Caring for a Loved One With Dementia or Alzheimer's Disease

Reviewed Oct 5, 2017

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Summary

To stay strong while you care for someone with dementia:

  • Reframe the relationship.
  • Build new connections.
  • Maintain your own health.
  • Tap into support networks.

You promised to take care of your parent or partner with Alzheimer’s disease, and now you’re wondering how you will survive this responsibility.

True, you love the person you care for, but some days you probably just want to scream.

Not only does caregiving take up much of your time, it’s tough to watch Alzheimer’s disease (AD) or another form of dementia change a person, a little bit at a time.

One day, he seems better, the next day, worse. As the disease progresses, his needs will grow.

But, what about your needs? 

You may have been the patient’s daughter, wife, husband, or son, but now you have a totally different relationship. 

From this point on, you will be challenged both physically and emotionally. But you also will reap the benefit of knowing you eased the journey of someone you love along the treacherous path of physical and mental decline.  

Expect changes in your relationship

This job won’t be easy. No matter what your relationship was before—close or distant—the disease will change it.

AD alters more than memory. Personalities change, subtly or dramatically. Your loved one may change her appearance, her diet or even her name. Once quiet, she may begin to act out in public. If she was combative before, she may become passive now.

There will be days when you won’t recognize this person. He may do things that seem out of character.

If you are waiting for the real mother or uncle or wife to come forward, you may be disappointed. The sad reality is, as time goes by, you may find that person is gone forever. On the other hand, you may also find new reasons to love this person, as new aspects of personality emerge.

Above all, you need to reframe the relationship, anchoring it in the here and now. As your loved one loses the past, so must you. Cultivate new ways to connect, and build a new history in the time you have together, advises psychologist LeslieBeth Wish. 

Your own feelings may change

Wish says no matter how much you care for the person, it’s nearly impossible to be the sole care provider for someone with dementia without experiencing some degree of anger, resentment, or depression.

After all, we are only human, and when we watch someone or something wither and die—whether it is a pet, a job, an important relationship or a talent—we are saddened. We might also be frightened.

“When we’re frightened,” Wish says, “without our knowledge, we automatically call upon our defense mechanisms.”

You might go numb, withdraw your feelings or get angry, since anger is sometimes easier to express than sadness.

Although there is little you can do to change the course of the disease, you can work toward changing the dynamics of your relationship with a person with AD. 

Reframe your relationship

  • Expect your reactions to be both positive and negative. We may want perfection from our parents and partners but if they have AD, we must learn to expect less. Accept your loved one as she is. Don’t be surprised if you are sometimes disappointed or aggravated by her actions. Be open to the possibility that you will come to appreciate your loved one in new and different ways during the course of your caregiving.
  • Give yourself permission to cry or yell. It’s not healthy to bury your distressing feelings, though it is usually inappropriate to express them to a person with dementia with whom you are upset or angry. Go outside and let off steam once in a while. That’s the normal and healthy thing to do, Wish says.
  • Don’t work 24/7. You can’t attend to a sick person’s every need. Set limits. Check on your mom every 15 or 30 minutes, or whatever works to keep her safe and attended. Do not demand of yourself the impossible task of constant observation.
  • Let go of the past. “Don’t think that turning your life over to an ill family member is necessarily going to fix a broken relationship,” Wish warns. “That often doesn’t happen.”

You may have missed the opportunity to make amends or to say the things you’ve always wanted to say. Wish tells caregivers to write letters, make videos, or express their true feelings anyway, even if their loved one cannot fully understand. He will appreciate your undivided attention and you will be transformed as you reconnect with your past in a positive way. Use this method to give yourself the peace and strength you’ll need to move on to the future. Someday you’ll look back and be glad you didn’t let AD rob you of a healing moment.

  • Strengthen your own social support network. Now is a good time to enlist help from a therapist, clergy member, friend, or partner.
  • Deal with your own fears. Don’t wall up your fears. Find a way to express them to yourself or others.
  • Keep up your own physical health. Exercise. Practice good eating habits. Take walks instead of fast-food breaks.
  • Take advantage of available services. Tap hospice or elder care services, volunteers, respite care, social service agencies, and other supportive agencies. If you can’t afford to pay for help, barter something in exchange for a few hours of care. 
  • Budget your time and don’t be afraid to delegate. Let people know what they can do to help, and when. Be resourceful. Want to exercise but can’t go to a gym? Buy a used treadmill and set it up where you can keep your eye on your loved one.
  • Tell others about your situation without giving up privacy. You might not want to tell your friends or co-workers every detail, but give them a heads up. Set limits and boundaries on your time and energy.
  • Learn more about your relationship or family. Put together a scrapbook of memories. Build a family tree. Find out as much as you can about your loved one’s past. Build positive connections while you strengthen your ties to family and widen your support network. 

Resources

Alzheimer’s Association
http://www.alz.org/

Association for Frontotemporal Degeneration
http://www.theaftd.org/

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging, www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease

ALZ Online (online caregiver support), University of Florida, http://alzonline.phhp.ufl.edu/

By Paula Hartman Cohen
Source: LeslieBeth Wish, EdD, MSS, psychologist and licensed clinical social worker, Sarasota, FL.
Reviewed by Rekha Rao MD, VP Medical Director for New Hampshire and Rhode Island, Beacon Health Options

Summary

To stay strong while you care for someone with dementia:

  • Reframe the relationship.
  • Build new connections.
  • Maintain your own health.
  • Tap into support networks.

You promised to take care of your parent or partner with Alzheimer’s disease, and now you’re wondering how you will survive this responsibility.

True, you love the person you care for, but some days you probably just want to scream.

Not only does caregiving take up much of your time, it’s tough to watch Alzheimer’s disease (AD) or another form of dementia change a person, a little bit at a time.

One day, he seems better, the next day, worse. As the disease progresses, his needs will grow.

But, what about your needs? 

You may have been the patient’s daughter, wife, husband, or son, but now you have a totally different relationship. 

From this point on, you will be challenged both physically and emotionally. But you also will reap the benefit of knowing you eased the journey of someone you love along the treacherous path of physical and mental decline.  

Expect changes in your relationship

This job won’t be easy. No matter what your relationship was before—close or distant—the disease will change it.

AD alters more than memory. Personalities change, subtly or dramatically. Your loved one may change her appearance, her diet or even her name. Once quiet, she may begin to act out in public. If she was combative before, she may become passive now.

There will be days when you won’t recognize this person. He may do things that seem out of character.

If you are waiting for the real mother or uncle or wife to come forward, you may be disappointed. The sad reality is, as time goes by, you may find that person is gone forever. On the other hand, you may also find new reasons to love this person, as new aspects of personality emerge.

Above all, you need to reframe the relationship, anchoring it in the here and now. As your loved one loses the past, so must you. Cultivate new ways to connect, and build a new history in the time you have together, advises psychologist LeslieBeth Wish. 

Your own feelings may change

Wish says no matter how much you care for the person, it’s nearly impossible to be the sole care provider for someone with dementia without experiencing some degree of anger, resentment, or depression.

After all, we are only human, and when we watch someone or something wither and die—whether it is a pet, a job, an important relationship or a talent—we are saddened. We might also be frightened.

“When we’re frightened,” Wish says, “without our knowledge, we automatically call upon our defense mechanisms.”

You might go numb, withdraw your feelings or get angry, since anger is sometimes easier to express than sadness.

Although there is little you can do to change the course of the disease, you can work toward changing the dynamics of your relationship with a person with AD. 

Reframe your relationship

  • Expect your reactions to be both positive and negative. We may want perfection from our parents and partners but if they have AD, we must learn to expect less. Accept your loved one as she is. Don’t be surprised if you are sometimes disappointed or aggravated by her actions. Be open to the possibility that you will come to appreciate your loved one in new and different ways during the course of your caregiving.
  • Give yourself permission to cry or yell. It’s not healthy to bury your distressing feelings, though it is usually inappropriate to express them to a person with dementia with whom you are upset or angry. Go outside and let off steam once in a while. That’s the normal and healthy thing to do, Wish says.
  • Don’t work 24/7. You can’t attend to a sick person’s every need. Set limits. Check on your mom every 15 or 30 minutes, or whatever works to keep her safe and attended. Do not demand of yourself the impossible task of constant observation.
  • Let go of the past. “Don’t think that turning your life over to an ill family member is necessarily going to fix a broken relationship,” Wish warns. “That often doesn’t happen.”

You may have missed the opportunity to make amends or to say the things you’ve always wanted to say. Wish tells caregivers to write letters, make videos, or express their true feelings anyway, even if their loved one cannot fully understand. He will appreciate your undivided attention and you will be transformed as you reconnect with your past in a positive way. Use this method to give yourself the peace and strength you’ll need to move on to the future. Someday you’ll look back and be glad you didn’t let AD rob you of a healing moment.

  • Strengthen your own social support network. Now is a good time to enlist help from a therapist, clergy member, friend, or partner.
  • Deal with your own fears. Don’t wall up your fears. Find a way to express them to yourself or others.
  • Keep up your own physical health. Exercise. Practice good eating habits. Take walks instead of fast-food breaks.
  • Take advantage of available services. Tap hospice or elder care services, volunteers, respite care, social service agencies, and other supportive agencies. If you can’t afford to pay for help, barter something in exchange for a few hours of care. 
  • Budget your time and don’t be afraid to delegate. Let people know what they can do to help, and when. Be resourceful. Want to exercise but can’t go to a gym? Buy a used treadmill and set it up where you can keep your eye on your loved one.
  • Tell others about your situation without giving up privacy. You might not want to tell your friends or co-workers every detail, but give them a heads up. Set limits and boundaries on your time and energy.
  • Learn more about your relationship or family. Put together a scrapbook of memories. Build a family tree. Find out as much as you can about your loved one’s past. Build positive connections while you strengthen your ties to family and widen your support network. 

Resources

Alzheimer’s Association
http://www.alz.org/

Association for Frontotemporal Degeneration
http://www.theaftd.org/

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging, www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease

ALZ Online (online caregiver support), University of Florida, http://alzonline.phhp.ufl.edu/

By Paula Hartman Cohen
Source: LeslieBeth Wish, EdD, MSS, psychologist and licensed clinical social worker, Sarasota, FL.
Reviewed by Rekha Rao MD, VP Medical Director for New Hampshire and Rhode Island, Beacon Health Options

Summary

To stay strong while you care for someone with dementia:

  • Reframe the relationship.
  • Build new connections.
  • Maintain your own health.
  • Tap into support networks.

You promised to take care of your parent or partner with Alzheimer’s disease, and now you’re wondering how you will survive this responsibility.

True, you love the person you care for, but some days you probably just want to scream.

Not only does caregiving take up much of your time, it’s tough to watch Alzheimer’s disease (AD) or another form of dementia change a person, a little bit at a time.

One day, he seems better, the next day, worse. As the disease progresses, his needs will grow.

But, what about your needs? 

You may have been the patient’s daughter, wife, husband, or son, but now you have a totally different relationship. 

From this point on, you will be challenged both physically and emotionally. But you also will reap the benefit of knowing you eased the journey of someone you love along the treacherous path of physical and mental decline.  

Expect changes in your relationship

This job won’t be easy. No matter what your relationship was before—close or distant—the disease will change it.

AD alters more than memory. Personalities change, subtly or dramatically. Your loved one may change her appearance, her diet or even her name. Once quiet, she may begin to act out in public. If she was combative before, she may become passive now.

There will be days when you won’t recognize this person. He may do things that seem out of character.

If you are waiting for the real mother or uncle or wife to come forward, you may be disappointed. The sad reality is, as time goes by, you may find that person is gone forever. On the other hand, you may also find new reasons to love this person, as new aspects of personality emerge.

Above all, you need to reframe the relationship, anchoring it in the here and now. As your loved one loses the past, so must you. Cultivate new ways to connect, and build a new history in the time you have together, advises psychologist LeslieBeth Wish. 

Your own feelings may change

Wish says no matter how much you care for the person, it’s nearly impossible to be the sole care provider for someone with dementia without experiencing some degree of anger, resentment, or depression.

After all, we are only human, and when we watch someone or something wither and die—whether it is a pet, a job, an important relationship or a talent—we are saddened. We might also be frightened.

“When we’re frightened,” Wish says, “without our knowledge, we automatically call upon our defense mechanisms.”

You might go numb, withdraw your feelings or get angry, since anger is sometimes easier to express than sadness.

Although there is little you can do to change the course of the disease, you can work toward changing the dynamics of your relationship with a person with AD. 

Reframe your relationship

  • Expect your reactions to be both positive and negative. We may want perfection from our parents and partners but if they have AD, we must learn to expect less. Accept your loved one as she is. Don’t be surprised if you are sometimes disappointed or aggravated by her actions. Be open to the possibility that you will come to appreciate your loved one in new and different ways during the course of your caregiving.
  • Give yourself permission to cry or yell. It’s not healthy to bury your distressing feelings, though it is usually inappropriate to express them to a person with dementia with whom you are upset or angry. Go outside and let off steam once in a while. That’s the normal and healthy thing to do, Wish says.
  • Don’t work 24/7. You can’t attend to a sick person’s every need. Set limits. Check on your mom every 15 or 30 minutes, or whatever works to keep her safe and attended. Do not demand of yourself the impossible task of constant observation.
  • Let go of the past. “Don’t think that turning your life over to an ill family member is necessarily going to fix a broken relationship,” Wish warns. “That often doesn’t happen.”

You may have missed the opportunity to make amends or to say the things you’ve always wanted to say. Wish tells caregivers to write letters, make videos, or express their true feelings anyway, even if their loved one cannot fully understand. He will appreciate your undivided attention and you will be transformed as you reconnect with your past in a positive way. Use this method to give yourself the peace and strength you’ll need to move on to the future. Someday you’ll look back and be glad you didn’t let AD rob you of a healing moment.

  • Strengthen your own social support network. Now is a good time to enlist help from a therapist, clergy member, friend, or partner.
  • Deal with your own fears. Don’t wall up your fears. Find a way to express them to yourself or others.
  • Keep up your own physical health. Exercise. Practice good eating habits. Take walks instead of fast-food breaks.
  • Take advantage of available services. Tap hospice or elder care services, volunteers, respite care, social service agencies, and other supportive agencies. If you can’t afford to pay for help, barter something in exchange for a few hours of care. 
  • Budget your time and don’t be afraid to delegate. Let people know what they can do to help, and when. Be resourceful. Want to exercise but can’t go to a gym? Buy a used treadmill and set it up where you can keep your eye on your loved one.
  • Tell others about your situation without giving up privacy. You might not want to tell your friends or co-workers every detail, but give them a heads up. Set limits and boundaries on your time and energy.
  • Learn more about your relationship or family. Put together a scrapbook of memories. Build a family tree. Find out as much as you can about your loved one’s past. Build positive connections while you strengthen your ties to family and widen your support network. 

Resources

Alzheimer’s Association
http://www.alz.org/

Association for Frontotemporal Degeneration
http://www.theaftd.org/

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging, www.nia.nih.gov/alzheimers/publication/caring-person-alzheimers-disease

ALZ Online (online caregiver support), University of Florida, http://alzonline.phhp.ufl.edu/

By Paula Hartman Cohen
Source: LeslieBeth Wish, EdD, MSS, psychologist and licensed clinical social worker, Sarasota, FL.
Reviewed by Rekha Rao MD, VP Medical Director for New Hampshire and Rhode Island, Beacon Health Options

The information provided on the Achieve Solutions site, including, but not limited to, articles, assessments, and other general information, is for informational purposes only and should not be treated as medical, health care, psychiatric, psychological, or behavioral health care advice. Nothing contained on the Achieve Solutions site is intended to be used for medical diagnosis or treatment or as a substitute for consultation with a qualified health care professional. Please direct questions regarding the operation of the Achieve Solutions site to Web Feedback. If you have concerns about your health, please contact your health care provider.  ©2019 Beacon Health Options, Inc.

 

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