Sunday, September 30, 2012

Lessons Learned About Dementia

If you've been one of my regular readers, you've met Susan and Peter, a typical couple facing dementia. Susan and Peter's situation is representative of a number of couples I’ve encountered in my research. Their story expresses that of millions of caregivers and care receivers in America.

The learning curve is steep when we commit to caring for people with dementia. Knowing that dementia is a terminal disease can be daunting, especially as it confronts older care partners. What will become of our loved ones if we die first? How will we manage our own final years as we rapidly exhaust our financial resources? Will our children and grandchildren drift away after years of being attentive and devoted?  How can we handle the situation if our care partner loses his power of speech, can no longer feed himself and requires a feeding tube?  How can we manage after years of pouring out our love and energy only to find that the brain disease has wiped all memory of our care from the afflicted loved one.

The Sandwich Generation face a different set of issues than elderly couples. The Parent Trap means they are caught caring for their elderly parents while still in the process of raising children and holding a full-time job. We’ve all heard about parents in their 80s, who absolutely refuse to move into an apartment/condo or smaller home and are always calling on their adult children for help in the vegetable garden, to tackle the mountain of housework, or worse, cleaning the garage or basement where a lifetime of clutter has collected. Some boomers complain they feel like parents to their children.

This or other calamitous situations with older parents will undoubtedly arise. Roll up your sleeves, because at this stage of life you may have to put your folks at the top of the list.  Better medical care is likely to keep your loved ones living longer.  Be prepared for the fact that people who live past 85 die slowly and expensively, typically spending an average of two years needing full-time custodial care: feeding, dressing and toileting—and don’t expect  Medicare to pick up the bill.

Jane Gross, a New York Times reporter spent several years looking at the relationship between aging parents and their grown sons and daughters. Gross writes in her engrossing memoir, A Bittersweet Season: Caring for Our Aging Parents—And Ourselves, how she found herself totally unprepared for her own independent mother’s rapid descent into utter reliance on her two adult children. Gross offers a number of significant tips.

Face the fact that your time with your parent is limited and make the most of it.  This involves maximizing positive shared experiences and healing unresolved wounds. Keep in mind that older people are more than five times as worried about being a burden on their children as they are about dying. Making your parents as comfortable and content as possible contributes to their ease, and allows you to feel good about their last years after they’ve gone.

Under ideal circumstances, caregivers can pull the necessary resources together to care for their dementia person at home until the end of life. But conditions are rarely ideal.  The primary caregivers may have too many responsibilities—young children at home, a demanding job, other relatives that need care. Or the caregiver is too old or too sick to carry the burden to the end of the journey.

Sometimes, the potential caregiver—the person that appears most appropriate for the task—lacks the willingness or capacity to carry the load. These and other circumstances require that long-term care take place outside the home in assisted living, group home or skilled nursing facility. 

Moving an ailing parent or spouse to a good skilled nursing home can be an act of kindness, not neglect, says Gross. A good nursing home offers not only physical support to the parent, but also emotional and practical support for the child. Try a non-profit facility.

Consult an elder lawyer, geriatric physician or Area Agency on Aging staff member, who can best determine a suitable placement that fits the family’s pocketbook and the health and safety needs of your loved with dementia.
Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life. Buy now on Kindle or Paperback.

Sunday, September 23, 2012

Pearls of Wisdom for Caregivers

While Peter* was recovering in the hospital, Susan* once again took up her journaling. She realized that feeling despondent over the turn of events was neither productive nor helpful. What to do? She let her pen do the talking, and came up with her own “pearls of wisdom”—positive and healing ways of being in the care partnership. Susan's suggestions:

Keep an open heart. Wisdom of the heart brings intuition and love into all phases of my caregiving relationship.  Because I am connected to the circle of life, I am assured that I will both give and receive as I move through my journey.  I am at peace.

Connect with the generations. I cultivate relationships with my daughters, sister and grandchildren. I make regular telephone contact with Peter’s family members to keep them abreast of Peter’s condition.  I realize that kinship goes beyond our immediate family to extend to all who care to participate.  Our family stories, traditions and activities fill our days and provide a wealth of meaning for us. Even friends and neighbors are brought into the fold—some to help Peter, others to help sustain me during difficult times. I remain hopeful.

Expand my coping abilities.  When a family or partnership crisis happens, I used to allow things to fall apart and give up. But I have learned more effective and life-renewing strategies. I have learned to accept what cannot be changed and let go of what should be or what can never be. I know that I must continue to develop new routines that fit the changing conditions of Peter’s disease. I continue to love, appreciate and accept Peter regardless of what physical and mental ailments he has.

I am also learning to be a more effective manager in setting up our daily routine. I am hiring outside help for daytime. I am taking more breaks over the course of the day. I am closing down the house early in the evening so I can spend time with uninterrupted reading. And I am letting so much go—windows, woodwork, clean floors, even supper dishes if I’m tired. I have serenity.

Be willing to experience role reversal. Once Peter was diagnosed I vowed never to take over his role as head of household.  I even organized the day so he would feel in charge. After a while this approach made no sense. Peter simply couldn’t handle the bills, schedule medical and other appointments, garden, and more recently, the errands. Sanity and well-being won the day. Peter seems relieved he is no longer thrust into activities that confuse him or which make him feel like a failure.  I am at ease.

Reinvigorate family relationships.  I never realized how Peter’s medical crisis could bring family members together to achieve a common goal: giving comfort and aid to Peter and myself.  I know everyone can’t be on the same page all the time. Sometimes, my daughters weary of hearing about their dad’s newest setback. Johnny can’t be expected to fit into the family healing circle like his sisters. But what a joy when he does call and inquires about his dad or shows his love with an occasional greeting card. My sister has been my greatest comfort, always open for listening to my sad stories, which she’s heard far too many times. I am deeply grateful.

Strengthen bonds with the community.  Now that I’ve learned to be an advocate for Peter, I can reach out in new ways for friends and allies. My Alzheimer’s support group sustains me through the difficult days.  I’m well over the early point in caregiving, where I was exhausted and joyless. Now I repeat the word HALT frequently throughout the day, reminding me to avoid hunger, anger, loneliness and turmoil. I manage my eating habits better. I also know I can pick up the phone or connect with email to a wide variety of old and new friends.

I especially find advocating a satisfying experience.  I can let Peter speak when he has the ability, and speak up when he cannot. This gives me a sense of purpose and accomplishment, and shows Peter how deeply I care.  Once I explained to Dr. Jones that he should speak directly to the patient—instead of to me—Peter was less agitated with the medical exam. I keep notes of everything the doctor says, but Peter feels he, too, has a relationship with Dr. Jones. I am happy.

Give back to others. Being open-hearted with Peter reminds me of how I was in my early parenting days. I love being a hero who can put the needs of another before myself. I’ve even discovered from everyday experience that bringing help and solace to Peter or to one of my support group friends is a “feel-good” experience. It has its own reward: In giving, I receive.  I am comforted.

Express my spiritual values. I have admitted to my support group (at last) that the challenges of providing long-term care for Peter are enormous, and watching him deteriorate tears me apart. The road has seemed too long—it feels like a lifetime. I have had to reach inside for my very survival. I have found, though, that by being in charge of the day’s structure and closely monitoring Peter’s health, abilities, level of functioning and medications, caregiving has turned out to be a transforming experience. I continue to act on my core beliefs that the family comes first and I am providing a legacy for my children.  I also have faith in the future. I plan to outlive him so I can care for him to the end. I love the last drama of our life together. I never knew it would be quite so all consuming. All is well.

Persevere with self-care. Taking care of my physical, mental and emotional health is a top priority if I am to be a successful caregiver. No matter how much I throw myself into the daily routine I set up for Peter’s well-being, I still must maintain a sense of myself, and to be aware of my own needs. I have no intention of losing myself to the point of health problems. I’ve seen this happen so frequently among our Alzheimer group members. Of course, I must accept my own limitations, always ask for help when needed and remind myself every day that no one person can do it all. I have trust.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

Sunday, September 9, 2012

Dementia: A Typical Caregiver Tries to Forge Ahead

Susan* could easily succumb to despair if she becomes too enmeshed in Peter’s* frame of reference and his needs. Especially when he’s hospitalized, she feels a constant anguish that the illness has taken them both. Despite her awareness of maintaining a level of emotional distance, sometimes, she just loses it—she falls off the pedestal and crashes. Even though she goes for days, even weeks, being the “ideal caregiver,” once her feelings get away from her—she simply can’t control herself.

She weeps for all of her family—herself, Peter and their children.  Peter can never be a real husband or father anymore. His “patienthood” has taken over. She rages over her daughters’ expressed concerns that, perhaps, they too, could inherit the disease. She surrenders to self-pity and the morose sense that her life is over—she’s done with having her own interests, her own space, her own self. At such times, she feels ready to sink beneath the earth—give up and let both die—caregiver and care receiver.

Fortunately, these anxiety-ridden episodes have been fewer over the last year. As a result of taking care of herself, they are far less intense, and don’t frighten her as much.  Despite Peter’s progressively downward spiral, she realizes she has been through the worst of it. She’s developed skills that provide a sense of competence.

Now, instead of collapsing into hopelessness, she looks for alternative ways to reduce the stress—talking a walk through a nearby park always works wonders. About a year ago, she fixed up the spare bedroom so she could be in her own space from time to time. She’s now considering moving in and sleeping there after Peter’s last hospitalization.

She’s found she sleeps sounder and feels more comfortable having a room of her own. At this juncture, she is increasingly turning within to find the strength and courage to see her through Peter’s final years. She also plans to propose to her daughters the likelihood that once Peter becomes incontinent and unable to speak because of the last stage of the disease, she plans to place him in a nursing facility. 

She has determined that she will survive this caregiving experience.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

Sunday, September 2, 2012

Dementia: When a Hospital Visit Becomes a Medical Emergency

We return to the story of Peter and Susan,* a typical couple facing Alzheimer's.

When Peter, now aged 78, needed to be hospitalized for a hip replacement, both he and his wife, Susan, sailed into the hospital room with daughters in tow. Everything was going well until a complication landed him in the intensive care unit (ICU), where he began behaving oddly. He thought he was in a hotel room, swore that rats were living under the bed, struggled at night against invisible intruders, and complained that the “hotel” staff were trying to poison him. After a psychiatric consult, Peter was given medication to calm him and help him sleep. Mystified, the family stayed with him day and night until he was back in a regular room. Here, with more normal routines, the delirium cleared.

Susan soon learned that during illness, hospitalization or recovery from surgery or stroke, many people experience delirium, a rapidly developing and severe confusion accompanied by altered consciousness and an inability to focus. It’s the most common complication of hospitalization among older people, and almost 80 percent of those treated in ICU’s develop it. When this malady isn’t recognized, it can hinder recovery. Prolonged delirium is associated with poor long-term outcomes, both mental and physical, and may even lead to death.

Among older people, delirium can be induced by a wide range of conditions: infection, insufficient food and drink, a trauma, such as surgery or injury, uncontrolled pain, medications, or simply the unfamiliar surroundings of a hospital. Susan now understands that people who have dementia are more likely to develop delirium when hospitalized. She does not confuse these two conditions. Delirium usually arises rapidly, fluctuates in severity, involves changes in consciousness and attention. It also clears up within days or weeks. By now she is very familiar with dementia, which comes on slowly, is progressive and usually permanent. Until it is severe, consciousness and attention are still possible.

Susan has a list of her own from the Harvard Women’s Health Watch she subscribes to, and plans to share it with her Alzheimer’s support group: essential how-to’s for preventing delirium when the patient is hospitalized.

Families. An engaged and attentive family member can help prevent delirum and advocate for the patient so they receive optimal care. Because family members see their loved one through the entire journey from primary care to hospitalization to rehabilitation, they are the logical advocates for their patient.

Consult with a geriatric specialist. Not all surgeons are familiar with delirium. When an older person plans a hip replacement or any other surgery requiring anesthesia or sedation, advice from a geriatric physician can facilitate planning for medication, pain control, post-operative mobility and sleep support.

Bring a full medication list to any new health professional. Many drugs that act on the brain can cause delirium, including narcotic painkillers, sedatives, stimulants, sleeping pills, antidepressants, Parkinson’s disease medication and antipsychotics. Even antihistamines and some drugs for digestive problems, allergies and severe asthma can contribute to delirium. Additionally, all medications should be reported because they could interact with drugs given in the hospital.

Make things familiar. Take along a few family photos or comforting objects—a relaxing music CD, a rosary, a favorite blanket—to the hospital. Calm conversations about current events or family activities can be comforting.

Staying close. Family members provide the greatest comfort and reassurance, and are the first to recognize when their family member is behaving inappropriately. Plan to have a family member there night and day while the patient is in a state of delirium.

Don’t forget sensory aids. Eyeglasses, hearing aids and dentures are often put away during a hospital stay, but that could leave the patient disoriented and less able to function. Be assertive to hospital staff about their use.  If concerned about loss, leave an expensive hearing aid at home, and pick up an inexpensive hearing amplifier at an electronics store.

Promote activity. Help your loved one get up and walk two or three times a day. Exercise their brain with conversation, crosswords, card games or other pastimes, depending on their mental ability.

Be there for meals. With companionship and assistance, the patient is far more likely to eat and drink an adequate amount. Be prepared to bring in some special goodies that you know will help to cheer up the patient.

Participate in discharge planning. Patients are sometimes sent home or to a rehabilitation facility while still delirious. A patient with delirium cannot fully understand discharge instructions, so family members will need to be there to help—and learn about signs that he or she needs if the loved one must return to the hospital. Make certain that nursing staff know your loved one’s pre-hospitalization level of functioning, so they won’t assume that the current behavior is typical. Ask for a complete medication review. It might be useful to discontinue some drugs (such as sedatives) that were added during hospitalization.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.