If you were really lucky … you had a grandmother like mine. She was your best friend,” Helen Hudson writes in Kissing Tomatoes, a book about the years she spent caring for her grandmother. “The wall above my desk is filled with photographs of my Granny Jo, taken during the 13 years she lived with my husband and me. Granny moved in with us in 1982, when we were newlyweds. Along with her suitcases, she also brought Alzheimer’s.”
Hudson, a member of the American Counseling Association, didn’t have much choice when it came to learning about what it means to have a loved one with Alzheimer’s disease. But she believes Alzheimer’s is an epidemic of which all counselors should take note. This year alone, 250,000 people in the United States will be diagnosed with Alzheimer’s, Hudson says, and by 2040, an estimated 11 million Americans will have the disease. “There aren’t enough nursing homes for all of us,” says Hudson, who is working on finalizing a publishing deal for her book. “We need to care for those closest to us at home for as long as we can.”
With the increase in diagnosed cases and more caregiving responsibilities being assumed at home, Hudson says it’s imperative that counselors educate themselves about Alzheimer’s. Especially as baby boomers age, counselors are increasingly likely to see clients afflicted with the disease themselves, clients serving as caregivers for ailing loved ones or both. Of course, Alzheimer’s may also hit home for counselors in a more personal way, as it did for Hudson and her grandmother.
With Alzheimer’s, plaque builds up in the brain, destroying nerve cells and synapses and attacking the part of the brain that gives us our human qualities, Hudson explains. The disease was discovered in 1906, but heavy research didn’t begin until the 1980s. Today, there is still no cure. “Alzheimer’s is not a clear-cut disease with a linear downward progression,” Hudson says. “It is fluid, constantly changing and unpredictable, which means that for the counselor or caregiver, there are no consistent, easy fixes.”
Like Hudson, Susan W. Eig knows all too well the intimate details of Alzheimer’s and the absence of easy answers. Eig, a counselor in private practice in Washington, D.C., and a member of ACA, helped care for her father, who suffered from Alzheimer’s for 16 years. “One of the things I became keenly aware of was how few resources there were for people who were caring for a family member,” says Eig, who took it upon herself to create CaregiverSupportLink, a website (caregiversupportlink.com) and support service that she runs out of her Washington office.
Eig understands that it’s not always easy for caregivers to get out of the house to attend support groups or go to therapy, so she removes some of the obstacles. Through CaregiverSupportLink, clients can call in and take part in group or individual therapy sessions over the phone. Eig also offers another service through CaregiverSupportLink for families jointly caring for a loved one with Alzheimer’s across a long distance. She conducts phone sessions with the entire family, both to problem solve and to ensure that each family member feels as though she or he is doing something to help.
Eig believes her unique experience on both sides of the Alzheimer’s issue helps. “I am able to offer to family members a dual perspective — that of the professional as well as that of the family member.”
Counseling support for an insidious disease
Plaque starts building in the brain five to seven years before a person begins exhibiting symptoms of Alzheimer’s, says Hudson, who presented the Education Session “There’s No Place Like Home: Caring for the Alzheimer Patient at Home” at the ACA Annual Conference & Exposition in Pittsburgh in March. “In the early stage, Alzheimer’s presents as forgetfulness. The person forgets where they are going when they get in the car. They put food on the stove and forget to either turn it on or off. They forget to pay bills — or pay the same ones over and over.”
“The reason it can be tricky to catch is because people can hide it well, particularly if one’s contact with them is brief,” Hudson continues. “If the person is in close contact with family, friends or neighbors, they are more likely to be diagnosed more quickly. However, if the person lives alone, as was the case with my grandmother, it can take months and months to become apparent.”
The insidious nature of Alzheimer’s often catches people off guard. While losing the car in a parking lot or making a wrong turn might not seem significant at the time, Eig says her caregiver clients are often able to recall all those instances and connect the dots after a loved one is diagnosed. “You don’t really notice initially, but as the disease progresses, you become that much more aware,” she says. “Once the diagnosis is in place, you really do become aware of the changes and the losses that have been occurring.”
Counseling can go a long way with families or individuals who have learned a loved one has Alzheimer’s, Hudson says. “Most families feel suddenly paralyzed as to what to do,” she says. “In many cases, they actually overreact. The key is for them to keep their cool and take it step by step. A good counselor is crucial in this, both in allaying the fears of the family and then helping them navigate to the next step.”
Counselors working with caregiver clients should first educate themselves about Alzheimer’s and any available community resources and then focus on using their counseling skills to help, Eig says. Grief is one significant issue that can arise after a diagnosis of Alzheimer’s is made. “You have the shell, but the person you knew and cared for isn’t really there,” she says. “It’s a series of ongoing losses for the caregiver.” The counselor can help the client deal with the loss or, if necessary, refer to a colleague trained in working with grief.
Eig also advises counselors to be good listeners and to never make assumptions. “Your client will be your greatest guide as to what they need,” she says. Reflecting on her own journey, Eig adds that it is also helpful to encourage clients to seek out support groups or others in the community who are facing the same situation. When her father was struggling with Alzheimer’s, Eig says, community support groups weren’t prevalent. Perhaps thanks to her counseling background, Eig sought out her own. She found people in her community going through the same struggle and set up weekly meetings. “I think it was life-giving for all of us to know we were not alone,” she says.
Hudson offers six “human” techniques counselors can work on with clients who have taken on the role of caregiver.
- Patience. Help clients avoid jumping to conclusions, she says. “For as soon as they think they’ve ‘got it,’ they inevitably won’t have gotten it at all. After nights of Granny wetting her bed, I insisted she wear diapers. Then one day, while we were shopping at Macy’s, she removed the diaper, placed it outside her dressing room and announced loudly, ‘I don’t need this thing. I would like to use the ladies room, please.'”
- Humility. Counselors can help clients embrace a new perspective when it comes to potentially embarrassing episodes with their loved ones, Hudson says. “When your loved one starts kissing tomatoes in the produce department instead of putting them in the bag, a smile is an important thing to put on.”
- A sense of humor. “When your loved one stands up in the middle of the congregation during the minister’s sermon and announces, ‘He’s boring. Let’s get out of here!’ another smile will come in handy.”
- Acceptance. Help clients accept what is, not what was or what “should be.”
- Persistence. Assist clients in finding the strength to stay the course, even when they feel like giving up.
- Empathy. Counselors can encourage clients to imagine themselves in their loved ones’ shoes, Hudson says. “When your loved one sits absolutely mute and unmoving at the end, when they have no clue who you are, remember this: You knew them once, and though the disease has taken them away, it has not taken you.”
Could counseling prevent Alzheimer’s?
A March 2008 Counseling Today article, “Untapped potential,” explored whether wellness counseling might hold the key to reducing the number of future Alzheimer’s dementia cases. To access this article — or any other CT article going back to January 2006 — visit the Counseling Today section of the ACA website (counseling.org) and follow the link near the top of the page that says, “Click here to download complete issues in PDF format.” Access to the electronic archives is a benefit reserved for ACA members.
A terrifying time
For counselors who find themselves working directly with a client who has been diagnosed with Alzheimer’s, Hudson recommends contacting family and friends to begin navigating care for the client. The counselor can also open the dialogue about what may lie ahead for the caregivers and put family or friends in touch with Alzheimer’s organizations, she says. (Be aware that the ACA Code of Ethics, Standard B.1.c., Respect for Confidentiality, says, “Counselors do not share confidential information without client consent or without sound legal or ethical justification.”)
Unfortunately, Hudson says, there are no counseling-specific techniques to help a client with Alzheimer’s. “While I personally prefer a combination of Rogerian client-centered therapy mixed with reality therapy and sprinkled with a bit of Salvador Minuchin, the truth is this: Most counseling techniques are formed on the supposition that the client can think with a certain amount of both logic and self-perception. With Alzheimer’s, the book is thrown out. The counselor is completely at the mercy of his or her own wits and personal resources. Every single one of them will be needed at any given moment.”
Possibly the most important role a counselor can play with these clients, Hudson says, is to encourage them to maintain strong social networks and to stay active. “In the last 20 years, science has proved beyond a doubt that staying socially and physically active not only slows the progress of the disease but vastly improves the quality of life for those with Alzheimer’s.” She advises counselors to be proactive in researching outlets for clients and their families, creative in helping clients find things they can still do and assertive and firm with families to ensure that they follow through. “It’s a whole lot easier just taking Grandpa home and dumping him in front of the TV set,” Hudson says.
Simply being there for those clients struggling with dementia or Alzheimer’s is key, Eig says. “It’s a very terrifying time for the patient. It’s a time when a trained counselor can be there to be supportive. Certainly never to say everything’s going to be OK, but to be there to listen to the pain and the struggle. The greatest gift is to be able to listen and to be able to hold the anxiety that this patient is dealing with or struggling with.” Counselors can also assist clients in writing things down and recording memories for their children or grandchildren, says Eig, who has helped clients diagnosed with Alzheimer’s to write their life stories and make videos for their family members and friends.
“By helping them to record memories that they can pass down to their families, it allows the patient to feel that he or she is making a contribution to his family and loved ones. He’s leaving a life history for his family,” Eig says. “It’s a real gift to the family member to receive the stories and to hear about the challenges from the patient’s perspective.” Oftentimes, clients want to shield loved ones from the pain or fear that they’re experiencing, Eig says, but they may be willing to share these feelings with the counselor. “The professional becomes the person who can hold the story and help them do something constructive with it. When they’re losing so much ground, the notion that they can be contributing something is hugely important.”
Counselors who haven’t previously been exposed to Alzheimer’s might be surprised at how tricky the disease can be, Hudson says. “One day, the client may be totally ‘with it’ and seemingly in control. The next, they may think that Teddy Roosevelt is president.” It’s also worth noting that people with the same diagnosis of Alzheimer’s can act very differently, Hudson adds. “Some will become childlike and lovable. Others will be bitter and raging. Still others may vacillate between the extremes.”
Mystery still surrounds the underlying causes of and potential cures for Alzheimer’s. But, says Hudson, one thing is certain — counselors have seen only the tip of the iceberg when it comes to Alzheimer’s among their client base. “(Counselors) are going to see this kind of client with increasing frequency,” she says. “I predict that within the next 10 years, there will be so many afflicted with Alzheimer’s that there will be counselors who are solely devoted to those with the disease.”
Sixteen suggestions for Alzheimer’s caregivers
The following is an excerpt from Kissing Tomatoes, a book about the years that ACA member Helen Hudson spent caring for her grandmother.
- Try to keep your loved ones in their own surroundings as long as possible. Change confuses them.
- When they can no longer care for themselves alone safely, move them in with you. Try and recreate the bedroom they knew. The more familiar you can keep their environment, the less confused they will be.
- Keep their lives simple but organized. Even their clothing should be easy to put on and take off.
- Give them chores to do that they can handle at each stage. In the beginning, Granny’s chores were to fold the laundry and retrieve the mail from the mailbox. At the end, she had only to get out of bed and dress — with our help of course.
- Watch their diet closely, being sure they get small amounts of protein throughout the day. Many elderly people, especially those who eat alone, gravitate toward soft, sweet foods that are easy to consume but not always healthy. Too much sugar can exacerbate already confused thoughts.
- Encourage them to participate in some form of exercise daily, even if it is simply walking to the mailbox. It will set the tone both for their physical stamina and for their mental outlook.
- Remember that people with Alzheimer’s grow more childlike and helpless as time passes. Treat them as the person they are now, not the one you remember.
- Just as you would not park a child in front of the TV set all day, do not let your elderly loved one do so either. They will soon become part of the furniture and have little to offer.
- Take them everywhere you go as often as you can for as long as you can. Even if they have no clue as to where they are going, it keeps them connected to both you and the world. It is also good for others to see our elderly included as opposed to excluded.
- Sing with them often. There is nothing wrong with a chorus of “Jingle Bells” in July. Surprisingly, many Alzheimer patients who can’t tell you their own names can still sing entire verses from songs they learned as children.
- Engage them in conversation as often as possible. Encourage them to talk and express themselves even if you have to hear the same story over and over every day for years. It is their story.
- Offer them something new whenever possible: whether it is to try a new food or read a new book, take up painting or piano lessons, or perhaps, if they’re physically able, even tennis. Remember that it does not matter how well they do something as long as they are doing something. Do not let them vegetate if you can help it! Nothing kills the mind and spirit faster.
- Remember that every Alzheimer patient, like every person, is different. They can run the gamut from docile to violent. If at any time they become more than you can handle, don’t be a martyr. Get help. There is no shame in asking for help. Most people like to be of service, but you need to ask. In the beginning, I enlisted teenage babysitters, our next-door neighbors, the pool man, the mailman, our minister and complete and total strangers.
- There will come a time, though, when you will need real, professional help. Whether it is a respite care, live-in facility or hospice, there will be a time when you need it. Fortunately, with the advent of the Internet, there are countless organizations at your fingertips now. Some of these include the Alzheimer Association, AARP, Alzheimer Foundation of America, the National Family Caregivers Association, the National Respite Locator Service, the Family Caregiver Alliance, Eldercare Advocates and Aging With Dignity: Five Wishes. These are only some, and by the time (her book) is published, there will likely be many more.
- Keep them warm because one day, they will not even know that they are cold. Even if they shiver and a blanket is nearby, they will not make the connection and cover themselves.
- Love them often. Hugs and kisses are better medicine than anything you will ever buy in a bottle.