In my last post [The #1 Key To Providing Amazingly Awesome Care for A Person Living with Dementia], I mentioned the “top 10” questions/issues that care partners are urged to focus on–and said I’d provide my answers this week.
Like anything else I say, it’s based on having worked with over 1,100 people living with dementia and their families, as well as experiences in my own family. But still…just my opinion. The “right” answer always depends on your particular situation.
Q: What stage are they in?
A: Know the answer to this question and you’ll have realistic expectations about what your parent is capable of–and be able to plan for the future. I’ve witnessed countless a-ha moments (“So that’s why ‘x’ is happening!”) when reviewing assessment findings with families. You can use the FAST Scale to get an idea for yourself.
Q: Who’s the best doctor?
A: Definitely ask around within your circle for specific names, but also keep this in mind: the best doctor is the one who listens to what you have to say, explains what you don’t understand, and is on the same page as you with the treatment plan! The doctor works for your parent/you and should act like it.
Need help navigating through a doctor appointment? Grab Talking To Professionals: An Insider Guide. It provides a template for appointments, as well as scripts you can use and a geek-speak decoder.
Q: When’s the right time for placement?
A: This is the answer nobody likes, but it’s still the truth: It depends.
If you’ve decided you want to take care of your parent or partner in your home for the rest of her life, that’s a perfectly legit choice. You just need to have a plan in place to support that choice (see Respite Care below).
Many families tell me they want to care for their loved one at home “as long as possible.” In that case, you need to be clear on what your deal breakers are: Is it incontinence? Falls? Wandering? Transferring? Whatever it is, have a plan in place to support that choice (see next question).
For some families, the person living with dementia is living independently in his own home until that is no longer viable for the reasons listed above. In that case, safety is the #1 concern. Be clear with yourself in advance if the next move is to a memory care community or to your house, and plan accordingly (see next question).
Q: Where’s the right place for placement?
A: Here again, it depends. You may love a cruise ship atmosphere that your ranching family parent would hate. Blessedly, you don’t have to figure this out for yourself.
You’ll save yourself time and stress (and endless phone calls from community sales reps) by working with a placement professional. It’s free, and it’s one of the biggest favors you’ll ever do for yourself–trust me.
Q: Who’s best to get “affairs” in order: attorney, financial planner, insurance agent?
A: Start with an elder law attorney, and take your marching orders from her; she’ll tell you at what step to get the financial planner and insurance agent involved. Following this sequence will typically save you thousands, if not hundreds of thousands, of dollars.
Please note: an elder law attorney is NOT the same as an estate planning attorney. You want the specialist for what you’re dealing with now, and that’s an elder law attorney.
Q: What are the basics of everyday care, or ADLs (activities of daily living)?
A: ADLs refer to things that we typically take for granted, such as toileting, grooming, bathing, dressing, and eating. Over time, memory loss, anosognosia, loss of balance, fear of falls, and impaired fine motor skills make these tasks difficult (or impossible) for a person living with dementia to complete without at least some assistance.
Instrumental ADLs (IADLs) includes things such as balancing a checkbook, doing a load of laundry, grocery shopping, getting from one place to another outside the home, and making phone calls. A change in abilities in any of these areas often serves as an early indicator that something is not right. Use the Lawton Scale to figure out where your parent or partner needs help.
Q: Why is medication management a big deal?
A: Medication only works if it’s taken as prescribed. Relying on someone living with dementia to take care of this on his own is rolling the dice. He could skip doses, or he could double doses…just depends on what his brain is telling him is true at that moment. The wrong dose (or lack of dose) could prove fatal.
Q: What is advance care planning?
A: I’m convinced advance care planning is one of the least popular topics of conversation in the history of spoken language, because it’s basically an un-fun game of Would You Rather…and you’re playing on someone else’s behalf.
Would you rather die at home, or in the hospital?
Would you rather die of unavoidable disease progression (“natural causes,” in the case of dementia), or use every bell and whistle (ie, feeding tube, ventilator) the medical community has so far invented in order to delay that outcome for an indeterminate period of time?
I recommend using a POLST to help clarify the questions and answers. Please keep in mind: for most people, this is not a one-time conversation; it will evolve over time.
Q: What about respite care?
A: Many people aren’t even sure what “respite care” means, which makes it awfully hard to use it. From dictionary.com, respite is n.: a delay or cessation for a time, especially of anything distressing or trying; an interval of relief.
That sounds pretty good, yeah?
Get respite care in the form of other family members, adult day care, in-home care, or a brief stay in a memory care community. This is a win-win arrangement: you get to recharge your batteries, and your parent or partner gets a change of scenery in a safe environment.
Q: Just the term “self-care” makes me tune out.
A: That makes you like pretty much every other care partner on the planet! It also means you could be part of the infamous 40%. That is, 40% of all care partners die before the person they’re caring for because they don’t take care of themselves.
Are you tuned in now?
What would happen if you were part of that 40%? Would would happen to your person?
Don’t fall into the trap of magical thinking that “the worst has already happened.” I’ve got over 15 years worth of stories to prove you wrong. Take care of yourself. Start with 5 minutes a day and build up your tolerance from there. YOU’RE WORTH IT!
Please add your voice to the conversation. I invite you to share your experience, thoughts, questions in the comments below.
Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.