VirginiaLynne was a caregiver for in-laws with Alzheimer's, and she shares her extensive research in dementia and elder care to help others.
Why You Need Help
When my in-laws moved to our town, we thought it was to be closer to their grandchildren. Before long, we learned the real reason was that they both had Alzheimer's and were starting to be unable to handle their own emotions, each other, and many daily tasks.
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."
What Only You Can Do
As the loved one of the person experiencing dementia, you are the only one who can:
- Recognize the signs and symptoms as a disease, and not a part of who they are.
- Make sure they have the correct diagnosis and testing needed.
- Help them remember their past life.
- Give them the love that comes from your personal relationship.
- Help them understand what they are thinking and feeling.
- Be their advocate in all situations.
- Help them to understand and accept what is happening.
- Offer unconditional love and acceptance.
- Make decisions about health care, long-term care, finances, and estate.
- Prepare them for each new stage.
How Professionals Can Help
Many people feel guilty that they can't do it all, but often calling for professional help can make sure that your loved one really gets the best possible care. Here are some things that professionals like doctors, nurses, and home health care can help with:
- Help you and your loved one understand what is happening.
- Take care of medical needs which are difficult to do in-home care.
- Give medications that help retain memory, or have less agitation about memory loss.
- Give relief from caregiving.
- Concierge for seniors can help with other life tasks like cooking, cleaning, laundry, and errands so that you can focus on caregiving.
- Home health care advocates can help you devise strategies to manage behavior issues.
- Home relief help can give you time to be away from caregiving tasks so that you can get things done or just relax.
- 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.
Tips for Reducing Stress
Caregiving can be stressful but it can also be a moment in time that 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 so that you can put your own experiences into perspective and have a better understanding of why your loved one is acting a certain way and what you can or can't do to help.
- 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 did not involve doing or talking about our caregiving responsibilities.
Resources for Learning More
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. Researching about this disease, I've learned many things I wish I'd known when we were taking care of my husband's parents.
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.
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 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 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.
A book that every caregiver needs to read and keep as a resource is The 36-Hour Day. This book is the first one I read and it does the best job of giving you the basic information you need to know as you begin this journey.
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.
Tips For Keeping 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 six-month fungal pneumonia. I also stopped eating healthy meals and exercising which made me gain weight that was hard to lose. Don't let that happen to you! Here are some things to remember:
- 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.
- 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.
- 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.
- 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.
- 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.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: Is there a source of support for caregivers after the death of a patient?
Answer: You have an excellent question. Many hospice groups, hospitals, and counselors offer one-on-one support and help or grieving groups. Some churches also offer support, encouragement, and counseling. My church has a caregiver support group which helps people to hear the stories of other people and also to find other resources and information. I certainly hope that you can find the help you need. Meeting other people who have gone through the same experience can be helpful and help you process your experiences and move on to the next stage of your life.
Virginia Kearney (author) from United States on September 21, 2012:
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.
Russ Moran - The Write Stuff from Long Island, New York on September 21, 2012:
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 from UK on September 21, 2012:
Some great all round advice here - in particular I think the one about helping them understand and accept what is happening is significant.
Kate Harris from Kent UK on September 21, 2012:
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.
Virginia Kearney (author) from United States on September 21, 2012:
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.
Bill Holland from Olympia, WA on September 20, 2012:
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.