Q: My husband is in the in-between stage of dementia — driving (just), shopping, taking stuff to the dump. Not ready for a locked unit but unable to handle everyday things...

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Q:

My husband is in the in-between stage of dementia — driving (just), shopping, taking stuff to the dump. Not ready for a locked unit but unable to handle everyday things without someone around. He insists there’s nothing wrong.

He doesn’t heed his doctors, his children or me, so I have no idea how I’ll be able to get him to stop driving, remove the many guns from the house, persuade him to get hearing aids, have him use earphones for the TV, use soap when doing the dishes, not fight me on taking his meds, and on and on.

It’s awful to think this, but I almost look forward to the time when his capabilities diminish!

Hiring others isn’t as simple as it sounds: How do I get him to accept a third person in the house? I tried this recently and it was a fiasco. Staying here ostensibly as a friend needing a place to stay while I was away, the caregiver fled in the night when my husband proceeded to get drunk, took off his clothes for bed, then tried to embrace her, confusing her with me. I returned to chaos.

My question: Am I prepared to change my whole personality to accommodate the changes in my husband?


A:

My quick answer: no. You can’t change your personality, even if you tried. My long answer: Don’t do this alone. Caring for someone with dementia is one of the hardest things we’ll do — ever — in our lives. Nothing prepares us for it. You can’t change you or him, and he can’t change how he’s behaving (since it isn’t on purpose). So you need to get advice from someone who can help you experiment, monitor the results, then change course as needed — and knows the unique difficulties of dementia.

Wishing for your husband’s abilities to decline is legitimate. The “in-between stage of dementia,” as you so aptly put it — when he’s still socially appropriate but can’t do much without constant guidance and behaves like a ticking time bomb — is truly one of the most difficult problems in all eldercare. When he’s past this point, you’ll have other heartbreaks, but your life will be calmer. I consider this period the toughest time, and you need help getting through it.

So, where to go? There are several choices, depending mainly on where you live, with rural communities having the fewest options.

The first place to start is your local Senior Information & Assistance (I&A) office. Located throughout the United States, they provide free information about services available for older people in their communities. In particular, says Roy Walker, Executive Director of the office that serves Clallam, Jefferson, Grays Harbor and Pacific counties, “This woman might benefit from our Family Caregiver Support Program, which will send a staff person to work with her directly. Together they can strategize ways to gain the husband’s cooperation.”

To find a Senior I&A office anywhere in the United States, contact the Eldercare Locator office at 800-677-1116 or go online to www.eldercare.gov. Most offer additional assistance through a Family Caregiver Support Program.

A second excellent resource is the Alzheimer’s Association. Says Rowena Rye, Director of Community Resources for the chapter serving Western and Central Washington in Seattle, “Our Helpline staff is available 24/7 — to help families process what to do. We’re a good place to begin because we have a specific orientation to the difficulties of dementia.”

The Seattle office can be reached at 206-363-5500 or 800-848-7097, or online at www.alzwa.org.

A third option is to hire a geriatric care manager — a new kind of consultant who’s an expert about available resources and practical tips on caring for older people. You can obtain a list of care managers by contacting your local Senior I&A office.

Caregiving is highly stressful, and research shows that older caregivers suffer more depression and illnesses, including premature death, compared to older people who don’t provide care. This is especially true when caring for a demented spouse. Get help. Don’t do it alone.


Dear readers:

My column Dec. 13, 2004, addressed a serious problem: what to do if an older person is unsafe behind the wheel. Recently, I learned about another helpful resource. The Driving Rehabilitation Program, operated through the University of Washington Medical Center, evaluates drivers of all ages to determine whether they have the skills to drive safely. The evaluation has two parts: an in-clinic screening and a driving test. The goal, says Director Frances Tromp van Holst, is to see if, with training, a person can become safe or shouldn’t drive at all.

Neither insurance nor Medicare covers, so the fee, at $231/hour — usually for four hours — is paid out-of-pocket. For more information, call 206-598-5857.

To find similar programs elsewhere, Tromp van Holst recommends calling the Occupational Therapy department in the rehab unit of your local hospital.

Liz Taylor’s column runs Mondays in the Northwest Life section. A specialist on aging and long-term care, she consults with individuals and teaches workshops on how to plan for one’s aging — and aging parents. E-mail her at growingolder@seattletimes.com or write to P.O. Box 11601, Bainbridge Island, WA 98110. You can see all of her columns at www.seattletimes.com/growingolder/.