This essay was published a while ago for Teepa Snow's Positive Approach to Dementia Care (www.teppasnow.com) Free Online Monthly Dementia Journal.
Having re-read it, I feel it is worth publishing again here as a helpful list of how to be a good caregiver for someone you love who is living with Dementia / Alzheimer's Disease.
Advice to an Alzheimer’s Caregiver Newbie
I am often asked, "What would you tell someone who just found out that their spouse or parent or sibling or friend was diagnosed with Dementia/Alzheimer's?" This is what I learned over the forty-one years my life partner Gregory and I were together in a committed relationship and over the twelve years that I walked the Dementia/ Alzheimer’s Path with him.
I will not go into the different kinds of thinking necessary for different kinds of advice to give in different kinds of relationships, but rather tailor my comments to anyone being part of the caregiving team. I will also say, that just as there is no one way in which Dementia expresses itself, there is no one way in which to offer care!
Be gentle with yourself. Forgive yourself. To be a successful caregiver partner, you must know that you will not always be successful. First, you are the one who can, must, and will change and adapt; they cannot. Sometimes you will fall short of being your best possible self! Every morning (or as often as you need to) in front of a mirror, repeat to yourself, “I am not perfect but at least I try!” Or the often-touted mantra, “Each day in each way, I am getting better and better!” If you don’t want to face the mirror, write it down in a place you can see it at the start of each day.
Try, try again. Next, you are the one who must be “above it all,” knowing it is all about the disease and the person you love; but sometimes you will let frustration, anger, fear, exhaustion, etc. get the best of you. Remind yourself that you are only human.
Know that each day will be a new one. Each day you will get a new chance to “make it right.” Try not to feel guilty or carry yesterday’s difficulties into today. Chances are your loved one will more easily be able to be forgiving and to start each day anew. Take advantage of beginning fresh each day.
Interpreting behavior can be difficult. Know that sometimes you will not know how to interpret the behavior you are witnessing let alone how to deal with it or support the person you love. Try to put yourself in their place and think about how you would feel. Ask them for clarification or at least let them know you care and wish you could help.
Respect the person living with Dementia. No matter what changes they go through, find a way to help them continue to keep their personhood even as their abilities fail. Help them to find alternative abilities to replace those slowly leaving.
Respect the decisions of the person diagnosed. As much as possible, respect their right to be who they are, to make decisions for themselves, or at least to participate in making those decisions, to live their lives in the ways they choose.
Be aware that decisions are not always able to be made by the person living with Dementia/Alzheimer’s. Sometimes and/or eventually, these decisions must be made on their behalf but always must be done ethically, with love and respect, and only in their interests (not your own) for safety and health reasons.
Validate as you seek to understand. If your spouse expresses worries about financial matters, repeat their words to validate their concerns, and then tell them what your plan is. “Oh, so you’re worried about finances? I am pretty sure we are okay, but I’ll check in with our accountant to make sure.” If your mom is upset, but is unable to use language to explain what is upsetting her, validate her frustration. “Mom, I can see that this is hard for you, and I’m sorry.” This can also be where you need to put on your detective hat and get curious about what is upsetting her. Using visual cues and “Is it this or something else” questions, you may be able to figure out what her unmet need is.
Try to maintain a team approach. In your relationship with the person living with Dementia (PLWD), make sure to include them in most decisions that affect them. If their ability to participate in the decision-making process is diminished or does not exist, offer the alternatives in bite-size pieces which continue to respect that they are or once were part of the team! If you are purchasing a new item, show them two similar items and ask which they prefer. Load the questions a little by offering, “I really like this one best, what do you think?”
Be patient with the person. Their processing and understanding of the day-to-day activities of life, both mental and physical, are changing. The cognitive abilities are slowing down and/or the connections are no longer as easily made. Abilities may come and go, may return in reduced form, and eventually no longer exist. When asking a question, give the person a chance to process what you said. Asking another question or clarifying too quickly only serves to create more confusion.
Control your anger, as best as you can. Sometimes your frustration can cause anger. Sometimes the PLWD’s behavior can cause anger. Conversations gone awry can cause anger, especially when you have been used to successful conversations for such a long time. Imagine that the person diagnosed is slowly living life backwards, losing what they have learned. Count to ten, leave the room (don’t just walk out, say “I’ll be right back.,” and breathing deeply all can help.
Remember, they are NOT children. What complicates the matter is that mentally, it appears they are becoming a child again, but the fact is, they are NOT children. They are adults, in an adult's body, with an adult's worth of experiences and knowledge that will be at a wide range of various and changing levels of availability to them.
Accept repetition. Do this in conversations just as you would gently do for a very young child as he grows with wonder at the world around him, often with his asking the same question repeatedly with a string of Why? Why? Why’s? How you deal with your loved one should be similarly loving but with respect for the adult which they are even though they may slowly be losing their abilities and possibly their ability to wonder.
Realize it is the disease. Differentiate between the person who you are continuing to love and trying to help and the disease. If they get angry with you, it is the disease. If they strike out, it is the disease. If they need you to repeat something for the hundredth time, it is the disease, not the person!
Try to see beyond the behavior. Perhaps the person no longer can express themselves using language, perhaps they are no longer aware of what is troubling them. Maybe they are in pain but do not recognize it, let alone have the ability to let you know about the discomfort. At times thirst and hunger are no longer recognized let alone how to satisfy those basic needs.
Physical things are not always what they seem. At times a dark, reflective window can be a vast empty frightening place that is home to demons, and a dark area rug in front of a door can be a deep hole in which one might fall! If the memory fails, a loved one can erroneously become a stranger and a trusted friend can become a dangerous enemy. Close the shades at sunset, remove rugs, arrange furniture so it is not in the way of the route to the bathroom or bedroom. Assure them that you care and that you are there to help!
Put yourself in the person’s place. Work hard at imagining what might be troubling them. Then see what you can do creatively to correct, distract, and/or remove them from the situation.
Create music and art activities. They can provide a person living with Dementia/Alzheimer’s with hours of productive fun as well as provide a sense of accomplishment and an opportunity for socialization with loved ones. Use headphones to listen to music from the PLWD’s era or that they used to be able to play. If artistic, but no longer able to practice their art, try to find a replacement. Reintroduce (careful if maybe insulting) coloring, crayons, pencil sketching, finger painting.
Activities must be meaningful and foster success. Try to make the activity one where they can experience success and also one which will be meaningful to them. For example: household chores, help with meal preparation, cleaning up and setting the table, folding laundry, reading, watching TV, playing a DVD or video.
Toys can help entertain. Many toys can provide sophisticated ways of spending time. Others, like dolls or Teddy Bears, if accepted, can provide something to do with the hands as well as emotional support and harken back to earlier memories. Crossword puzzles and jigsaw puzzles come with various levels of difficulty.
Television, video, and DVDs can help. So what if the PLWD sits in front of the TV for a long time? Make sure what they are watching is calm as well as entertaining. Avoid news programs. Videos dealing with nature and animals are great. Musicals (usually older ones) that have an uplifting plot are good. Keep the volume loud enough to keep their attention but not so loud as to frighten them.
Tailor the environment. As a person’s needs change, so must the environment in which they live. Be careful about rugs that may cause a fall or furniture that may not support their weight. Keep sharp and dangerous items out of sight or under lock and key. Make it easier for them to find what they might need and try to keep everything in its place.
Meals can become complicated. When eating at a restaurant, help guide the PLWD through the choices depending on their cognitive abilities which can range from “What do you feel like eating today?” to “Do you want chicken or fish?” to “Oh, this chicken dish looks good, shall we try it?” Meals at home, if causing difficulties, can be served one course at a time, be easy to pick up with fingers, be easy to chew and swallow. Sometimes the color of the table, table cloth, and/or dishes can soften dinner time difficulties.
Be flexible. As the diagnosed person's needs change, so must their activities and environmental change. Every day might need a different approach to almost every possible activity: toileting, grooming, eating, dressing, spending time, sleeping, etc.
Be aware of medical changes. Some of the changes may not be apparent so if you see a change in behavior that is not explained by anything obvious to you, and that seems to last for an inappropriate period of time, maybe it is time for a visit to the doctor for some tests. Infections, digestive problems, or physical injuries are just a few that might be happening but not visible to you.
Be selfish. Most people will be taken back by this term, but I maintain that if you do not take care of yourself, you will not have the energy or health to give to another. Find ways to relax, refresh yourself, getaway for a short period of time, make sure you visit your own doctor as needed, and enjoy yourself when and as you can. This is important. Statistics show that often caregivers die before the PLWD because they are so busy taking care of the PLWD that they do not take care of themselves.
Ask for help. This is a difficult one. First of all, it does not mean that you are weak or not doing a good job. Second, finding ways to involve other people who love you and love the person diagnosed is not easy. Everyone has a life of their own and most are oversubscribed. But there are ways that others can help to lighten your day-to-day. Also, the PLWD will benefit from having “others” around them for whatever reason.
Look to your community for help. If not family or friends, check out the possibility of getting respite help from local high school or university students, from your church, from a neighbor, from your housekeeper, from your city’s Senior Citizen Center, from your local Alzheimer’s Association. Even an hour by yourself can help you keep your sanity.
You can do this! What choice do you have, really? Hopefully, with support from family, friends, your religion if you embrace one, your therapist, your neighbors, a group of people in a support group or online chat room – you can find a support system that works for you. You will be strong and find resources to keep going. Love will help. Kindness will help. Being good to yourself, even though you are devastated, will help.
You are not alone! In the United States, over five and a half million people are living with Dementia/Alzheimer's and this number is growing. 16 million people are helping to provide unpaid care for them. This includes over 18 billion hours of care at a value of over $232 billion dollars!
Waxing philosophical: It will...get better ... but sometimes better is not on this side of life. We all will die. For some of us, it will be easy, quick, and/or unexpected. For others, dying will be anticipated, slow, and/or very painful. Doing our best to help others reach their end as comfortably as possible is the best we can do and to hope in turn that it will be offered to us! It is a blessing to be able to do this for one another.
Usually, a parent wins the race to death. While one might say “they lived a long healthy life” or “they had a blessedly wonderful life,” often that does NOT lessen the grief and feelings of loss for the children; even if the parent is “in a better place” or “no longer in pain.” Sometimes these platitudes help, other times they do not!
With a spouse, who wins the race? Either you or your partner will “win the race.” Interestingly, the person diagnosed with Dementia does not always win the race! Often the caregiver partner is the first to cross the finish line and to leave this life.
With a sibling or friend who wins the race? The contest may have either one of you be the winner.
Have conversations about death with the person dying. Do this while they are still able to express themselves, it helps them to die with dignity and helps you to serve them in a way that follows their wishes as closely as possible.
One size does not fit all end-of-life conversations. Again, there is no one way for these types of conversations to take place. They may take place easily or they may be a very difficult topic to broach, for some or everyone involved. You must determine whether to continue these conversations depending on how your loved one reacts or if they let you know they do not wish to have these discussions! You might drop the subject and try to bring it up again at a later date.
Grief always takes its toll. It is never easy when someone we love dies. Talking about death helps, in the long run, to ease the mystery of life and the mystery of death. Telling our stories to each other and listening to the stories of others, gives us a common ground that allows for grief to express itself.
There is no one right way to grieve, no time period in which it should take place, and no right or wrong way to do so. People will try, good-naturedly, to tell you how to grieve. They will share their experiences with grief. They might say something like, “It’s time to move on.” Or “You need to get back to your life!” They might suggest all kinds of ways to make your grief easier. You might experience similar approaches in books you pick up or that others give you. In some ways, one never gets through or gets over grieving, it just becomes a little easier to carry the grief. The problem as well as the joy is that with great love, there is great grief! And each person grieves in their own way!
The greatest mystery in life is death. We think about it and fear it from the first time, as a child, we begin to have intelligent thoughts. We hold on to it our entire adult life and it can color how we face living each day. Hopefully, death’s mystery also allows us to live a meaningful, fulfilled life with respect, love, and understanding for others and for ourselves during the time we have available.
You are not alone! You can do this! Believe in yourself! It will not be easy but it can be done well! A diagnosis of Dementia/Alzheimer’s does not have to be a death sentence but rather can be an invitation, not necessarily an anticipated one, to live life to its fullest!
