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Preparing for the Role of a Dementia Care Partner

by Martha Stettinius, Dementia Expert
April 23, 2014

Question: We just found out that my husband has early-stage dementia. This news is a big shock to both of us and I know our relationship is going to go through some changes. How should I prepare myself?

Answer: I’m very sorry that you are both facing this diagnosis, as it is indeed the beginning of what will most likely be a challenging journey. I am glad, however, that you have already sought help as your husband’s care partner. So often we do not realize that we need support until we are exhausted and burned out.

First, let me note that I use the term “care partner” instead of “caregiver” because if you think of yourself as a care “partner” for your husband, it will remind you that he is much more than a “dementia patient.” A person with dementia continues to have strengths and abilities, to experience a full range of emotion, and to be able to give as well as receive care.

How can your husband continue to care for you? In early-stage dementia, for example, your husband may be able to help make some decisions about his care, so that those decisions do not fall entirely onto your shoulders. As his dementia progresses, he will most likely be able to care for your emotional needs at times by listening to you or sharing a hug. Even if he loses his ability to speak, as is common in the later stages of dementia, you will find ways to communicate with each other and share affection.

At some point you may feel as if you’ve lost the husband you knew, the vital, competent man you fell in love with, and you may feel what is often called “living grief.” But you may also find that the essence of his spirit remains beneath the dementia, and enjoy ways to connect with that spirit.

For now, though, I suggest concentrating on these concrete tasks:
•    finding support for yourself and for him
•    learning more about dementia
•    talking with him and his doctor about some specific questions about care (below), and
•    talking with an elder law attorney and a financial advisor.

1. Find support for yourself

No one can care for a person with dementia all by herself around the clock for a long period of time. It’s physically and emotionally demanding, and you need to give yourself regular breaks and share the work with others. I would start by contacting your county’s Office for the Aging about receiving free caregiver counseling or joining their caregiver support group. They can also tell you what other support services are available in your community, such as respite services and workshops such as Powerful Tools for Caregivers. (You can find your local OFA here.) Your local Alzheimer’s Association may also provide caregiver support groups. You may also want to consider hiring a geriatric care manager who specializes in dementia, to guide you through the decisions inherent in dementia care, or to help you talk with siblings or other family members about sharing the care. Geriatric care managers cost between $50 and $100 an hour, and you can find one here. Online, you can find free caregiver support not only here on eCareDiary, but in Facebook groups for people with dementia and their care partners such as USAgainstAlzheimer’s Community, Memory People and Dementia Aware. I also recommend the book Share the Care, a tool to help you build a circle of support for yourself and your husband among family, friends and neighbors.

As you find support, remember to take care of yourself first. That’s difficult to do, I know, but you will need to get enough sleep, exercise, good nutrition, and time to yourself in order to care for your husband over the long haul. Relaxation techniques such as meditation and deep breathing can help, as can writing in a journal, and remembering to laugh.

And keep in mind that at some point, for your health and well-being as well as his, you may need to consider placing your husband in a facility. Instead of promising him that you will never do that, promise him that you will always make sure that he receives the care he needs as his needs change. Try to let go of any guilt you may feel about the decisions you will be called to make.

2. Find support for your husband

Unfortunately, in many areas it’s harder to find a support group for a person with early-stage dementia than it is to find a support group for their care partner, but that’s changing slowly. Ask your local Alzheimer’s Association chapter if they offer support groups for people with early-stage dementia, or if they know of any “Alzheimer’s cafés” (also called “memory cafés”) in your area where people with dementia and their care partners can socialize and support each other. Your Office for the Aging should also be able to tell you if your community has an adult day service center where your husband could spend a few hours a day, giving him the stimulation he may need, and you a chance to rest or do errands. He may also benefit from some counseling at your Office for the Aging, or with a geriatric care manager.

3.  Learn more about dementia

The more you learn about dementia, and especially about how to communicate with your husband as the disease progresses, the more confident you will feel as his care partner. You can learn a lot through your local Alzheimer’s Association or Office for the Aging, or by reading some of the books about dementia care listed here.

4. Talk with your husband’s doctor

If your husband has been told simply that he has “early-stage dementia,” it might be helpful to talk to your husband and his doctor about the following questions:

a. Should your husband have a full neuropsychological evaluation with a neurologist specializing in dementia? Such an evaluation, plus some other tests, can help narrow down the diagnosis from a generic “dementia” to a more specific diagnosis of Alzheimer’s disease (the most common type of dementia), vascular dementia (from tiny strokes, the second most common form), or one of more than 100 conditions that cause dementia. Testing will also help rule out causes of dementia that are reversible and treatable, such as depression or a vitamin deficiency.

b. If a neurologist suspects Alzheimer’s disease, should your husband be started on one or more of the medications approved to lessen the symptoms of Alzheimer’s disease? No medications exist to slow the progression of Alzheimer’s disease, but a few medications may lessen the symptoms for about 3 years. (Note that research suggests that a combination of two types of medications—Namenda plus a cholinesterase inhibitor such as Aricept—is more effective at relieving the symptoms of Alzheimer’s disease than treatment with only one type.)

c. Would your husband be interested in joining a clinical trial? Learn more about the benefits of joining a clinical trial here.

5. Meet with an elder law attorney and a financial advisor

An elder law attorney can help you complete important documents such a Durable Power of Attorney (“durable” because it stays in effect after your husband can no longer make decisions because of cognitive impairment), a Living Will (to clarify his end-of-life preferences), and a Health Care Proxy (for medical decisions) [link]. An elder law attorney or a financial advisor should also be able to help you with Medicaid planning. (Even if you have substantial savings, dementia care can last for years, and you may need to apply for Medicaid at some point, as I had to for my mother.)

As you face your husband’s diagnosis, be gentle and patient with yourself. You will never do things perfectly as a caregiver, and you will likely feel resentful, angry, depressed and guilty at times. All of that is normal. Take your caregiving journey one day at a time, finding support and caring for yourself. Try to slow down a bit and enjoy simple pleasures together with your husband that you both enjoy, whether it’s a walk outside, listening to music, or just holding hands. Living with dementia is a long, hard road, full of challenges and difficult emotions, but life does not end upon diagnosis, and neither do moments of joy.

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Martha Stettinius was a “sandwich generation” caregiver for 8 years for her mother with dementia, and is the author of the book “Inside the Dementia Epidemic: A Daughter’s Memoir.” An editor with a master’s in English Education from Columbia University, she blogs for and serves as a volunteer representative for New York State for the Caregiver Action Network.

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