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Be smart: Plan for your own care needs ahead of crisis

Carol Bradley Bursack, Minding Our Elders columnist

Dear Carol: My wife died of cancer three years ago. Her decline was long and slow, so when the end came there was some relief, along with the agonizing grief. I've slowly recovered enough to enjoy life.

However, I've now been diagnosed with early onset Alzheimer's disease (EOAD). I also have neuropathy, which affects my balance. My wife had a great attitude during her illness, and I'm determined to use her as my example for dealing with my own challenges.

We had no children, and I have no siblings, but I have many wonderful friends who have been helping me with shopping. I've appointed a close friend as Power Of Attorney for health and financial reasons and hired a housekeeper who cleans and does some light cooking. She's wonderful, and we get along great, but the time will come when I will need more care.

How do I start setting up help now, without going overboard and losing my privacy before I need to? PR

Dear PR: I'm sorry about your health issues. This is a tough combination, but I admire your determination to make the best of it. Your attitude to try to match your wife's courage is a loving tribute to her.

It's wise to map out your future care the best that you can. For now, it seems that if your housekeeper is able to gradually give you more time she may become your first caregiver. It could be some time before you need a medically trained person, and you seem comfortable with this woman's help. If she works for an agency, they may be willing to extend her hours for you. If she works for herself, you could talk with her about what she's willing to do.

If your housekeeper can fit in the time take you out to grocery shop, drive you to medical appointments and cook more meals, that kind of help may be enough short term. When you begin to need assistance managing your medications, bathing and getting dressed, you may want someone with more training. Much depends on your comfort level.

You can hire someone with the qualifications that you need through an agency. Look for an agency with a good overall reputation. Ask for references and check them.

Because you have a network of friends, ask them for ideas, as well. If they don't have firsthand information, they can probably ask their other friends. Word of mouth is your most valuable tool when it comes to finding a qualified, reliable agency. The hours for agency people can generally be gradually increased for your needs.

Because you don't have family members to supervise your care, I'd suggest that you should start testing agency employees well ahead of any dire need for them. Find people you trust and whom you enjoy. Then, as your disease progresses, you will not need to be arranging help in a crisis mode.

I understand your wish not to lose privacy too soon. I know that I would feel strongly about that if I were in your shoes. It will be up to you to decide if you can have more privacy with continuing in-home care than in assisted living, but this is the time to look at all options and rough out a thoughtful plan.

I hope that your friend whom you appointed as POA is willing to check on you often enough to make certain that you are getting the care that you need. You have a wonderful attitude and you are realistic that you can't wear out your friends with your daily healthcare needs. This respectful attitude toward your friends' time will help keep them by your side when you need them.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.

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