Wednesday, May 21, 2008

Should I Move in with Grandma?

This blog post is excerpted from my book The Spiritual Journey of Family Caregiving. Buy it directly from me for $14.95.

I’ve had a number of young people in their 20’s or early 30’s decide to take on the caregiving of a beloved grandparent while staying in the grandparent’s house. Because the cost of housing is so high in the Santa Cruz area many people think doing caregiving in exchange for housing is a good deal. Grandma gets in-home care for free, the rest of the family doesn’t have to worry about her, and the grandchild has a place to live for free while figuring out what they’re going to do next. Everyone wins, right? Not so fast! The typical scenario goes like this:

Grandma has been living at home without supervision for a long time but then does something that scares the family often enough that they decide she needs more help. They offer this great arrangement to a granddaughter who is currently unemployed, just got divorced or never married and has no children. She’s the one person in the family with the fewest responsibilities and the greatest need, and she loves grandma, so she says yes. Nobody including the granddaughter thinks that grandma needs more than a few hours of assistance a day because, after all, she’s been living alone up until now. It looks like a pretty easy assignment.

So granddaughter moves in and the first thing she sees is that it takes grandma three hours to take a shower, get dressed and have breakfast (if she does any of these things at all.) Nobody has been around to see this and grandma always said she was fine and didn’t need any help. She was always dressed by the time the family saw her and she still had her social skills except for the obvious memory lapses so it appeared everything was going okay. But now granddaughter sees how hard things are for her and thinks, “Oh my goodness, this is terrible. I can’t let her struggle like this!” So she does the compassionate thing and helps grandma shower, get dressed and undressed and makes all her meals in addition to whatever else the family assumed she’d be doing.

Then granddaughter finds grandma’s handbag in the dishwasher when she’s cleaning up one day. She sees that grandma cannot remember the sequence of events needed to make a peanut butter sandwich. She sees that grandma doesn’t remember how the microwave works and leaves the heat turned up on the stove all day or the water running. Not only that, grandma starts demanding more and more attention—some of it she needs, some she just expects, sometimes it’s once or twice in the middle of the night. Sometimes she doesn’t know who the caregiver is and yells at her for invading her home or accuses her of stealing items she continually misplaces. Granddaughter was only supposed to do some light housecleaning, make sure medication was taken correctly, make the evening meal and be available if grandma needed her at night. She was going to take community college classes or get some job training but now she’s afraid to leave grandma alone during the day. Can someone who acts like this be trusted alone by herself? Could she even remember to dial 911 in an emergency? In almost no time at all the caregiver is a prisoner in the home, she has no time to do what she needs to do about her own life, she starts asking for help, and the family doesn’t understand why.

Then I hear the following complaints: “What’s her problem?!! She has free room and board! I have to work hard to put food on the table for my family and all she has to do is sit around and give grandma her meals and medication. Grandma was getting dressed by herself before! She must be making her dependent. And, personally, I think she’s just trying to take advantage of all of us. Grandma says she’s been stealing from her! Can you imagine that? The nerve of her! She just wants a free ride!” This is not a win-win situation.

Before arrangements like this are made the family needs to know a few facts.

First, everyone needs education on the typical course of the illness Grandma is diagnosed with. Read The 36-Hour Day or some other comprehensive dementia-care classic. Even those who don’t plan to do any hands-on care should know what kinds of things the hands-on caregiver is likely to encounter so they know what to expect.

Second, it’s important to be aware of the value of the services a live-in caregiver provides. One home care agency we work with (in Santa Cruz) charges $265 a day for a 24-hr live-in assistant. The same agency charges $18/hr for shorter lengths of time. Other homecare agencies charge a lot more. If you advertise through the newspaper you might find an independent home-care worker who will charge $12-15/hr but no matter how you do the math, daily live-in help is worth a lot!

But getting free room and board is worth a lot, too, you say? Again, let’s do the math! A typical studio apartment or small one-bedroom in the city of Santa Cruz rents for between $850-1200 a month. Shared housing (two or more people sharing a multi-bedroom house) runs between $550-800 per bedroom (although a few “bargains” exist in converted storage sheds or by choosing to live in a more remote or run-down location.) If the caregiver has a private bedroom, all utilities paid, and access to the entire house and yard, in Santa Cruz that work exchange could be worth about $750/month or more. At $15/hr, $750 will buy you 50 hours/month of homecare services or 12 hours/week. In lower rent districts, the number of work exchange hours would be even less. But this is family, you say? OK, but even if the service is valued at the minimum wage of $6.75, that’s 111 hours/month or less than 25 hours/week. Under any circumstance, for their basic health and well-being, the caregiver should still have a few days or evenings off.

If a family member cannot be trusted to live in their home alone anymore, it’s important to understand that, eventually, more than one person will need to be involved in their care. Live-in arrangements need to include regular time off and, if the time required for caregiving prevents the caregiver from having a normal part-time job, adequate compensation in addition to room and board should be provided to give the caregiver an income and a reasonable standard of living.

1 comment:

Carol D. O'Dell said...

Thanks for this great blog/article about family caregiving.
I cared for my mom full-time--in our home while raising teenage daughters and staying married. And yes, it was a 24/7 job, and even though I was her daughter, there is a "line" when you're a caregiver with "duties."

I also laid down many aspects of my own life in order to do this--my mom had Parkinson's and Alzheimer's, and I was priveledged to be in the position to even have this choice.

Family caregiving shouldn't be seen just as a "given." It's a place of honor and respect, and if the elder/loved one can afford it, the caregiver should be properly compensated. That in no way diminishes the love or relationship you have.

I too, wrote about my journey--and I wrote on a day-to-day basis capturing the range of emotions, thoughts, fears, laughter, and tears that comes with this profound journey. It's our stories and voices that heal us and reach out to others.

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir

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