Guest Post: A Better Way to Manage Medications

By Brian Gough
Creator/Designer
Beelines Medication List

I was surprised and unprepared when I had to become a caregiver for my elderly mother.  She fell and broke her leg when she was 78. During surgery to repair her leg, her doctors discovered serious heart issues. She came home with handwritten directions for taking 17 different medications, most on a daily basis. My father, who could help with many of her daily needs, is legally blind. Managing her medications was overwhelming for both of them. This event is not unlike other situations that thrust sandwichers like me into becoming caregivers for their aging parents, and was the catalyst for what became the Beelines Medication List.

Before

I needed a simple tool that would help me record and organize my mother’s medications. Reading the undifferentiated information on the handwritten list was stressful and time consuming. My first thought was to design a version presenting the same information in a format that was clear and unambiguous. For the last 2 years, I have used the Beelines MedList to fill my mother’s pill box and take to all her doctor’s appointments. This list has given all of us confidence and reassurance that the medications she takes daily are dosed correctly and comply with her doctor’s orders. It has been so successful for my family that I wanted to make the Beelines MedList available to anyone who needs a more user-friendly tool to manage their medications.

Why create and use a medication list? There are many reasons that have been well documented about why it is important to use a medication list. The benefits for patients include:

• Reducing their risk from medication errors;
• Becoming more engaged participants in their own healthcare;
• Improving clinical outcomes;
• Gaining knowledge regarding safe medication management and effective communication with their healthcare providers; and
• Becoming advocates for themselves and others regarding safe medication management and communication with healthcare providers. (1)

After

A medication list can save your life. As you may have already read on this blog regarding dementia and delirium, without clear medication records, there is a higher risk of adverse drug interaction in patient care. “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.” (2)

At home, my mother’s Beelines MedList has served many of the roles listed above. One other effective use, I have found, is to post her medication list on the refrigerator in case of an emergency. (Emergency medical teams will look for critical information on the refrigerator if they are responding to a call for help.)

Whether you use the free Beelines Medication List at beelinesmedlist.com or another medication list tool to organize medications for daily dosing and compliance, don’t wait to take this important step in caring for yourself or others.

(1) "How to Create an Accurate Medication List in the Outpatient Setting through a Patient-Centered Approach." Kathy Leonhardt, MD, MPH; Deborah Bonin, RHIA, CPHQ; Patti Pagle, RN, BSN; Aurora Health Care / Walworth County, WI, 2007.

(2) "Dementia: When a Hospital Visit Becomes a Medical Emergency." Nanette J. Davis, Ph.D.; http://www.nanettejdavis.com; Sunday, September 2, 2012.

Guest Post: Tips for Hiring an In-Home Caregiver

By CareSimply

As your parents and other loved ones get older, your top concern becomes providing them with the care they need in a comfortable environment. A comfortable environment for aging Americans increasingly means remaining in their own home, rather than moving to a retirement home or other institution. In a 2005 survey by AARP, 89 percent of people age 50 and older said they would prefer to remain in their home indefinitely as they age. Aging at home gives adults more independence in a comfortable, familiar environment. Family members of aging adults want to respect their wishes to remain at home, but also make sure they receive the care they need. Hiring an in-home caregiver is a great solution, but many families have a difficult time finding adequate help.

It’s normal to feel overwhelmed by the process of hiring care, especially if you’ve never been in a hiring position before. While the process may be stressful at times, it’s certainly not impossible. You are more than capable of managing it when armed with the right information. We’ve come up with CareSimply’s Guide to Hiring an In-Home Caregiver to help you navigate the process and point you to helpful resources. In this blog post, we summarize our comprehensive guide by covering the five basic steps for finding and hiring an in-home caregiver.

(1) The first step in finding a caregiver is to assess the caregiving situation. It’s important to evaluate your loved one’s needs before beginning the hiring process. Signs that your loved one may need help at home include difficulty with everyday activities, such as household chores, personal hygiene, and running errands. You should consider the following four areas when assessing your home care needs:

●        Personal Care: Personal hygiene, bathing, toileting, dressing, eating, etc.

●        Household Care: Cooking, cleaning, laundry, grocery shopping

●        Health Care: Medication management, physical therapy, operation of special medical equipment

●        Emotional Care: In addition to all other types of care your loved one needs, the caregiver you hire should provide companionship for your loved one. This includes engaging in conversations and participating in meaningful activities together.

(2) Once you’ve assessed the caregiving situation, it’s time to clearly define your needs to ensure you’ll be able to find a qualified worker for the job. When defining your needs, you’ll want to write a job description to lay out your caregiving expectations. Your job description should include the types of duties the caregiver will need to perform, any special skills or health care training required, and hours the caregiver will be expected to work. You’ll also want to start thinking about how many caregivers you should hire. For full-time care, we recommend 3-4 caregivers. If your loved one only needs care for a few hours each week, 1-2 caregivers will work great. When writing a job description, it’s also important to determine your budget for caregiving. For helpful budgeting resources, visit Medicare, HealthCare.gov, and the Paying for Senior Care guide.

(3) The next step in the process is to decide how you want to hire a caregiver. Depending on your budget and care needs, there are typically two ways to go about hiring an in-home caregiver - going through a traditional home care agency or hiring a caregiver independently. Home-care agencies handle all caregiver screening, hiring, payroll, and taxes, but they are the most expensive option for hiring care. Agencies offer limited control in the hiring process, making it more difficult to ensure that the caregiver is a good match for your loved one. On the other hand, hiring independently gives you more control over the process, but it requires more time and effort than going through an agency. Hiring independently is less expensive, since it requires you to take on the entire searching, hiring, and payroll process.

There are other services that assist you in hiring your caregiver directly. Websites like CareSimply let you browse online caregiver profiles for qualifications, reviews, and availability, giving you control over the hiring process, while eliminating the headache of payroll and tax paperwork.

(4) After deciding on a hiring method, the next step is to choose your caregiver. It’s important to speak with your caregiver before they begin the job, either in person or over the phone. Start the conversation by describing the details of the job, then, to further gauge compatibility, ask them about their background and interests. If you’re hiring through an agency, they will most likely handle the more formal interview questions, but if you are hiring independently, the full interview will be your responsibility. See CareSimply’s Interview Guide for a list of questions to ask. Once you narrow your selection down to 2 or 3 candidates, the next step is conducting reference checks. Ask each candidate to provide 2-3 work or personal references for you to contact. When calling the references, ask about their relationship to the candidate, their overall experience working with them, and if they would recommend the candidate as a caregiver.

(5) Once you’ve found the right caregiver for your loved one, you’ll want to continuously evaluate the experience to make sure everything is still going well. A good way to do this is to schedule regular meetings with the caregiver to discuss their responsibilities and any concerns or changes. 

Most importantly, sit down with your loved one to make sure they are satisfied with the person providing care. Ask them whether they feel comfortable with their caregiver, and if not, have them identify specific problems or concerns. If your assessment uncovers any problems, it may be time to revisit the hiring process. Finally, if your loved one’s care plan is going well, tell your caregiver they are doing a great job. Caregiving is not easy, and it’s important for your caregiver to feel appreciated! 

Founded in 2012, CareSimply is the easiest way to connect caregivers with people that need local, quality in-home care. It is an incredibly reliable, affordable and simple way to hire quality care services and manage household employees. CareSimply services range from companionship to Alzheimer's care. CareSimply is backed by seed investor Right Side Capital Management and start-up foundry Sandbox Industries.

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. Dementiatoday.com 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.)

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.

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.

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.

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.

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.

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.