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Alzheimer’s Caregivers: Facing Guilt When Others Help

Medically Reviewed by Neha Pathak, MD on October 06, 2020

Most people with Alzheimer’s disease eventually need a level of care that their partner or family members alone can’t provide. Then it’s time to either bring helpers into your home or move your loved one to a long-term care facility.

If you’re the primary caregiver, it can be hard to accept that you need help. Here are some ways to let go of any guilt that you may be feeling.

Believe That It’s for the Best

It was probably hard to decide you need help. But there were probably several reasons:

  • You may not have been prepared to become a caregiver. People with a career in health care will likely have skills and training you don’t.
  • A care facility is better equipped to deal with safety issues that come up as Alzheimer’s progresses, such as aggressive behavior and wandering. And they don’t have potential household dangers like stairs or the stove.
  • Sometimes, people with Alzheimer’s cooperate better with someone who isn’t someone close to them. Things like bathing that may have become a daily battle may now be easier on your loved one.
  • Stepping back from the caregiver role may let you be that person’s child or spouse again.

 

Do Your Homework

If you’re looking for a live-in facility:

  • Learn the options in your area and how they differ, including assisted living, nursing homes, and continuing care retirement communities.
  • Get recommendations from members of your support group, your loved one’s doctor, family, and friends. Does your parent or partner have friends who already live in a particular community?
  • Visit facilities with the person you’re caring for to get a sense of the atmosphere, cleanliness, and style of care.
  • Ask what specific services it offers for people with Alzheimer’s.
  • Find out exactly what is included in the costs and whether any of it may be covered by long-term care insurance, Medicare, or Medicaid.
  • Check with local and state authorities and the Better Business Bureau for complaints against the facility.

If you’re bringing a helper into your home:

  • Get referrals from friends, your doctor, or your local senior center. Call their references.
  • Check for complaints.
  • Make sure they’re licensed, if that’s required in your area, and that they have insurance.
  • Find out exactly what services are included and what they cost.
  • If they work for a staffing agency, ask how it investigates, trains, and monitors its employees.

 

Forgive Your Loved One

It’s normal to sometimes feel frustrated with the person you’re taking care of. You may resent having to make the hard decisions about their care. Someone with Alzheimer’s may lash out at you or hurt your feelings. You may also have unresolved issues about your relationship from before you were the caregiver.

Try to let go of or set aside these feelings for your own sake.

Forgive Yourself

Maybe you feel like you should have done more. You may feel guilty for having normal negative feelings, or for feeling relieved. Accept that you’re only human, and forgive yourself if you think you’ve fallen short. Understand that your health and happiness are no less important than those of your loved one.

Let Yourself Grieve

You may feel some relief at giving up some of the caregiving responsibility. But it also means your loved one’s condition is progressing. Your relationship is changing, and maybe also your vision of the future. It’s OK to grieve for them.

Accept the Loss of Control

It’s scary to turn over the responsibility for care of a loved one to someone else. You probably set up routines and have a certain way you like things done. The new caregivers will do things their way. Remind yourself that that’s OK.

Understand the Transition Will Take Time

It may be tough for both of you to adjust to the new arrangement. The transition may take time, but you can help it go smoothly.

  • Your loved one may resist bringing a “stranger” into the house. Stay around while they and the new caregiver get to know each other. Explain how you usually do things.
  • If they’re moving to a new living arrangement, plan to visit often, at least for the first several weeks. They’ll be less likely to feel abandoned, and you can see how they’re adjusting.
  • Get to know the staff at the new facility. Share information about your loved one, and watch for signs that they’re getting what they need. Building a relationship with the new caregivers can reassure you that your loved one is in good hands.

 

Get Support

Involve other family members in the decisions about your loved one’s care. Find someone you can talk to about what you’re going through, whether it’s a family member, friend, or therapist. There are many support groups for caregivers. Talking with people in similar circumstances can make you feel less alone and give you tips for managing your situation.

WebMD Medical Reference

Sources

SOURCES:

Mayo Clinic: “Alzheimer’s and other dementias: Long-term care options.”

National Institute on Aging: “Getting Help with Alzheimer’s Caregiving,” “Finding Long-term Care for a Person with Alzheimer’s,” “Taking Care of Yourself: Tips for Caregivers,” “Alzheimer’s Caregiving: Caring for Yourself.”

American Brain Society: “Caregiver Guilt.”

Family Caregiver Alliance: “Residential Care Options: The Right Time,” “Caregiver Health,” “Hiring In-Home Help,” “Home Away from Home: Relocating Your Parents,” “Ten Real-Life Strategies for Dementia Caregiving,” “Residential Care Options: Caregiving Doesn’t End When Your Loved One Moves.”

British Medical Journal Open: “Behind the smile: qualitative study of caregivers’ anguish and management responses while caring for someone living with heart failure.”

Alzheimer’s Association: “Caregiver emotions.”

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