Posts Tagged ‘caregiver support’

How Can You Help A Caregiver?

Saturday, September 17th, 2011

by Ellen Woodward Potts
Co-author A Pocket Guide for the Alzheimer’s Caregiver

I have often seen cases, in my own family and others, where the caregiver is abandoned.  In fact, I have been very guilty of not doing enough for the caregivers I know.  If you have a friend or family member who is a caregiver, what are some things you can do to help?

The first and most important thing is to support the caregiver with your friendship.  Even if you live a far away, you can contact the caregiver regularly to check on her.  Listening is the most important gift you can give, whether in person, via phone or via e-mail.

If you live close by, offer to stay with the person who has dementia once a week for several hours, so the caregiver can have some time to herself.  In my home church, there is a longtime member, Rick, who has Alzheimer’s disease.  Rick still lives at home with his wife / primary caregiver.  Several of his friends take turns at specified times every week taking Rick to lunch, to the mall, wherever.  Rick enjoys “man time” while his wife enjoys some well-deserved respite.  As his Alzheimer’s disease progresses, Rick will enjoy the time more if he stays at home in a familiar environment and away from crowds.  For now, he enjoys getting out.  Whether Rick leaves his home with a friend or whether the friend stays with him in his home, Rick’s wife and caregiver gets a break.

What are some other ways to help?  Offer to stay with the person who has dementia for a long weekend while the caregiver goes away.  If you have the means, offer to pay for sitters, dementia daycare or other support services.  If you don’t have the means to offer financial help, or know that offer would not be welcome, offer to go to the store for the caregiver.  Make main dishes for the caregiver in two to four serving portions which can be frozen and eaten later.  Stay with the person who has dementia while the caregiver attends religious services.  Offer to clean the caregiver’s home.

One common excuse for not doing any of these things is, “I don’t relate well to people with dementia.  I never know what to say.”  Here are some ideas for you!  If you have an artistic talent, teach the person with dementia to paint.  Musical talent?  Sing or play the person’s favorite songs from their teens and twenties.  If you have no musical talent, you can listen to recordings of these songs and talk to the person about them.  People with dementia usually remember things from the distant past, but not the recent past.  Bring out the old photos and have the person tell  you about them, if he is still able.  Recite familiar poetry or scripture.  Read familiar passages from books.  Have the person help you with some type of charitable activity — making supply kits for soldiers, assembling donated school supplies, any simple task that helps the person with dementia be a productive member of society.  There are a million different things you can do.

If you take anything away from this, please take this:  Don’t abandon the caregivers and the people you know who have dementia.  They need your friendship now more than ever.

Caregiver Respite

Wednesday, September 7th, 2011

by Ellen Woodward Potts
Co-author, A Pocket Guide for the Alzheimer’s Caregiver

One of the largest stresses of caregiving, whether for someone with dementia or some other type of chronic illness, is the lack of time the caregiver has to herself.  There are all kinds of reasons for this.

First and foremost, there is the sheer enormity of the task.  The more needy your loved one is, the more of your time caregiving takes.  Often, a loved one’s condition declines as time goes on, so what started as a part-time endeavor becomes something that consumes all your time.

Second, there is the caregiver “trap” that most people fall into:  “No one can take care of him better than I can.”  I call it a “trap,” but often it’s true.  No one will dedicate as much time, love, energy, and understanding to your loved one as you will.  That being said, others can take care of your loved one for several hours or even days at a time, with reasonable skill, kindness, dignity and respect.  You need a break, so that you can continue as a caregiver.

Third, there is the fact that as caregiving consumes more of your time, you have less time maintain friendships.  Also, friends and family don’t visit as often.  This is especially true if your loved one has dementia and may say or do things that make others uncomfortable.  In this situation, there are fewer calls and invitations from family and friends, so you have less opportunities to go out socially.

These three things, among others, make for a caregiver completely consumed by the task at hand, which is not healthy for the caregiver or her loved one.  With any type of chronic illness, caregiving is a marathon, not a sprint.  If you do not take time for yourself, you will not finish the race.  Often, family and friends will ask what they can do to help, but the caregiver does not take advantage of the offer.  Instead, have a short list of ways family and friends can help you — sitting with your loved one while you go out for a few hours or spending the night at your house while you get a good night’s sleep once a week.  If the person is not suited to caregiving, ask them to do something else — go to the grocery for you, clean your house, give you money toward a sitter — anything to help you get through this enormous task of caregiving that often lasts for years.

If you are a married caregiver who is not caring for a spouse, invest time in your marriage.  Often, caregiving consumes so much of the time and energy of the caregiver that the marriage falls apart.  Don’t become part of this statistic.  Talk about your role as a caregiver with your spouse and come to a mutual understanding, so that caregiving does not destroy your marriage.

Of course, when you set boundaries to keep caregiving from over-taking every bit of your life, expect to feel guilty for taking time for yourself.  This may be in your own mind, or your loved one may deliberately attempt to make you feel guilty (or some combination of the two).  The most important skill to develop as a caregiver is the ability to forgive yourself.  In most cases, the standards you set for yourself are much higher than any reasonable person would set for you.  Pace yourself, take time for yourself, invest in your marriage and / or other relationships, so that you can stay healthy.  Ultimately, you will be a much better caregiver for it.

Norman McNamara’s “Me and My Alzheimer’s”

Wednesday, August 31st, 2011

If you really want to understand what it’s like to live with Alzheimer’s disease, I recommend you read Me and My Alzheimer’s by Norman McNamara, an Englishman in his early 50‘s who suffers from early onset Alzheimer’s disease.  The book is a series of essays taken from McNamara’s journal, but it reads more like a series of personal e-mails from a close friend who has Alzheimer’s disease.  In this book, those of us who thankfully do not have the disease get a window on the lives of those who do.  There is a wealth of wisdom for the rest of the world in this book, way too much to summarize here, but I will try to hit the high points.

“Get help early on, the earlier the better.”  McNamara is a huge advocate of Alzheimer’s medications, because he sees real improvement in his ability to think when taking them.  He also recommends learning everything you can from reputable sources about the disease process.

Those with Alzheimer’s will have good and bad days, which he describes like this, “It’s like your glasses getting steamed up bit by bit until you can’t see, but it’s happening in your mind instead of your eyes.”  He will go from knowing exactly where he is in familiar surroundings to being completely lost in familiar surroundings.  When this happens, he describes the fear as “petrifying.”  In fact, the fear and the feelings of helplessness are one of the most horrible things about the disease for him.  Sometimes, he will go into what he calls a “trance” where he does not hear or understand anything.  At other times, he describes stumbling and slurring his speech, as if he is drunk, although he has had nothing alcoholic.

Even though there is still a stigma attached to the disease, he recommends telling people.  Yes, it is hurtful when some friends and family do not call or come by anymore, but for those who do, there is more understanding.  Norm is blessed with a wonderful wife, children and grandchildren.  Much of his joy in life comes from spending time with them.

He relates that noises are strangely made much louder, so a crowded room or a television program at a normal volume level may seem deafening to him.  This adds to his confusion and level of fear.  Also in crowds, he feels as if “everything going on around me is quicker than me and I am playing catch up.”  Because of all this, simple things like shopping trips, going out to dinner, or sporting events can be very confusing and frustrating for him.

The most important thing Norman McNamara conveys in Me and My Alzheimer’s is that in his words, “I AM STILL THE SAME PERSON!!!”  He encourages all of us to treat the person with Alzheimer’s with kindness, dignity and respect, and to laugh often and long.  Smiles, hugs and encouragement are always helpful.  Look at the world through the eyes of the person with Alzheimer’s disease, seeing everything as if for the first time, and notice the beauty and the blessings.

A Change of Perspective

Saturday, August 27th, 2011

“My mother is thinking of sending me to a private school next year,” said my friend.  She was perfectly serious, but her eyes were smiling.  “Really?  Which one?”  I replied in the same serious tone.  We both broke into a grin, but another friend nearby looked at us like we were crazy.

You see, my friend is a woman in her forties and finished school years ago.  We smiled because the statement was ridiculous, but I smiled even more because I knew how far my friend had come and how much her perspective had changed since I first met her.

About 18 months ago, I received a phone call one cold, rainy Saturday morning from a woman in tears.  She told me her name and that a mutual friend had told her to contact me.  Her mother had Alzheimer’s disease, she told me.  Her mom still lived in her own home, but had sitters who came to the house every day.  The caller was distraught, grieving the ever-changing loss of the mother she loved so well.  We talked for a long time and I suggested several books she might read to help her.

In the time since, my friend’s mother has moved into an assisted living facility.  In her mother’s view of the world, it’s about 1975 and her mother is making the decisions that were important to the family at the time, private vs. public school for her daughter, for example.  That being said, her mother is “happy as a lark.”  Perhaps a bigger surprise is that my friend is happy, too.

My friend has learned the secret of living as a family with Alzheimer’s disease.  When the disease strikes, the first reaction is denial.  The second is an overwhelming need to fight the disease.  The problem with this second reaction is that as I fight the disease, I often end up fighting my loved one who has the disease.  I think if I work hard enough, fight long enough, I can bring back the person I love.  I argue with her bizarre statements, correct her at every turn.  I end up making myself and my loved one miserable.

So what’s the secret?  Stop fighting the person.  Love her as she is in her ever-changing now.  Whatever bizarre statement she makes, follow her line of conversation.  When my friend’s mother said, “I’m thinking of sending you to a private school next year,” my friend’s reaction, quite wisely, was, “What school do you think I should go to?  Do you think I’ll have any friends there?”  She joined her mother in her mother’s world and both were at peace, even in the midst of Alzheimer’s.

How Do You Connect?

Saturday, August 6th, 2011

As dementia progresses, it becomes more and more difficult to connect with our loved ones. I often get questions about this from caregivers, friends and family alike. As time goes on, this inability to connect causes family and friends to visit less frequently, leaving the person with dementia and the caregiver socially isolated at a time when they need the most support.

How can you connect with a person with dementia? Often, the creative arts are the key. Don’t stop reading! You don’t have to be an artist, musician or have any type talent at all to employ these therapies! They’re very simple and easy to use.

Music: People with dementia usually remember things from the distant past, so choose your songs accordingly. What music did the person listen to in their late teens and twenties? If you don’t know, google “top forty songs” and put in the year when the person would have been 18 or 20 years old. You will get a list of what was popular at the time. Play and sing along with these songs, and you may be amazed at what happens. If nothing happens, keep trying! This process takes time. Additionally, if the person is religious or was in their childhood, try singing and playing the hymns of their youth. At a point when my father-in-law with Alzheimer’s disease had not spoken in several months and was in an in-patient hospice unit, we began singing familiar hymns. Amazingly, he could sing along! This is a relatively common experience. There is an excellent video from available on Youtube, Gladys Wilson and Naomi Feil , that gives an example of this. Music can help bridge the communication gap with people in any stage of dementia.

Art: Lester Potts, a rural Alabama sawmiller, was the quintessential child of the Great Depression: he was all about work. He would have considered painting pictures (for himself) wasted time. As Alzheimer’s disease stole more and more of his cognitive ability, he began attending a dementia daycare center where a retired artist volunteered his time. The results were astounding. At a point when he could no longer hammer a nail or change a light bulb, he became a watercolor artist, although he had never painted before. Even in late stage Alzheimer’s disease when he had lost the ability to speak, he could paint visual images of his childhood. (To see a short documentary film, go to Painting in Twilight, An Artist\’s Escape from Alzheimer\’s Disease). To do this at home, start with some very simple artist’s supplies, not children’s crayons and coloring books. You can buy the “Paint by Number” kits or just let the person paint whatever she wants.

Dance: I heard a story a few days ago about a woman who had been a dancer in her youth, but now had dementia. She lived in a facility and used to twirl down the halls. Most of us danced in our youth, either at school dances or as part of a hobby. If your loved one is still able to walk, play music from their heyday and dance! If the person is not able to walk, the “dancing” does not have to involve their legs. Let them move their arms to the music or take their hands in yours and pretend to dance.

Bibliotherapy: This is a fancy word for an easy concept — reading familiar things. Think of the poetry or the stories the person might have memorized or read in their youth. If the person was religious, think about familiar scriptures. Make certain to read the passages from the version the person would have read in their youth, not a more modern version.

Expressive arts therapies have been clinically proven to improve mood and behavior apart from medication, and they have no known negative side effects. Even in the mainstream medical community, the value of these therapies is being touted. (The upcoming medical textbook, Geriatric Neurology, to be published later this year by Prentice Hall has an entire chapter on the benefits of expressive arts therapies.) More importantly, the expressive arts offer caregivers, family and friends alike the ability to connect with people who often are considered to be beyond our ability to reach them. Remember, the goal is not the quality of the product or the performance, but connecting with your loved one in ways that are not possible otherwise. If you are diligent in using these techniques, amazing things can happen.

Talking to Kids About Alzheimer’s and Dementia

Wednesday, August 3rd, 2011

I have mentioned before that I had a grandfather and grandmother with Alzheimer’s disease on opposite sides of the family. My grandfather got Alzheimer’s disease when I was about 4 years old, but no one knew what to call it at the time. Was it reversible? No one could tell us. When I was in about the 4th grade, my parents and my grandmother finally decided to take him to Atlanta (a 6 hour drive) to a specialist. Diagnosis: Alzheimer’s disease, irreversible, no treatment available. I don’t remember exactly what my parents told me, but they were honest. They involved me in conversations and didn’t try to shield me from what was happening, at least in so much as I could understand at my age.

Our own daughters were 4 and newborn when my father-in-law began showing signs of Alzheimer’s disease, although it was another 2 years or so before we got the diagnosis. When our older daughter was about 6, she began to ask questions about things, which I “tip-toed” around in answering. Finally, she said one night as I was putting her to bed, “What’s the matter with Papa?”

What do you tell a child? Obviously, you have to consider the age of the child, but as much as is age appropriate, be honest. With a 4 year old, you might say, “Papa has trouble remembering things, because he has something wrong with his brain. You can’t catch it like you can a cold, so you don’t need to be scared of him. Just remember that he will always be Papa and that we will always love him.” As children grow older, add detail to that conversation. Children will ask questions, sometimes questions for which we adults don’t have the answers. Whatever you answer, and even if you can’t answer, be honest about what is happening. That will help prepare the children for the future.

Children often have an easier time dealing with people with dementia than adults. Involve your children in the care of your loved one with dementia. Let them do art or music together. We found art and music to be the bond that was never broken, no matter what Alzheimer’s disease did to my father-in-law’s brain, he could still sing the hymns of his childhood. Those times are a treasure to us now. Additionally, our younger daughter knows her grandfather through his art. You don’t have to be an art therapist to do arts and crafts projects with your loved one with dementia.

When our younger daughter was about 3, she spent the night with my in-laws. After I picked her up the next morning, just the two of us were in the car on the way home. She said, “Mama, sometimes I get scared that Papa is old and sick and that he is going to die soon.” As a parent — and one who had two grandparents stolen by Alzheimer’s disease — I was at a loss as to what I should tell her. Then, it came to me, “Papa loves God and God loves Papa, so no matter if Papa lives a long time or if he dies soon, he belongs to God and God will take care of him.” She was completely satisfied. Simple truths are usually best.

Tips for Quality of Life for People with Dementia

Wednesday, July 20th, 2011


Dementia quality of life can be improved in those individuals afflicted with the debilitating disease. Despite this fact, many still feel that dementia translates into a miserable existence for those with dementia as well as their caregivers and loved ones.

General Considerations:
A rich mix of structured scheduled activities can increase the quality of life for an individual with dementia. Planned schedules and activities let this person know exactly what to expect on a daily basis, which can decrease anxiety and unwanted outbursts. The activities should lend themselves to socialization and foster a sense of community. Some of the activities should also incorporate tasks to imbue a sense of usefulness in the individual with dementia.

Key Dementia Quality of Life Factors:
In 2010, the Alzheimer’s Society published a study highlighting ten key dementia quality of life indicators.

  1. Relationships or someone to talk to – This indicator underscores the importance of continued socialization with family, friends and acquaintances, which can contribute to a greater sense of well being and purpose.
  2. Environment – Providing a safe and secure environment, not only at home but on outings, is of utmost importance. An individual having a sense of familiarity with their environment is also helpful.
  3. Physical health – Activities such as walking, hiking, golfing, tennis, singing and yoga when possible should be encouraged. All these activities contribute to physical and mental fitness.
  4. Sense of humor – Laughing and joking can help with depressive symptoms, which can accompany dementia.
  5. Independence – A sense of independence can be instilled by encouraging an individual with dementia to make choices and care for oneself.
  6. Ability to communicate – Communicate in plain sentences and allow individuals with dementia time to answer simple questions or carry out easy tasks. Indicating that you are listening to and understanding a person with dementia is also helpful.
  7. Sense of personal identity – Engaging in activities related to a former professional life or hobbies can achieve the desired effect. Also engaging in multi-generational family outings or events can be helpful.
  8. Ability or opportunity to engage in activities – Reading, puzzles, card games and other activities encourage an individual with dementia to refocus on things they find joyful and interesting. Simple hobbies such as painting or other crafts can have benefits.
  9. Ability to practice faith or religion – Church, religion and prayer can provide solace and meaning to the lives of those suffering with dementia.
  10. Experience of stigma – This factor refers to negative or ignorant reactions from individuals who have no understanding of the disease. The individual with dementia wants to be understood, but often cannot communicate. Reassure the individual that they are accepted by you.

Keeping the above factors in mind can have a positive impact on dementia quality of life for those individuals living with this life-changing condition.