Things I Wish I'd Done

Things I thought I knew about him but without him there to verify it, wasn’t really sure. Dates and papers I discovered too late that I’d need—and had to guess or do without. Some cost me money. Some just cost me peace of mind.

It is the same for a caregiver of anyone with dementia. Ask early on. Get it in writing. Make lists and store them in safe places. Safe and KNOWN places. Tell another family member. Share a copy with your attorney. Before my sister died, we’d done much of this and then I stored it all in a safe place. I didn’t tell anyone else where it was. After all, I knew I’d be there when it was needed. However, in the stress of her dying, the place was so safe that I forgot where it was. Luckily, she had also shared a copy of her will with her attorney. Then when we cleaned out her home, we found her papers right where I’d put them—in the back of her freezer. (That’s actually a good place to store papers by the way. It keeps them safe in case of fire and it isn’t a place thieves tend to look.)

While Lewy is still mild and your loved one is able to participate, make up your wills, and get durable powers of attorney for both financial and health care and a living will. Make lists of all legal papers for things such as deeds, insurances, military discharge, birth, marriage and divorce and show where each is kept. List all your financial holdings, including real estate, stocks and bonds, and bank accounts. Add a list of all of your digital information: the ID and passwords for bank accounts and other online websites you will want to know later. This last has become more and more important. For instance, if you don’t have a password to your loved one’s Facebook page, you will not be able to access any of the information on it nor will you be able to delete it. Once you have all this information, do not forget to share it with at least one other person. Don’t make my mistake!

You should also talk together about what should happen if you are unable to be the physical caregiver. This is usually a difficult discussion and therefore avoided. However, fulltime caregivers often die before their charges do. In other cases, they become too ill for them to care for their loved ones safely. Emphasize that such a change would be so that someone else could do the heavy lifting, thus making it possible for you to preserve your health and continue to care for him. Talking about this before it is needed will make the transition to a care facility much easier if and when it is needed. You will have a better idea of what your loved one prefers. More importantly, it will remain with your loved one in some form and decrease some of their resistance.