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Tossed Salad Friday

~~ A warm and caring friend voiced a yearning to take care of her widowed sister. This sister suffers from dementia. As my friend spoke to a small group of friends, I interjected, “Don’t do it” a few times. Maybe I actually said it many times. She acknowledged me, but did she listen? Time may tell, but in the meantime, here’s my open letter to her:

Dear Friend,

I know you love your family member. Maybe you even promised this loved one that she’d never go to a nursing home or similar facility. Perhaps you feel an obligation because you didn’t spend as much time with her as you could have, or want to spend her last days on this mortal plain growing closer. Whatever your reason, don’t give in to it!

You won’t get karma points or easier access into heaven because you turn your life inside out and make it revolve around someone else (I actually don’t know if this is true, but I know you can’t disprove it). As the great philosophers the Righteous Brothers sang, “If you believe in forever, then life is just a one night stand.” Don’t spend your metaphorical one night without a home to call your own and a sense of sanctuary.

Dementia is a cruel disease. Whether you’re capable of dealing with its progression, it makes headway through a sufferer’s body and mind. It turns off normal spigots and opens up some unstoppable valves. In a facility, someone trained in dementia care may afford your sister some extended time on one or two or three steps down the rabbit hole, something you may not be able to do.

You can’t reason with a disease. You can’t tell it not to cause incontinence, immobility, and incoherence. But you can have someone else treat, clean, and hoist once these ancillary losses begin.

I know you want to spend time with your sister as she slips away. Do it in an atrium, on a patio, or even in a lunch room that smells like mac and cheese. Don’t do it in your home, where the neediness, the stinkiness, and the hopelessness are ever present, and you can’t separate your sis from the cesspool.

Don’t subject your spouse to watching his home become a residence (this part is easy for me to say, because I’m him). He needs alone time with you, and even if you assure him that there’ll be plenty of that, it’s never enough, especially when the specter of the patient is always about. He’ll be a great guy about it, knowing him, but “in sickness or in health” meant you, not a sibling.

If there will be paid aides coming in and out of your house (there better be, or you’ll burn out), be prepared for small talk, big noises, and the dynamics of dealing with strangers. Is money an issue? I hope not like it became for us, when everything we saved and most of what we could sell was disposed of to try to keep the patient in a no-guilt assisted living facility when her own funds ran out. Because let me tell you, if your sister is under your roof, her needs come first. I hope you never have to put off buying something because first you have to replenish an essential for the patient.

More things to think about: What if something happens to you and you need care but the space is devoted to your sister? What if you shuffle off and leave your sister behind with your spouse? What if something happens to both of you — do you want your kids to deal with their aunt? What if you want to go away and relax, but all you can think about is strangers going in and out of your house? What if an aide doesn’t like your cat or worse, gives your cat something that makes her sick?

I know I sound hard-hearted and very cynical. I’ll own that, because I am. But what kind of friend would I be if I didn’t tell you to think long and hard about bringing someone into your house for the rest of her life and maybe the rest of yours? As my doctor has told me, the patient can live a long time, since she has no stress. On the other hand, the person whose home has turned into Dementia-ville has stress she never imagined before.

You won’t be a lesser person if your sister goes into a care facility. You’re not being selfish if you protect your marriage and your home — a haven from the worst this terrible world throws at us. Visit your sister every day. Put up photos of the family on her night table. Take her out to lunch. Let me make her a blanket. Just don’t turn your life over to your sister. Please.

Dasvidaniya. Have a great weekend. 



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