Wednesday, December 5, 2012

A Happier Holiday for Dementia Caregivers

Finally, the Holiday season is here. You’ve completed all the preparations, the company has arrived, turkey’s in the oven and now you’re ready to pick up Mom from the Happy Trails Assisted Living Home. Mom’s been living there for about six months—well, at least since her Alzheimer’s disease became too progressive to keep her in her own home. Won’t she be surprised when her three out-of-town children, their spouses and all four of the grandchildren burst onto the scene.

As you and your mom walk in the door, you’re assaulted by rap music from the living room, the smell of something burning, every light on in the house—including an overly bright Christmas tree—and suddenly the four darling grandkids come bounding in to welcome Grandma with shrieks of laughter. Grandma’s knees buckle and she slowly crumbles to the floor. What went wrong?

You need a holiday survival guide to get you through this, or any other holiday, when your loved one has dementia or Alzheimer’s disease. Holidays and special occasions can bring mixed emotions for family members caring for aging parents, an ill spouse, relative or family friend. Many family caregivers feel so weary and overwhelmed with daily duties that the thought of “enjoying the holidays” creates only sadness, depression and resentment. Here are a few suggestions to ease the stress of the holidays, and turn a potential nightmare into a real celebration.
  • Turn down the volume on voices. Avoid TV background sound with no one watching. Instruct all your guests, particularly the children, to give Grandma their soft voices. Help them understand that she can’t hear anybody if everyone is talking at once.
  • Refrain from having visitors come to the person all at once. Trying to recognize too many faces at once, and the sounds of multiple voices, can be extremely confusing. Avoid over-stimulation and over-tiring by eating earlier in the day.  Schedule travel plans to avoid long travel for your loved one or back-to-back arrivals and departures for visitors. 
  • Keep those lighted decorations within bounds. Blinking lights and large holiday displays may leave your loved one feeling less than serene.
  • Involve the person in familiar activities, such as sharing blessings or toasts, or even helping with their favorite activities, whether baking cookies, raking leaves, polishing the silver or playing a simple game.
  • Include easily recognizable music that’s soothing to the person with dementia. Because most people tend to retain vivid musical memories from the past, your best bet is offering traditional holiday music, uplifting choral groups or even big band sounds from the 20s, 30s and 40s, the era when they were young. Assist your loved one to locate the right chair so the music will be audible, but not overwhelming.
  • Holiday stress can also be reduced by passing on host responsibilities to others. In some cases, having the celebratory gathering at the assisted living or skilled nursing facility can be very helpful for a person in the later stages of dementia. Sometimes, the facility provides the meal; otherwise, bring your own family favorites. This arrangement avoids both travel and dislocation for the person and keeps the celebration in a familiar environment.
  • Gifts should be appropriate for the loved one’s dementia level. recommends that for Early Stage Dementia, when individuals may be aware of their problems, choose gifts that enhance independence (tickets to a musical or sporting event), a fruit basket, or family photo albums. Middle Stage Dementia, where more assistance is required, you can try gifts that focus on their mental level of organization. Picture books of historical places, nature or celebrities or taped religious services and music from their former church are just two examples of gifts that work for a person with a short attention span. Late Stage Dementia, when the capacity for comprehension is severely limited, requires uncomplicated and comforting gifts, such as memory boxes made up of old photos and momentos, stuffed animals or dolls, hand and body lotion, lap robes or warm footwear to help circulation.
  • Develop your own healthy self-care plan long before the holidays begin. You can get a holiday boost by following some of these tips: Allowing for “good enough”—email those Christmas cards or have your holiday meal catered, if your budget allows.  Be free from the “shoulds.” I should be happy. I should invite my friends over. I should carry on my usual holiday plans.  Extend compassion to yourself. Take time for regular breaks, meditation and leisure activities. Add special treats to your own holiday gift list—a manicure, a movie, a massage. Plan ahead and ask for help. Rely on professional home care providers to step in and provide a variety of services from respite care and transportation to light housekeeping and meal preparation.
Family caregivers who self-sacrifice and extend love to another need not run themselves ragged from the strain of care at holiday time. Setting priorities and following a few sensible tips will free you considerably from the anxiety and stress associated with any holiday.

(An excerpt from "The ABCs of Caregiving, Part 2: Essential Information for You and Your Family," House of Harmony Press, 2014.)

Wednesday, October 17, 2012

Caregiving: It Take a Village

When Mary received the diagnosis that her mother’s recent fall was due to a stroke, she knew she needed to step up to the plate. Knowing full well that her mother wanted to stay in her own home, both for long-term rehabilitation and into the future, Mary vowed that she would make it happen—as long as it was feasible.

Mary understands that her mother’s retirement funds are too limited to cover long-term care in an assisted living or skilled nursing facility. But since talking with the social worker, Mary understands that her mother could qualify for Medicaid if she “spends down” to meet the income requirements. Mary has figured out that her mother will require family assistance for at least two years before she can qualify for this government funding.

Unfortunately, Mary ran into the most common of stereotypes. Everyone in the family and medical system assumed that Mary, who is divorced, would take on the whole enchilada. This could necessitate 55-year-old Mary giving up her job and moving in with Mom, an unhappy prospect, because she would be sacrificing both salary and pension savings, as well as a job she loves.

Why is it that people continue to operate under the illusion that one caregiver can do it all? “Mary can handle it. She’ll just roll up her sleeves and get ‘er done.” This expectation often applies to a wife, daughter, daughter-in-law or even granddaughter, who are all expected to have some hidden gift for taking care of a now dependent and ill loved one. When the designated caregiver collapses under the weight of an impossible job, a “guilt trip” may be imposed and snap judgments made. She becomes “less than,” a failure at what she should naturally be doing.

We need an updated model for family caregiving. Let’s try the village concept—the “collaborative team builder” approach used in professional organizations. How would it look to you? How would it serve you to spread around the responsibility and the satisfaction of caregiving to a number of family members and even close friends?

Decide on a Family CEO. You begin with the decision maker, the family CEO, as it were. But this CEO is different. Rather than a top-down model, the collaborative approach relies on cooperation and negotiation. The CEO is mediator, conciliator, information center and coach.

Let the Coach Lead. The hands-on caregiver is actually in the best position to serve as coach—coordinating tasks and connecting the dots. Perhaps the person needs to grow into the role. But over time, let that person initiate the major decisions with the help of any family member who is willing and able: legal, medical, financial and institutional placement, among others. To keep the system going, the coach needs to add be able to motivate and encourage family members to continue relating to their loved one. Their love and attention calls for going beyond the medical crisis and being prepared for what could be a long road ahead.

Stay in Touch. Every decision must be made collaboratively. No surprises. The family CEO keeps the family informed and gets their input using the phone, Facebook, Twitter, e-mail or snail mail. No one person can make an irrevocable choice without consulting the whole team.

Assess Talents and Resources. Sort out other family members and figure out what talents or resources each can bring to the table. Be cautious about assignments. Simply because your brother is an accountant doesn’t necessarily mean he should take over dad’s financial matters.

Face the Facts. Many caregivers are confronted with the situation of the uncooperative relative. Bob refuses to visit his mother, to provide respite time or even to talk to her on the phone. He simply doesn’t want to deal with it. As unbelievable as this seems, it’s fairly common. Why not request this family member to contribute financially?

Two situations can complicate this picture: The distance factor and failure of family members to all sign on. Distance caregiving may require more time, costs and energy. It can be done, but not easily. Look for local social service professionals to help with the initial set-up, and then find a trustworthy person to keep you informed. Your regular visits keep everyone on their toes. Best of all, they provide your loved one with a gift —your presence.

When family members don’t step forward, you may need to turn to neighbors and others close to your family. Don’t limit your circle of care. You’d be amazed at how generous with time and devotion friends can be.

And, remember… To be an effective coach, you’ll need to make time to take care of yourself. You are the most critical player in this dynamic. Your good health, strength and courage will keep it all going.

Monday, October 8, 2012

Care Facilities: When One Size Doesn't Fit All

Going Back to the Drawing Board

You’ve finally convinced your mom to move into a care facility near your home, only to discover that the facility isn’t working out.  After all that work of moving her from Stamford, Connecticut to Seattle—days of packing, organizing and letting go of family treasures—you and Mom have reluctantly agreed that this isn’t the right place. You’re both exhausted, and don’t know what to do next.

Thousands of Americans find themselves in similar situations. You’ve placed your loved one in the “wrong” facility—great on the outside, but absolutely not a fit on the inside. Despite positive references from medical providers and even other caregivers, you can easily make the common mistake of assuming that one size fits all. 

What to do? I recommend going back to the beginning. First, locate a facility that has respite care until you can locate the best possible place. Then, sit down and review all your loved one’s needs—physical, mental, emotional and spiritual. Wound management? Wheelchair bound? Incontinent?  Dementia?  Food disorder? Easily upset? Late riser? Religiously oriented? Depression?  At the end of life? Identify as many markers as you can that will help you find just the right place for long-term care.

Now, begin your grand tour of a few facilities you’ve selected that appear to fit your loved one’s needs.  You’ll certainly want to interview a broad spectrum of staff at each facility: administrators, nurses, kitchen help, and anyone else who provides direct service to residents.  Use your senses—sight, sound smell, touch—and your intuition to detect the level, quality and quantity of care. Visit the facility at different times of the day. What kind of activities do they have?  If it looks strictly custodial—just a place to park an older person—move on. That won’t work for you. Try to tell the difference between staff efficiency and warmth; just getting the job done versus being committed to the residents.

Once you’ve made your decision, it’s wise to stick around and follow up for a few weeks to ensure that the care plan is actually being carried out. Don’t take “no” or “we’re too busy right now” for an answer. Let administrators and staff know that you’re part of the team, even if you can’t be there every day. Distance caregiving poses distinctive problems, but once you’ve done your homework and worked out any glitches, you can sit back and relax.

When Your Care Facility Fails to Care Enough

If you have serious complaints about the institution, and direct communication with the staff simply isn't working, don’t hesitate to contact an ombudsman. If a person faces immediate danger, such as abuse or neglect, including residents abusing each other, contact the police immediately. 

The Ombudsman Program today exists in all states under the authorization of the Older Americans Act, and steps in when communication with institutional staff has failed.  Ombusdmen advocate on behalf of long-term care residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. They work to resolve problems of individual residents, and to bring about changes at the local, state and national levels that will improve residents’ care and quality of life.

Ombudsmen can do much to improve the living conditions of the elderly and ensure that they receive proper care. With the help of prompt and detailed complaints, ombudsmen can do their jobs effectively.

For more information about the Ombudsman Program, be sure to read this helpful post from Senior Care Corner.

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.

Thursday, August 30, 2012

Guest Blog: What Cancer Patients Need from their Caregiver

When it comes to cancer caregiving, there’s no such thing as one-size-fits-all care. Every patient has a different set of needs and requires varying levels of attention. However, many cancer patients will require some of the same types of assistance during the progression of their disease.

Overall, patients rely on caregivers to help them remain as independent as possible while remaining in their own home. Cancer patients may need hygienic care and/or personal assistance as well as emotional support and general companionship.

Some patients need assistance with only one or two specific activities, while others with more advanced cancers require more aid. For many cancer patients, their level of ability changes from day to day as they experience side effects or symptom flare-ups. Caregivers can adjust the amount of care that they provide to correlate with the patient’s current needs.

Common Things that Caregivers Can Do to Help a Loved One with Cancer

Some of the things that cancer patients may need help with include:
  • Taking medications 
  • Driving to doctor’s appointments 
  • Getting dressed 
  • Showering and toileting 
  • Brushing teeth and hair (or other hygienic activities) 
  • Preparing meals 
  • Doing laundry
Caregivers also may need emotional support from their caregivers. Patients benefit greatly from having a trusted loved one who can listen to their fears and reassure them about the future. 

Caregivers often worry about not fully meeting their loved one’s needs. It’s a learning experience for everyone involved, but most caregivers adjust well to the role over time. Caregivers should communicate openly and frequently with the patient to make sure all of their needs are met. Support groups and forums can also give caregivers additional ideas for handling their new role and balancing their loved one’s needs with their own. 

Specific Caregiving Needs of Mesothelioma Patients 

Mesothelioma patients may have specialized advanced health care needs that other cancer patients do not have. Their cancer’s symptoms can greatly interfere with their ability to breathe or move about the home, so they may need a higher level of day-to-day personal care. Mesothelioma patients may also need assistance operating specialized home care equipment that they use to palliate these symptoms.

Many mesothelioma patients rely on portable oxygen tanks, mechanical ventilators or similar medical equipment. Caregivers may need to help patients change their oxygen cylinders or operate their ventilator. Some patients have ports for recurring chemotherapy infusions, and a few patients have shunts in their pleural or peritoneal cavity; patients may need help keeping these devices clean and sanitary.

It is very important that patients who use home care equipment receive care from someone with a medical background. If an in-home caregiver does not have the license to provide advanced physical care, they may call a hospice worker or licensed nurse to help with these health care services. This ensures that the patient’s medical needs are fully met.   

Author bio: Faith Franz researches and writes about health-related issues for The Mesothelioma Center. One of her focuses is living with cancer.

Sunday, August 26, 2012

Dementia: Engaging The Care Partner in Meaningful Ways

Susan* joins with other caregivers in recognizing one more essential step she must incorporate into her day: engaging Peter* in meaningful ways. First, by reducing distress and, next, by filling the day. She will need to do activities with him, not do everything for or to him.  She has come over a lifetime with Peter to be sensitive to his personal preferences and values. Who he has been. What he has valued. Who he is now. What he values now. Why it matters to him. She has become skilled at letting Peter have his "say" and set some of the priorities. At the same time, she remains aware of his limitations—reasoning and judgment are often flawed because of ongoing brain loss. Still, she pursues what it takes to make a day have meaning and joy for him.

She knows she must manage the environment as she did when she had young children—safety first, then health, and after these, structured activities. She figures out that Peter is capable of doing a variety of things: sorting socks, adding herbs or placing cut carrots and tomatoes into the salad or even learning a new exercise. The importance of stress reduction for her Alzheimer’s partner has contributed to her own sense of ease.

Early on Susan enrolled Peter in Adult Day Health, a program for Alzheimer and other dementia patients sponsored by their local hospital. This has turned out to be a godsend twice a week, when Peter gets picked up and returned home, and spends about five hours in organized activities he enjoys.  Peter especially raves about the guitar and vocal guy who comes in once a month with the old 20s and 30s standards. Susan makes certain that Peter never misses this treat. She’s learned to lean back on those days and catch up with her paperwork or attend a volunteer program she’s still involved in.  Because Peter is beginning to lose his balance, she plans to sign him up for a yoga class for elders. She’s already met the teacher, and loves her, and has decided to join Peter "just for fun."

A friend passed this along to Susan from her Alzheimer’s support group. She’s now learning to live by this "never-never list" in her daily interactions with Peter:
  • Never argue, always agree.
  • Never reason, instead divert.
  • Never shame, instead distract.
  • Never lecture, instead reassure.
  • Never say “remember,” instead reminisce.
  • Never say “I told you so,” instead repeat, regroup.
  • Never say “I can’t,” instead say “let’s do this.”
  • Never command or demand, instead ask or model.
  • Never condescend, instead encourage and praise.
  • Never force, instead reinforce.

*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, August 19, 2012

Dementia: Building Skills and Strategies

We return to the story of Susan and Peter*, a typical couple confronting Alzheimer's, as we explore strategies for interacting with a person who has considerable cognitive loss.

Peter can no longer grasp overly abstract ideas, and Susan frequently has to reframe what she says, how she says it and even when she says it. She relies deeply on Teepa Snow’s basic Do’s in “just having a conversation.” This means she has learned to go with the flow, use supportive communication techniques and rely more on objects or examples to help clarify an idea. Since their married daughter, Janine, has been traveling on a river boat down the Rhine recently, Susan uses their International Atlas to show Peter the couple’s daily itinerary.

She often finds herself gesturing and pointing, such as when Peter cannot find the word for his favorite cereal. Instead of trying to say the word, she points from one box to another until the correct one is identified. Once so stoical, Peter now weeps easily when he’s both frustrated and happy. Rather than trying to uncover some hidden meaning, Susan simply acknowledges and accepts his shifting emotions by using familiar phrases—“you’re fine, darling, it will be OK”—to soothe him. She’s also found that if she can engage him in a favorite interest, such as his precious coin collection, she can both respect his values and beliefs, while avoiding the negative.

Teepa Snow’s training materials also taught Susan that later in the disease, she will be focusing more on making an emotional connection, rather than “having a conversation.”  She is prepared to use visual cues, such as props or objects in their interactions. To get his attention, she can lift up a book, which serves as a signal for “time to get ready for bed” and “story time.” She will talk a great deal less, wait longer to hear him out, take turns to speak and keep it short. She will never confront him if he isn’t getting the words, but simply nod in ascent, showing how she is enjoying the exchange.  She is likely to start interactions with familiar speech— “How are you?” “Did you sleep well last night?” “Did you know it rained last night?” “Tell me about the new friend you met at Adult Day Health.” It makes little sense in late stage dementia to insist on a reality orientation or correcting errors.

Susan understands she must be well connected emotionally before she can distract her husband, when he is on a negative roll. Visual cues work best, she’s been told, and they should always be positive. She invariably knows that when she pets the dog, Peter will move forward to stroke his beloved pet.

Susan recognizes from the onset of Peter’s diagnosis that she will need a supportive network. Caregiving is not a role for the “lone wolf” or martyr. She begins by contacting her two daughters, who fortunately live only a few hours away. Both have offered to provide respite time for Susan once a month. That makes only six weekends a year for each girl. Both daughters, Janine and Patricia, express delight at spending quality time with their dad. They also intend to step forward for a “social call,” when brother Johnny comes marching home for his annual visit. Now that they have their own children, they can appreciate the tough times their folks experienced during their younger brother’s defiant adolescence. Both sisters know Johnny’s hot spots, and can sidetrack him from verbally attacking his dad by taking him to movies, cooking his favorite dishes and everyone playing a mean game of “Train” with their dad’s domino set.

Calling on her retired sister, JoAnn— who, after sympathizing deeply with her, consents to bringing her husband and taking over the caregiving for Susan’s much-needed yearly two-week vacation. Over the years, Peter has always enjoyed his sister-in-law and finds her husband, Mack, a “regular guy and a great fisherman.” Susan plans to continue her annual travels, this time with a daughter or friend. She’s excited about re-visiting the Grand Canyon with her new digital camera.

She also lets her favorite neighbors know Peter’s diagnosis, and asks for their help in relieving her while she shops or goes to the dentist and even visits friends on occasion. They soon discover how overjoyed Susan can be when they also volunteer to pick up a few groceries on their way home from work. Ben, next door, is especially helpful, keeping watch out his window for any sign that Peter might need a pal. Since he works at home, dropping in for coffee or to share a new guitar CD gives him a well-earned break and allows Susan to complete some household tasks. She may even pick up her latest novel and read in peace and quiet for a few minutes.

As a stay-at-home mom, Susan developed what turned out to be a perfect hobby: scrapbooking. Her kitchen cupboards are bursting with old and new volumes celebrating their family life together. Peter never tires of gazing at the childhood snapshots: there’s seven-year-old Janine with a missing front tooth, five-year old Patricia’s chopped hair after she took a pair of scissors to her lovely locks. Johnny, the athlete—what a kid! Here he is at 10 in his football outfit showing off after making three touchdowns.  Susan has managed to pry loose and remove all of Johnny’s photos taken during those “bad” years, until he settled down with a diagnosis and medications. No point in “getting dad started again.”

Another lifestyle change that suits both Peter and Susan is to alter their eating habits: whole foods, low or no dairy, plenty of fish, and stacks of fruit and vegetables. Susan’s found her energy level is so much higher, and Peter’s digestion and moods have improved remarkably.

*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.

Friday, August 10, 2012

Mindfulness for Caregivers

Taking a brief break from my posts on Alzheimer's to discuss something that's been on my mind lately: Mindfulness.

When caregivers recognize it’s time to change their life, they can turn to an ancient practice that’s close at hand—mindfulness. This approach works because it raises our level of inner awareness. We become more conscious of our attitudes and outlooks, and how we avoid, deny or shirk looking at harsh realities and uncomfortable truths. Using the tools of consciousness and intention, it is possible to change how we think, how we respond and how we care.

Once reserved for Buddhist monks, mindfulness has entered the mainstream as a means to master and restore ourselves. In spiritual circles, mindfulness is a path to inner awakening, and facilitates a shift to a higher level of compassion and understanding. Ram Dass, a leading practitioner, points out that we can be of most service to others when we face our own doubts, needs and resistances. As these obstructions lessen a hold on us, our generosity will flow more spontaneously and effortlessly.

The seeds for the current popularity of the practice were largely planted by the book The Miracle of Mindfulness. Decades of research have shown that mindfulness decreases stress and reduces the symptoms of depression, anxiety and hostility. Mindfulness facilitates learning and developing such skills as:

  • Heightened attention and concentration
  • Emotional and cognitive awareness and understanding
  • Bodily awareness and coordination
  • Interpersonal awareness, social responsibility and empathy
  • Deep relaxation and stress reduction
  • Improved ability to regulate physical and emotional pain 
  • Greater sense of the big picture
In the medical community, mindfulness is seen as a path to good physical health, as well as a supplement to traditional medicine. The University of Massachusetts Medical School, with its Center for Mindfulness, is among the proponents. Practitioners teach one exercise, which involves taking 20 minutes to eat two raisins. Participants notice how the raisins look and smell. They feel the texture. And, finally, they taste and chew the fruit.  The Center’s director, Saki Santorelli, emphasizes: “People who come to our clinic don’t care about Buddhism or any ‘-ism.’ They’re suffering and want relief. Mindfulness helps them tap inner resources.”

At its most basic level, mindfulness involves an awareness of thoughts, bodily sensations and feelings as energy. Energy, by its nature, is in a constant state of motion, which changes from instant to instant. Thoughts are “things,” which seek to manifest in material form. When we are in a state of mindfulness, we become the witness—the compassionate, nonjudgmental observer—who lives in the moment. As a compassionate witness, there is no past and no future—in other words, no expectations. There is only now. We begin with a new slate each moment. Thus, once we are aware of our thoughts, attitudes, feelings and actions, we can change them.

For caregivers, this translates into a script free of regrets and resentments. Forget about what your loved one “used to do” or “used to be”—brilliant professor, recognized authority in medicine, beautiful or talented woman, leading-edge artist. Now, we contend with a new “character,” our care receiver, who is hardly a paragon of virtue in his or her forgetfulness. We can come to know that new person without judging or lamenting this changeling. Your loved one may be far more gentle and loving than during his or her pre-illness state. Or, if the change is for the worse—physical and mental deterioration—then, it may be a matter of adjusting our mind and spirit to absorb the reality of new needs and different modes of care. By attending to the immediate symptoms and behavior, we can make more informed decisions about what that altered care might entail.

From my book, The ABCs of Caregiving: Words to Inspire You, House of Harmony Press, 2013. Get your copy now.

Sunday, August 5, 2012

Changing the Caregiver Perspective

The Story of a Typical Couple Facing Alzheimer's Continues...

Susan* was not born with the ability to handle difficult situations, such as troublesome dementia behaviors. At one time, she could only concentrate on her WOE—she felt chronically worn-out, overwhelmed and enraged. She was too proud and ashamed to confide in outsiders. Her focus was on the negative. She recounted  the disappearance of old friends, whose discomfort around Peter* kept them away. She mourned the loss of his former companionship and their sexual relationship. She guiltily admitted to bouts of irrepressible anger in the face of Peter’s intransigence and aggression, which is typical of some dementias. She acknowledged her deep resentment over Peter’s three siblings, who have been less than attentive. Their primary involvement has been interfering and critical.

Once she confronted her feelings of anger and shame, she decided to seek help. As a result of attending a local Alzheimer support group, she has undergone a major shift in her thinking and behavior. She no longer feels so powerless and voiceless. Workshops on dementia care, as well as reading medical newsletters and inspirational books, have provided countless ways in which she can develop skills and strategies.

What she has learned are six very basic principles that have transformed the way she provides care. Empathy comes first for Susan because it allows her to see the world through Peter’s eyes. From this vantage point, his world often appears confusing, lost and disconnected. Compassion allows Susan to stay centered with Peter by offering kindness and sympathy, even when his life appears upside down. Connection for Susan involved a wide array of visual, verbal, physical, emotional and spiritual cues. For instance, Susan and Peter hold hands as they begin every meal with a familiar blessing of the food, and after eating, they finish with a simple statement of gratitude. Mealtimes, once tumultous, have become calmer and far more enjoyable.

Supportive Communication requires not only acknowledging what Peter says, but Susan validates his statements by repeating them or asking for clarification. She also has a detective’s intuition for exploring what he really means, what his needs are and what may lie behind the words. She doesn’t stop there. She offers new words, a shift in location and a new activity or focus. Above all, making real changes involves Self-Acceptance—of limitations, foibles, past errors of judgment, fatigue, lack of patience and other shortcomings.

Susan feels she’s a “work in progress” as she struggles to eliminate negative thinking in her relationship with Peter. She understands all too well that Peter does not have control over many of his functions and behaviors, and does not blame herself for Peter’s frequent setbacks. If what she is trying is not working, professional advice is: she STOPS, backs off, thinks it through, and then re-approaches the situation by trying something  different. For instance, if the scrapbook idea simply caused Peter to be agitated, she would put it away, and consider an alternative plan. It might look like this. “How about some delicious hot chocolate, Peter? I even have some leftover marshmallows from last week when the grandkids were over.” Who could resist such an offer—surely, not Peter?

Undoubtedly, the most radical idea proposed for successful caregiving is the notion of being a Care Partner. For Susan, this took a leap of faith. She quickly rejected the “no-relief-in-sight” formula, because it undermined both her efforts to give care and Peter’s attempts to adjust to his illness. Instead, she cast about for an alternative approach. Gratefully, she found that caregiving can be regarded as a special, perhaps unique lifestyle, one that focuses on the benefits and rewards of being in partnership, even while living with a serious disease.

Susan also knows that their Partnership is time-bound. As Peter increasingly loses mental functions, and can no longer participate in a mutual way, she must shift into being a Coach. She remembers her son’s football coach, and how his leadership style inspired and encouraged the boys to do their best. He was a hands-on guy who knew the strengths and weaknesses of his players, and always focused on what a player can do, rather than push what he can’t. 

In fact, she spent yesterday with their new computer showing Peter how to access his photos, check his email and gain access to the Web. Peter’s enthusiasm was infectious, but when Susan left on an errand, he became easily discouraged. Susan will need to be by his side for this activity to be successful. Focusing on the Positive Aspects of caregiving allows Susan to pursue her interests, while at the same time assisting her partner’s efforts to live a quality life. 

The challenges of caregiving have reshaped Susan’s idea of giving as she recognizes what her care partner is still able to do. Through sharing dishes, folding laundry, sorting out or writing bills and other tasks, she has become more open to a deeper level of awareness in her day-to-day life. She continues to marvel at how animated and happy Peter can be when they work as a team or enjoy a film at home together. He remains his own person, despite changes, and she finds joy and satisfaction in acknowledging their ongoing relationship.

(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, July 29, 2012

A Typical Couple Faces Alzheimer's

Take Susan and her husband, Peter.*

A couple in their late 70s, they were married in the 1960s, managing to stay in love, through sharing mutual interests and delighting in their children and grandchildren. Not that they have escaped sorrow and loss. Instead, they resisted the tendency to get swept away by it. Today, they confront a new battle: the dreaded diagnosis of Alzheimer’s disease. Grappling with Peter’s strange new behaviors has become a full-time occupation for Susan.

Keep in mind that bizarre or troublesome behaviors do not happen in a vacuum. Let’s consider Susan’s efforts to cope with her husband, Peter, and his recent tendency to wander late at night. She’ll need to consider crucial pieces of information. What type and level of cognitive impairment does he have? What is the history of his personality, habits, preferences and stress behaviors? Does he have other medical impairments?  Has his environment changed, and in what way? What about his work and family history? What of his leisure time and spiritual life? What typically sets him off versus offers him comfort?

Susan has an eureka moment! She realizes that a proposed visit from their mentally ill son, Johnny, has triggered old fears and resentments. At the same time, his faithful Rover is at the vet with a recurring virus. When upset, Peter used to hop in his car with the dog and drive for hours until he could settle down and resume his routine. Now that he can no longer drive, Peter takes off a different way—walking for hours and invariably losing his way. 

Because Peter is in mid-stage Alzheimer’s, Susan knows that lecturing him when he’s distressed can send him into orbit. Instead, she reaches out for an emotional connection through eye contact, hugging and assuring him that “all is well.”  When Peter expresses his anger about their “lost” dog, Susan nods sympathetically and agrees with him that the house seems empty without Rover.

Together they move into the kitchen, where Susan pulls out a worn scrapbook containing photos of Johnny’s early years, before he was afflicted with schizophrenia. Susan also promises that Rover will be back home tomorrow, and then all three can take a long walk in the woods. The next morning she goes to the hardware store and buys secure locks to ensure that Peter cannot open the doors by himself, night or day. Peace is restored. 

(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.