a progressive disease like MS sans disease modifying drugs PLUS psychiatric issues (gesundheit!), I understand medical professionals are limited in what they can do. That said, I will still stalk the hell out of them (see point 3).
8. Keep your sense of humor. This situation sucks, but at some point in your life 99.9% of EVERYONE YOU KNOW is going to be in some sort of caretaking position. Seek out help from the ones who have been there and help the ones who have yet to join the party. The unpredictability is what makes this hilarious. Share that part, because the rest is pretty boring.
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