Wednesday, May 28, 2008

Caregiving at a distance: when parents are in denial

The other day I was asked to speak to a large group about stress and stress management. It was not my typical audience. These were professionals of a large company that produces pace makers and other sophisticated medical equipment. Not the usual caregivers or healthcare professionals that comprise my audiences.
In giving my credentials during my introduction, I included my gerontological experience and offered to stay afterwards and talk to any caregivers that had questions or needed guidance. They were a great group and we had a lot of fun. Not surprisingly however, a half of a dozen people approached me afterwards.
A couple of these caregivers brought up a dilemma that I find to be all too common. Of all the possible situations this scenario the one that stumps me the most: What to do when your parent, who obviously needs help, refuses it? There are many variations on this theme. But they all fall under the heading of “stubborn refusal”. As a professional, I can help families in just about any circumstances they find themselves in, but when it comes to that “dig your heels in” kind of situation, it’s the worst.
For example, Margaret who lives 60 miles away from her mother has been trying to get her mom to move in with her for some time now. Mom is 80, getting frail, unable to really take care of herself, as she should. She has fallen a couple of times, once requiring a 911 response, but has had not broken any bones yet. She does not suffer from dementia, but is showing some forgetfulness. I would guess “Mild Cognitive Impairment” (MCI). Mom calls Margaret several times per week; each is a demand for some kind of assistance. Mom can no longer drive safely, and fortunately, out of fear, she doesn’t. However, this is an added burden to Margaret, as she has to make the round trip several times per week to do mom’s shopping, to help her with appointments, help with laundry. You know the drill. As you can imagine, Margaret is exhausted. She has her full time job, her own marriage and her kids with whom she wishes to spend time.
She has asked her mom to move in with her and the family, but mom refuses. She stubbornly clings to that age old mantra so many older adults use, “I’m not going to give up my independence”. Margaret has also discussed a senior community for mom. But that idea meets the same resistance as the first. All the while, mom’s independence is a delusion cultivated by conveniently ignoring the evidence and selfishly continuing to completely wear her daughter out.
There are only a few options open to Margaret, here’s the milder sneaker solution for getting her into a senior community.
Margaret needs to plant a seed in mom’s mind, here’s how. First, Margaret should contact a ‘referral agency’. A referral agency is a free service that helps you find board and care and assisted living communities. Generally, the way they work is you give them a physical description of your parent, a budget range, and preferred location, and they, in turn, give you a list of “communities” that fit your criteria. The next step is to go visit a few senior communities, Alone! Don’t let your parent know what you are doing yet. Once you have toured a few of these places, pick your top two. Next, invite mom out to lunch. Make arrangements with the facility to come for lunch and tour with your mom. As you are driving with mom, tell her that something came up and you need her help. You have a friend who is looking for a place for her mom, and your friend needs your help to check out this place. Explain to mom that you made a lunch appointment and ask her to help you. (“After all mom, it’s a free lunch, what have we got to lose”?)
Make sure you tell the marketing director of the facility what you are up to, so she can play along. (Fear not; they do this kind of stuff all the time). Afterwards, you can pick mom’s brain about what she liked and didn’t like. Beyond that, don’t bring it up again, the seed is planted. It may be months but she will more than likely bring it up again on her own. Don’t be surprised when out of the blue, your mom says “I’ve been thinking about that place we had lunch at…”
Nevertheless, even if she does figure out the ruse, and finds out that you tried to trick her into looking at one “of those” places, the deed is done. Hopefully, she knows you meant well. But if she gets mad, that’s ok too, she will get over it. The important thing is to get her in to see what these communities look like. So many older adults have a warped idea of what they are. You can never hope to see your parent in a safe environment like this until their preconceived prejudices are dispelled.
Some other options are: Get your parent to agree to a temporary stay (a 2-week vacation stay). Or if they are warming to the idea and on the fence, ask them to try it for 3 months and that you will keep their home or apartment available. Ultimately, their health is at stake. That’s why you are pushing for this. The truth is, if they do not take the board and care assisted living option, something catastrophic will happen and they could end up in a nursing home instead…and many consider that a fate worse than death.

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