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The Ribbon - Care for Caregivers

Preparing to be a Caregiver

It isn't easy to bring a loved one with Alzheimer's disease into your home. Do not do it impulsively. Those who cope most successfully plan the transition carefully and take a good deal of time--several months--to adjust to the idea and to allow everyone else in the household and extended family to adjust as well.

Consider:

  1. Division of responsibilities.
    • Who is going to take care of what?
    • Are you prepared to shoulder the entire burden?
    • Or are your spouse, siblings, children, and others willing to help?
    • Can you arrange for other help? If possible, do this in advance.
  2. Your marriage.
    • What does your spouse think of housing someone with Alzheimer's? Even if your spouse is very supportive and helpful, all the added responsibilities and stresses and strains are bound to affect your marriage. Can you handle it?
    • Really listen to how your spouse feels. Consider discussing your plans with a marriage counselor, clergyman, social worker, or other professional who can help you sort out how caregiving might affect your marriage.
  3. Your children.
    • Kids will be kids, and a lot of what kids do can be very upsetting to people with Alzheimer's disease. Likewise, a lot of what people with Alzheimer's do can upset kids.
    • How do your children feel about sharing their home with a mentally impaired relative?
    • How will their friends react?
    • How will the presence of the affected individual affect your relationship with your children?
  4. Your siblings and other relatives.
    • You take in your loved one with Alzheimer's, and your siblings commit to helping out. Then they don't come through the way you thought they would. You confront them. They insist that they're doing everything they agreed to do. Meanwhile, you're stuck doing a great deal more than you thought you would. How would you feel?
    • Or, conversely, your siblings spend more time at your home than you'd planned on. Perhaps they don't trust you to care for the affected individual. How would you feel about that?
    • Or perhaps their constant presence puts a burden on you and your immediate family. How would you deal with this?
  5. Your job.
    • Can you provide quality care and work at the same time?
    • Even if you can--and many people cannot--having a loved one with Alzheimer's disease at home can prove quite distracting while you're at work. Can you handle that?
    • Do you have the kind of relationship with your boss and co-workers that would allow you some flexibility in scheduling? You might consider evolving to part-time employment, with part-time help.
  6. Your home.
    • Do you have room for the affected individual?
    • Do you have adequate furnishings?
    • Bathroom facilities?
    • Are you sacrificing a den, family room, study, or guest room to house the person with Alzheimer's? If so, how do you plan to cope with the loss of that space?
    • The long-term presence of any new person changes household dynamics in many ways. Try to anticipate as many as possible. Chances are, you won't be able to anticipate all of them.
  7. Your finances.
    • It's expensive taking care of a person with Alzheimer's--and as the affected individual's condition deteriorates, it gets even more expensive. Do you have the financial resources to cope?
    • Are other family members willing to contribute?
    • Does the affected person have financial resources you can draw on?
    • Meanwhile, you may have to cut back on work time, or stop working altogether. Can you afford to do that?
  8. Your leisure time.
    No doubt about it: Caring for a loved one with Alzheimer's cuts deeply into your free time. As the disease progresses, you may have to severely curtail relaxation time, hobby time, gardening, dates with friends, outings to cultural events, etc. Could you cope with that?
  9. Your sleep.
    Like newborns, people with Alzheimer's often do not sleep through the night. That means that you may not be able to, either. Sleep deprivation causes irritability, depresses mood, reduces energy, threatens sense of humor, and makes daily stresses feel even more challenging. How do you plan to cope?
  10. Your things.
    People with Alzheimer's disease don't mean to make messes. They can't help themselves. You can understand that intellectually, but what happens when you find your jewelry strewn about the house? Or when your spouse finds a crafts project destroyed? Or when your daughter finds her closet a shambles?
  11. Your social life.
    There's bound to be less of it. Friends may be put off by the presence of your loved one. They may call and visit less, and you may have less time to call and visit them. How would that make you feel?
  12. Your neighbors.
    Unlike a spouse, neighbors don't have veto power over whom you bring into your home. But the presence of someone with Alzheimer's disease in the neighborhood affects them as well.

    Their concerns are legitimate: The affected individual might wander into their homes, or step in front of their cars, or intimidate their children. How do you plan to keep the peace?
  13. Your own physical and mental health.
    The responsibilities of caring for a loved one with Alzheimer's disease can be overwhelming. While you're taking care of the affected individual and managing all the changes that means for your home, family, and finances, you must also carve out time to take care of yourself.

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