Frugality and Alzheimer’s | a guest post from A. Marie

Reader Shelagh is traveling the tough road of having a spouse who is living with Alzheimer’s, and she emailed me to ask if I could connect her with A. Marie for some help.

A. Marie sent me what she wrote to Shelagh, and offered to let me share it here so that it could help any of you who might be facing this challenge as well. 
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Shelagh,

Kristen contacted me with your request for advice about your husband with Alzheimer’s. If you want to know more about me, here are my “Meet a Reader” interview and the follow-up post Kristen did after my husband died:

• Meet a Reader
• Update after DH’s passing

I’m so sorry that you, too, are in this situation. Welcome to the club none of us wants to join, where there are too many questions and not enough answers.

The first and probably the best advice I can give you is to do some reading on the Alzheimer’s Association’s forum for spouses and partners of folks with AZ. The commenters here have absolutely seen it all, and this forum was probably the single biggest thing that kept me sane during my DH’s AZ.

Now, here’s my attempt at an answer to the question you asked Kristen: “My husband also lives with Alzheimer’s and I am curious about how to balance frugal tactics and what is best for him, eg. not worrying about him washing just a few items of clothing during prime time multiple days a week, because it’s great that he can still use the washer (just one example).”

I’m afraid that this is something you’re going to have to work out on a case-by-case basis–with the question of his remaining independence vs. safety considerations first, property damage second, and frugal tactics probably running a distant third.

Safety

First, if he’s trying to do something that will compromise his or your safety, that must be dealt with.

Examples might include trying to cook something on the stove and leaving the stove on–or (unfortunately) driving, if your DH is still driving.

AZ affects reaction time, coordination, and judgment as well as memory–and if your DH does have a formal diagnosis of AZ or some other dementia and gets into an accident, he and you could be sued for everything you’ve got. The spouse/partner forum on the link above has numerous comments about this, plus ways to redirect/distract about driving.

Property Damage

Second, if he’s doing something that causes more than minor property damage, that’s going to need a work-around too.

With my DH, this involved most of our big lawn care/snowblowing equipment, which he wrecked by putting oil into the gas compartment or doing other misguided “maintenance.”

I was finally able to redirect him from this (thank goodness, he never put up a major fuss about it) through simply suggesting we save him a bunch of trouble by hiring a reliable lawn/snow guy.

Frugal Tactics

Third, there are the many, many things like your example about the laundry.

In these cases, I tried to go by two principles: “Pick your battles” (wisdom from a friend who was parenting teenagers), and “Redirect/distract rather than argue.” In other words, decide what’s important enough to you to intervene about, and then try to redirect him to some other activity if it’s important. As I’m sure you’ve already discovered, there’s no point in trying to reason/argue with a person with AZ; his “reasoner is broken,” as the commenters on the forum often say.

And I can’t sign off without this recommendation, which may cost $$ in the short term but will be frugal beyond belief in the long term: If you haven’t already done so, please consult a certified elder law attorney (CELA) about getting your DH’s and your end-of-life paperwork in place (health care proxy, living will, durable power of attorney, and will/executorship), while your DH can still (sort of) understand what’s going on and produce a signature.

My DH and I put this off almost too late: Three weeks after we got the final paperwork done, he couldn’t sign his name anymore.

A CELA can also give you the appropriate advice for the state where you live re: long-term care Medicaid. Sooner or later, you may need to consider long-term care for your DH, and this advice will be vital. Even though my DH had long-term care insurance, he was within 6-8 months of exhausting his LTCI funds at the time he died, so I was about to sit down with my attorney and my financial advisor and start working out the Medicaid issues.

Medicare, unfortunately, does NOT cover long-term care.

I hope I haven’t gone on too long about all this, and I hope that at least some of what I’ve said will be helpful to you. What I’ve been trying to say = what I wish I’d known when I was starting out on the AZ journey with my DH.

With heartfelt best wishes, A. Marie

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A postscript after more correspondence with Shelagh

Since I wrote the advice above, I’ve heard back from the original questioner, and I feel I need to add a few things.

First, she mentions that she is in Canada–so it’s clear that our wonderful international readers will need to adapt my advice above about paperwork, certified elder care lawyers (CELAs), and Medicaid/Medicare to the legal, governmental, and financial situations in their home countries. My apologies for my temporary lapse into US tunnel vision!

Second, Shelagh does seem to have most of the major things pretty well in hand (legal, financial, etc., as applicable in Canada). But I completely agree with her that it’s the day-to-day issues (laundry, etc.) that can drive us caregivers batty trying to maintain the balance between what our loved ones can still do vs. what just isn’t working out.

Shelagh offers this excellent advice: “I work hard at supporting his remaining independence, so perhaps will make sure our budget is a bit more generous in areas like this.”

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A. Marie, thank you for sharing this with us! You navigated a tough road with grace and courage, and I appreciate that you want to help others who are also traveling this path. 

Readers, if you have other helpful advice for Shelagh, do chime in! 

P.S. Shelagh also emailed me this little tidbit:

We got our life insurance years ago, so when they mentioned that it included critical illness coverage, I couldn’t have imagined a time when we would use it. Yet here we are…

My husband’s diagnosis of Alzheimer’s is on the list, so I applied and (after quite a bit of paperwork from me and the doctor) received. We haven’t used it yet but took your advice to look for a high-yield savings account (Kristen here: I recommend CIT platinum) so that it’s readily available when we need it, for either his care and/or a special trip.