Help for Caregivers of People with Dementia

Why You Need Help

My cousin, who has worked as a home health care nurse for years, gave me the best advice I received about care for Alzheimer's loved ones. She told me, "You be the one who loves them. Let the professionals do what they can do. You do what only you can do."

Source

What Only You Can Do

As the loved on of the person experiencing dementia, you are the only one who can:

  1. Recognize the signs and symptoms as a disease, and not a part of who they are.
  2. Make sure they have the correct diagnosis and testing needed.
  3. Help them remember their past life.
  4. Give them the love that comes from your personal relationship.
  5. Help understand what they are thinking and feeling.
  6. Be their advocate in all situations.
  7. Help them to understand and accept what is happening.
  8. Offer unconditional love and acceptance.
  9. Make decisions about health care, long-term care, finances and estate.
  10. Prepare them for each new stage.

What can Professionals Do?

  1. Help you and your loved one understand what is happening.
  2. Take care of medical needs which are difficult to do in home care.
  3. Give medications which help retain memory, or have less agitation about memory loss.
  4. Give relief from caregiving.
  5. Concierge for seniors can help with other life tasks like cooking, cleaning, laundry, and errands so that you can focus on caregiving.
  6. Home health care advocates can help you devise strategies to manage behavior issues.
  7. Home relief help can give you time to be away from caregiving tasks so that you can get things done or just relax.
  8. Long-term care facilities can help keep your loved one safe, healthy and on a good daily schedule of eating and sleeping so that you can focus on loving them and caring for their emotions.

How to Learn More

Researching about this disease, I've learned many things I wish I'd known when we were taking care of my husband's parents.

Knowledge is a key to having power over our circumstances. When you know what to expect and understand that behavior is normal for a person with memory loss, it can prevent you from feeling overwhelmed and help you know when to get more help.

I struggled to find good books at our library and local bookstores, so I've included links for the books my husband and I found most helpful. Whether you research online, read some of these wonderful books, or join an Alzheimer's support group, you will feel encouraged, strengthened and motivated in your task of caregiving for your loved one the more information you get about this disease.

Long Term Care Can Be a Loving Choice

Nursing Home Care may be best choice if your loved one needs regular medical attention.
Nursing Home Care may be best choice if your loved one needs regular medical attention. | Source

How to Talk With Your Loved One

A person with dementia has wants, desires, fears and thoughts which are real and vivid. Sometimes their inner life is distorted by hallucinations or an inaccurate perception of reality. My husband's grandmother would regularly call the police to report intruders in her yard who were not really there. My father-in-law often refused to get dressed because he feared things we did not see.

Sometimes, there is nothing you can do to calm the negative perceptions of a person. What you can do is to try to understand what is happening inside that person's brain. The wonderful book Learning to Speak Alzheimer's offers a full explanation of how to do that. The author is a woman who learned how do do this through her own journey with a husband who had early onset Alzheimer's. Caring for him and seeking to understand him, she devised a new way to interact with a person dealing with this disease which is now modeled in many places. After her husband's death, she continued to advocate for this humane and sensitive method of interacting. I highly recommend this book for a full explanation of her ideas and methods.

My Family

My in-laws and my children in the middle of our journey of caring for them.
My in-laws and my children in the middle of our journey of caring for them. | Source

What You Can Do

Caregiving can be stressful but it can also be a moment in time which helps you have insight into yourself and into your loved one in a very precious way. Although it was perhaps the most difficult thing I've ever done, I feel privileged to have had the chance to care for my husband's parents. What made our journey better was:

  • Researching and learning about the disease is helpful.
  • Being a careful listener and responder to the patient's felt needs.
  • Adjusting the situation to their needs and their declining ability levels.
  • Accepting help available from professionals and friends.
  • Making sure we spent time doing things as individuals, a couple and a family which did not involve doing or talking about our caregiving responsiblities.


A Book You Need

Another very helpful resource is The 36-Hour Day which not only gives information about what is happening to your loved one but tips and resources for individuals and families. I highly recommend this book as the most important resource to read first in your journey. In fact, I now often give it to friends who are just beginning to suspect that a parent or other loved one may be having memory problems because it helps them to start getting the help they need sooner.

How to Keep Healthy

Giving care is emotionally and physically exhausting. Many people become overwhelmed and so stressed that they may have worse health than the one they are caring for. Even though you may feel guilty, you need to give time for yourself. I did not do as good a job of this as I should have. I forgot to remember how many people were depending on me to stay healthy and I let myself get worn down so that I had a six-month fungal pneumonia. Don't let that happen to you! Here are some things to remember:

  1. Go to your regular doctor, dental and eye appointments. Your medical advisers will help you keep healthy. Be sure to tell them about your caregiving tasks and take their advice about how to make sure you are healthy.
  2. Take time every day for yourself to relax and do something you really enjoy like reading, going for a walk, shopping or calling a friend.
  3. Take a break every day. Aim for a short period every day, and at least one longer period once a week. If your loved one can't be left alone, get help. Look for help from neighbors, other family members, church friends, hospice or community volunteers. Don't tell people you are "fine." If they offer to help, then tell them what you need. If you don't have people who will volunteer to help, then hire someone to come at least once a week to watch your loved one while you get away to do something else.
  4. Keep Up Your Personal Interests: If you have a hobby, you may not feel you have time to keep on doing it, but you can still subscribe to a magazine about it to read. Or, if possible, continue your hobby or interest, even if you have to do it less often. You will feel less stress if you have something else to think about.
  5. Don't Neglect Friends: It is very easy to become isolated and feel you have nothing to contribute to a friendship. As a matter of fact, all that you are learning about giving care is very valuable to others, who may need your advice later. Moreover, as you care for someone with memory loss you often become very sensitive to the thoughts and needs of others expressed in gestures rather than words. You are becoming a more astute friend in the process. Let your friends comfort you, give you a place to laugh, and a place to remember you are loved.

Tell Your Story

You have so much to share!I would love to have you give your help, advice, and support to others! Do you have a tip for helping your loved one cope with the disease? Something which prevented wandering, sundowning, obsessing or other difficult behavior? An encouragement or book which helped you? Please share your experiences in the comments section.

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Comments 6 comments

VirginiaLynne profile image

VirginiaLynne 4 years ago from United States Author

rfmorgan--oh, you had a long journey with this difficult disease. It is very true that the hardest part is losing the person. I so understand what you mean about music. I've spent a lot of time singing with groups in nursing homes and I've been amazed that when we sing some old hymns, especially "Amazing Grace" that people who seem completely unable to communicate will suddenly brighten up, lift their heads and sing along. It is a beautiful moment. Thanks for sharing.


rfmoran profile image

rfmoran 4 years ago from Long Island, New York

As my late mother went through her 10 year journey with this affliction, I realized that I had to buy into the fact that Mom was no longer there. Music helped a lot. She could remember the words of her favorite old songs, even. As she forgot me. Beautiful hub voted up and useful.


Esther  Strong profile image

Esther Strong 4 years ago from UK

Some great all round advice here - in particular I think the one about helping them understand and accept what is happening is significant.


cookaholic profile image

cookaholic 4 years ago from Kent UK

Really valid points for all Caregivers, taking care of yourself and having outside interests is so important (that is why I have started Hubbing!)

Caring can also be the most precious and rewarding experience, full of highs and lows, laughter and tears. thankyou so much for sharing your knowledge.


VirginiaLynne profile image

VirginiaLynne 4 years ago from United States Author

Oh billybuc, you have my deep sympathy. I also hate this disease which is why I've been researching everything I can find about preventing it. The good news is that I think there are some significant ways to delay the symptoms of late onset Alzheimer's but I'm not aware of research showing early onset can be helped.


billybuc profile image

billybuc 4 years ago from Olympia, WA

I know much more about this hideous disease than I really want to know. My best friend is 51 and has it, and he is fading quickly. I know it's not rational but I hate this disease. Thank you for some great information; hopefully many will read it and be armed with some tools to handle this should their loved ones get it.

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