Legal Matters for Caregivers

I hate writing about legal issues for caregivers — I get nervous just thinking about them. But if you’re a caregiver now, there are good reasons to feel anxious. Can you confidently predict who will be there to care for you in the future?

Between the Pond and the Woods

Will you be revered and cared for like this 100 year-old bonsai?

In my case, the answer is no. I have no idea who will look after me if I develop my mother’s  vicious form of memory loss. My partner enjoys good health, but he is older than me and pretty lax about planning for the future. I don’t have any kids and, though my sister is younger than me, we could conceivably have dementia at the same time if we follow my mother’s pattern.

Naturally, we are hoping that Mom’s type of dementia — which is rare and has no family trail — will skip over us like one of those bad storms that dropped a foot of snow elsewhere. But we need to plan as if it will happen in order to protect ourselves in case it does.

Many of us may encounter trouble just by living to the age of 80. According to statistics from the AARP Public Policy Institute, there are currently seven caregivers for each person who’s reached the age of 80 or older. However, given our country’s lower marriage rates and smaller families, by the year 2030 there will only be four caregivers for every person who is 80 or older! If you spin the statistical data out even further, it only gets worse. By 2050, there will be just three caregivers for each person over the age of 80.

So what can you do to ensure your wishes will be followed if there is no family caregiver looking after you? Please start drafting an advance directive that will give health care providers a list of your decisions about the treatment you want. It’s also important to create a living will that gives health professionals (and family members) a map of how to implement your treatment preferences if you lose competence or consciousness. The link above leads to documents for the state of Pennsylvania, but if you live in another state, you can probably find a similar resource on your state’s website.

You probably would prefer for treatment decisions to be carried out according to your wishes, rather than imposed by law. Recent incidents like the extraordinary case of Marlise Munoz — who was brain dead, pregnant, and put on life support — illustrate how family members and health practitioners can face terrible conflicts when a patient loses consciousness. You’re not likely to end up in a situation that complex, but you still want to provide a clear set of directions to be followed if you lose the ability to speak for yourself.

Morbid thoughts do not contribute to restful Sundays. But busy as we are, we need to take a few hours to think over such matters and start to draft these documents. If my mom hadn’t thought ahead and planned for every eventuality, my caregiver experience would be much, much harder. Caregiving is already a huge emotional challenge. If I had to answer some of these care questions on her behalf, I’m not sure how I’d manage. I don’t want her disease, but I definitely see the value of following her example.

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