Dear Cary,
How do I break it to my husband's family that I don't want to care for my mother-in-law as she declines from Alzheimer's? We live next door and she has just been diagnosed. My hubby's three out-of-town sisters will be here for Thanksgiving, so the timing is perfect. I don't ever see her right now, as it is. Though they are nice people, we have nothing in common except my hubby, and I rarely go over there.
How do I put it without being an asshole? Am I being an asshole? I don't care!
Not a Caregiver
Dear Not a Caregiver,
Funny you should ask. May I suggest, first of all, that you not do it the way my family did it?
We did not plan. We did not coordinate. We just reacted to events. And who happened to live closest to my mom? My sister. So who ended up caring for her? My sister. And what has been the result? Not good. Not good for anyone.
But that is likely what will happen to you if you do not take affirmative steps now.
However, if you take the lead on planning for this now, you can both limit your personal exposure and do a service to the family. It's tricky. By acting now, you will appear to be taking the most responsibility while in reality you are taking steps to limit your responsibility. If you do nothing, this eventuality will wash over you and you will be angry and resentful.
You don't have to come off like the asshole who doesn't want to do anything. Instead, you can be the person who gets the ball rolling. Do not couch it in terms like, "No way am I caring for your sick mom." Instead, take steps now to spell out what you are willing to do. In spelling out what you are willing to do, you will also spell out what you are not willing to do.
So here is what I would do first. I would have a lawyer set up a bank account and a trust. I would name it the [Insert Name of Mother-in-Law] Alzheimer]s Care Trust. I would put some money into it. If the mother-in-law has some money to put in it, I would put that money into it. I would also ask for large contributions from all of the family. Make them large contributions, as large as possible. So you start with a good kitty. Then it's just sitting there. It's protected money, set aside for your mom's care. You're all feeling pretty good about it. You've taken a big step.
What else would I do? With the help, perhaps, of someone who has worked with a lot of families of Alzheimer's patients, I would draw up an agreement spelling out what each family member's responsibilities and contributions will be in the event of certain eventualities. Make it detailed. Certain triggering events are likely to occur. The first time she wanders might be a triggering event. The first time she become incontinent might be a triggering event. You would spell out how the care would respond, how the accommodations would be changed or increased, at each triggering event.
Here is another idea. Imagine an agreement whereby each daughter has a commitment of one month a year, total time, to spend either hosting your mom or living at your mom's place taking care of her. With your husband also contributing one month's time, that's four months, or one-third of her care right there. Having decided on that, you could then compute the costs of hiring care for her the other two-thirds of the year, or eight months.
And then make sure there is money in the kitty to pay for that.
If someone would rather contribute money than labor, then that person could pay for one month's care.
If you act now, while the symptoms are just beginning, you will accomplish an important thing. You will set in place the routine. She will come to stay with each of her daughters for some period of time. This will ensure that they see, for themselves, just how difficult it is to care for her as her disease progresses. Everyone will also learn such routines as what flights are good, how the airport trip is, how she tolerates each daughter's house and family, etc.
The duration of these visits may vary. Some daughters may not be able to endure more than three days. But if you spread it out equally in the legal care agreement, then it will be easy to see what a burden it is, and the sisters will be less likely to forget that they have responsibilities. They will be more amenable to negotiating.
I would start all this now. I would get her traveling now. You can say it's so they can spend as much time as possible with their mother while she is still well.
Inertia is your enemy. The desire to believe that things will just work out is your enemy. Reluctance to spend money now is your enemy. The reluctance of your sisters-in-law to face what is coming is your enemy.
You may be able to overcome these obstacles. But maybe not. What happens if you find, by starting out now, that you're just not going to get the help you need? What if it appears inevitable that you are going to become the primary caregiver with no help forthcoming from any of the relatives?
Well, in that case, just suppose, for instance, that a great position were to open up for you or your husband in an area you've always thought of living in but which is just so far away from his mom? Suppose it were an opportunity just too good to pass up? Wouldn't that be interesting? It would be unfortunate, in a way, because you would have to move so far away from your husband's mom -- farther, in fact, than any of the dau ... but such things happen. People get transferred. Opportunities open up. Change happens!
My family did not plan for what was coming; my sister took it upon herself to care for our mom; because of our failure to communicate and plan, the responsibility fell on her shoulders. It is a crushing burden she bears with all the grace she can summon. We four brothers could have done better. It is fair to say that this event and our fractious responses to it have shattered the family. So there is your object lesson. If you do not plan, if you let this awful thing drift into your presence, if you pretend that it is not coming, if you let others dissuade you, then you may allow a catastrophe to visit your family, your husband's family, your home.
So prepare. Plan. Take a leading role. Do what you need to do. Act before events overtake you.
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