Newswise — Hal Flynn is coming to grips with a tough and heartbreaking decision he hoped he would never have to make. Due to his wife Carolyn's increasing dementia caused by a microvascular disease, Hal has decided to move her to a nearby assisted living facility where she can receive round-the-clock care that he cannot provide in their home.
"She's finding life to be challenging, even the basics such as bathing, tooth brushing and hair combing are difficult," says Flynn. "This bothers her because for a moment she realizes 'hey, there's something wrong with me'," he continues.
Dementia is a fate that faces many of us as we age. "Currently, about 4.5 million Americans are struggling with Alzheimer's disease -- the most common and well known form of dementia," explains Norman Foster, M.D., director of the Cognitive Disorders Clinic at the University of Michigan Health System. "And, unless we find more effective treatments, this number is expected to triple in the coming decades as baby boomers age."
As Hal and Carolyn Flynn face this major life change after 51 years of marriage, he wishes they had done more personal and financial planning. "Like so many other things in life," Flynn says, "you know it's out there as a possibility somewhere, someday, but whoops, all of a sudden it's here."
Foster says the Flynn's are not unique " many older Americans have not adequately planned for living with such a costly and devastating illness. "But it's critical for all of us to plan for this type of future care, both financially with a lawyer or financial advisor and through stating our wishes to family members, long before dementia takes hold," he advises.
According to Foster, Alzheimer's disease is one of the most expensive diseases, particularly to patients and their families, because the associated costs are not paid for by most health insurance, Social Security or Medicare.
"Alzheimer's patients can expect to incur between $250,000 and $400,000 in medical bills over the course of this chronic illness that can require many years of care."
That's why experts urge that planning begin in middle age when affordable long-term care insurance can be obtained.
"Planning back when we were in our 50s, and so on, was not something that we did," says Flynn. "But as we've traveled this track and realized the financial burden that a family has, I wish we had done a little more to be in a better position to take on these very heavy expenses. You never know what's going to happen in the future, but doing some good planning could make a big difference," he says.
Receiving a diagnosis of Alzheimer's disease is stressful for patients and families, and also for physicians says Foster. "It's important to take it all in and go through a grieving process. Then think again, and start again to build the new life -- the altered life -- that occurs with this disease."
With dementia, there are three key questions to answer: who will be responsible and named as the patient's durable power of attorney or 'advocate'; where will care be provided; and how will the financial needs of the illness be met.
"When a person is diagnosed with dementia, we need to get down to the specifics of long-term care planning," says Foster. "It's important to talk about these issues early because patients themselves can have an opinion. Their wishes can then be carried out, which is often very reassuring."
Foster also recommends that family members become involved early in the process so that they can adjust more slowly to the changes and increasing demands that will be made on them. Unfortunately, dementia often affects patients' judgment and insight. They may not recognize the seriousness of their condition and may resist planning, he says.
"Even if it's against the patient's wishes, family members may need to intervene " meet with the physician and perhaps social workers to understand what their responsibilities may be," explains Foster. "It's also important for family members to identify and utilize community resources early and effectively to delay the need for institutional care, which is so much more expensive," he advises.
Community activities, such as adult day care or senior programs, can be critical in keeping patients mentally, physically and socially active. "These are the things that give meaning and purpose to living and improve quality of life," says Foster.
With the Flynn's, Hal made it his mission to take care of his wife. He also had caregivers coming in the mornings to help her with bathing and getting dressed. "I wanted to keep her home as long as possible, and so with that support, we've been able to make it to this point," he says. "This point being the realization that her needs will be better met in an assisted living facility."
"Assisted living can be a great service for people who need support in their care," says Foster. "There are other people to be with in an assisted living facility and staff can provide 24-hour-a-day supervision, whereas families may have difficulty doing that."
"Now I'll be in my apartment, and she'll be in her apartment five miles away," explains Flynn. "Having had our 51 years together, it's going to be a challenge but I think that as we look at our lives, I've always felt that it's important to make each minute count.
"And I think Carolyn is facing this with great determination, which is something she's been known for all these years."
For patients with Alzheimer's disease or a related illness
-Talk about modifications in lifestyle that are needed-Plan for modification in the future if symptoms worsen-Determine who should have responsibility for financial and health decisions-Discuss options for where care can be provided now and if symptoms worsen-Review financial resources for care and decide how best they will be used during the entire course of the illness-Involve as many family members as possible early, even if there are only minimal needs
For people entering middle age
-Consider long-term care insurance-Plan for the unknown by reviewing financial resources for chronic illness and naming a health care advocate-Discuss wishes with family members
For more information, visit the following web sites:
U-M Health Topics A-Z: Memory and Aginghttp://www.med.umich.edu/1libr/aha/ummemory.htm
U-M Health Topics A-Z: Alzheimer's Diseasehttp://www.med.umich.edu/1libr/aha/aha_alzhdis_crs.htm
U-M Health Topics A-Z: Caregiver Stresshttp://www.med.umich.edu/1libr/aha/umcarestress.htm
Medicine at Michigan: Scanning for Alzheimer's Diseasehttp://www.medicineatmichigan.org/magazine/2003/spring/huron/10huron.asp
Alzheimer's Disease Education & Referral Centerhttp://www.alzheimers.org
American Association of Homes and Services for the Aginghttp://www.aahsa.org
Assisted Living Federation of Americahttp://www.alfa.org
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