I’m worried I might have dementia and want to prepare my kids for it.
Hi, I’ve been having short-term memory problems for some time. I forget where I put stuff, what I was doing, and even certain words. My handwriting has gotten worse, I’ve forgotten to pay bills, and my organizing skills, which used to be good, have gone to hell in a handbasket.
I’m only 68, and while I still can, I want to make it easy on my kids when they have to move me to a memory care facility. What should I be thinking about? I’d like to think I’m worrying for no reason, but that’s not what my gut tells me.
What should concern you and when
Forgetting things MAY be a sign of dementia but it may not. If your forgetfulness is something you can address with reminder notes, it’s one thing. If you’re forgetting you’ve left food in the microwave for a week, it’s another.
The real question is whether the behaviors you’re concerned about are endangering your life, health, or safety.
The kind of things that should concern you include inability to remember where you are, how you wrecked your car, or who your kids or other familiar people are; getting lost in your own house; repeatedly overdosing or forgetting to take meds; inability to recognize ordinary tools like kitchen knives or screwdrivers; not understanding how or when to pay bills or paying the same bill multiple times; leaving things in strange places; or not remembering how to use a phone.
There are other signs, but chances are that if you DO have dementia, you won’t be the one to notice them
What you should do now
You’re wise to prepare for the time when you won’t still have your independence. No one lives forever, so don’t delay laying out how you want your care to be handled once you start to lose the ability to live independently. Making those decisions now can smooth the transition when it comes and make it easier on your future caregivers.
It’s a good idea no matter what to talk to your Attorney to let him or her know how you want to be taken care of while you’re still able to make that decision. So start there. Topics you may want to discuss with your attorney include a (living) will, guardianship, and power of attorney.
Be clear in your own mind who you trust to carry out both the financial and medical responsibilities of taking care of you. You’ll also want to make it clear, to anyone the job falls to, whether you want the best care you can get until the money runs out, or whether you are willing to consider a lower level of care in exchange for greater certainty that SOMEONE will take care of you to some degree. If you’re not sure what your assets are, talk to a financial planner. For instance, sometimes people forget that a deceased military spouse may have left survivor benefits that you can use for your own care. Some people may have forgotten they have long term care insurance or other assets.
Talk with kids about your concerns. Tell them how important it is to you that they know you trust them, and remind them that they are all loved, you won’t second guess their decisions, and that you understand that you may be putting them in a difficult situation. Differences of opinion among siblings about how to care for an aging parent can sometimes tear families apart, and sometimes the only thing that can keep things glued together is YOU. 🙂
Make sure you know who’s willing to help and in what way. For instance, a child who is an accountant may be a good choice to manage your finances, while a child who is a nurse might be a better choice to help manage your health. Also, make sure that ALL such children understand your priorities–so, for instance, you don’t have one child trying to stretch out your money so it will last at the same time another child is looking for top-tier 24×7 medical care that will burn through those assets quickly.
And give yourself a pat on the back for taking action.
What to focus on in the meantime
Talk to senior living and assisted living centers near you about long-term-care options to ease you into less independent living. Many of them require new residents to be able to attend to a certain level of self-care in order to admit them into their assisted living program, but allow THOSE residents to age in place, including memory and dementia care. Don’t wait until you don’t know who you are and can’t get up out of a wheelchair!
Since you’re fairly early in any cognitive decline you may have, talk with your doctor about Namenda and other medications that may preserve your existing memory. Meanwhile, adopt compensating habits if you haven’t already, such as leaving yourself reminders about things you don’t want to forget. Don’t count on your ability to remember whether you’ve done the thing in question–take the reminder down when you’ve done it!
Don’t be shy about asking for help figuring out how to pay bills (especially if your spouse is recently deceased and used to do all that!), cleaning house, and dealing with the things you now find burdensome on your memory.
Mental status vs state of mind
Let’s change gears for a moment, though. So far, we’ve been talking about your cognitive and mental status. Now let’s talk about your state of mind. Broadly, how happy and engaged are you in your own life? Are you just concerned about making timely decisions about your own care, or are there deeper-seated fears that need to be addressed? It’s normal to be more than a little flummoxed, for instance, if you’ve recently survived the death of a spouse with whom you shared bill-paying and housekeeping. If you find that you’re having difficulty paying bills and you weren’t the one who paid them before, that MAY be normal. If you’re concerned that you’ll NEVER be able to take over what used to take two people to do, it’s okay. It takes a LONG time to adjust, if ever.
Are you scared, lonely, lost, at loose ends? It may be good to talk to a therapist, priest, or someone else trained to walk together through rough times and help you figure things out–whether or not you have dementia.
In the meantime, be kind to yourself and give yourself credit for doing difficult things with grace.
