The next steps.
Signs to watch for, conversations to initiate, assessments to arrange.BY AMY LYNCH + ILLUSTRATIONS BY LIVIA CIVES Refer to our Caregiver 101 article for more information on our panel.
Helping aging parents, spouses and loved ones find the support and access the resources they need is an issue many women are currently addressing in the midst of already busy lives. According to the National Alliance for Caregiving in collaboration with AARP, more than 65 million people (that’s 29 percent of the U.S. population) provide care for a chronically ill, disabled or aged family member or friend during any given year.
CAREGIVERS ARE BORN
Caregivers are born one of two ways — they’re either thrust into the role due to a health-care crisis, or they ease into it slowly after noticing changes in a loved one.
“We’re all caregivers throughout our lives, whether we realize it or not,” says Dr. Michael Agostino, an ENT who practices at Riverview Hospital. “The intensity increases when we’re faced with an emergency. At other times, the need to provide a greater level of service to loved ones seems to creep up on us.”
In either case, it can be difficult to know where to start. Taking steps now to be better prepared later is key.
Tina McIntosh, founder and president of Joy’s House Adult Day Service, likens caregiving preparation to premarital counseling.
“You’re given these tools you think you’ll never need, and you put them away in your toolbox,” she says. “Then, down the road, something happens and you need to pull them out. Whether it’s establishing a support system or getting pre-caregiving counseling, you’ll be glad those tools are there when you need them.”
Our Kit panel of experts weighs in on what to watch for in your loved ones’ behavior, how to initiate conversations about their situations, and where to go for assessments and support.
kit: What might indicate a possible issue with a loved one?
Kate Kunk, RN, CIRS-A, Caregiver Options Counselor at CICOA Aging & In-Home Solutions: This can vary quite a bit depending on the loved one’s personality. Some of us have a lifelong history of tardiness or forgetting where we parked at the supermarket — in which case, these things wouldn’t be cause for concern. The key is to observe for new behaviors that could represent more serious underlying issues.
Beth Gehlhausen, Executive Director, Meals on Wheels of Hamilton County: People may begin to notice a lack of interest in eating or not wanting to go through the motions of cooking. Many times, it’s a family member who is living alone and doesn’t have the physical (and sometimes mental) ability to prepare a nutritious meal.
Maureen Lindley, Director of Marketing, Flanner Buchanan: The signs may be subtle. Adult children who live away from their parents and don’t see them very often will usually notice that something is wrong more quickly than children who see their parents frequently.
kit: How do you know when it’s time to step in and say or do something?
Carol Applegate, Nurse, Elder Law Attorney and Owner of Applegate Elder Law: When you don’t think they’re safe to function in their own homes. Maybe they’re falling more frequently. Maybe they’re trying to eat moldy food out of the fridge. When driving is no longer safe, they might start having frequent accidents.
Tina McIntosh: There is no magical equation, but if you see something going on for three to six months, it probably needs to be addressed. Or, if their actions are potentially hazardous to themselves or others, it’s time to step in immediately.
Kate Kunk: Just because someone exhibits new behavior doesn’t necessarily mean that everything is changing cognitively. Someone whose hygiene has deteriorated might simply be embarrassed to admit he or she needs inancial assistance or transportation to shop for personal-care products.
kit: Why do people sometimes choose to ignore the warning signs they see in their loved ones?
Kate Kunk: The reason I see most often is a genuine fear of upsetting loved ones or hurting their feelings. If the loved one is an elderly parent, it can be emotionally difficult to come to terms with the fact that roles have changed. Often, caregivers are unaware of resources that might be available, so although they acknowledge the problem, they don’t know what to do. Caregivers are busy people, and other responsibilities may mean putting off attending to a loved one’s needs.
Beth Gehlhausen: It’s difficult sometimes to grasp that your loved one may be starting to decline. At first, it may be easy to brush off a slight change in behavior as something temporary. Finding out that your loved one is beginning Alzheimer’s, for example, can be devastating and requires a great deal of support and resources.
Carol Applegate: And there’s an issue of privacy. Older generations are traditionally very private and may not want to share information with their children, particularly when it comes to their finances.
Dr. Agostino: For some patients, observing their own decline reminds them of the decline of their loved ones and the grief that one goes through when losing autonomy. Or, the acknowledgement of a problem means they’re one step closer to dying, which they fear. Some loved ones believe that they need to be a caregiver for others, and they couldn’t possibly need a caregiver for themselves.
Marc Adamson, Administrator, Hancock Regional Home Health: Pride sometimes plays a part, or perhaps they just see the warning signs as normal occurrences.
kit: If you do see something worrisome, what’s the best way to approach the issue?
Marc Adamson: Often, your loved one has identified the signs already and may be open to discussing. A major concern for everyone is maintaining independence. Tying the discussion into ensuring they can remain healthy, independent and active usually opens them up to discussing issues more freely.
Maureen Lindley: Let the person process what’s been discussed; don’t expect immediate change or decisions. Many times, people have to come to an acceptance that they need help.
kit: Let’s say you’ve determined there is a problem that needs to be addressed. What next?
Carol Applegate: Getting a thorough medical evaluation is a good place to start. Take a look at medications and schedule any needed assessments to determine exactly where they are and whether they’re at risk.
Beth Gehlhausen: Becoming familiar with resources in the community is vitally important. Looking at what’s best for your loved one is sometimes difficult, as it may require huge changes in a caregiver’s day-to-day life. There has to be a balance between what the loved one needs and what the caregiver is able to provide. Many caregivers are older themselves and take on more than they are physically and mentally able to handle.
Jill Rusk, Director of Business Development, RN and Case Manager at CarDon and Associates: And there needs to be a discussion with family members about what is needed and who is willing to help.
kit: What if your loved one doesn’t want to talk about the issue, or doesn’t believe there’s a problem?
Jill Rusk: You can always contact their family physician and discuss your concerns. Physicians and geriatricians are well-versed on addressing safety issues, and the news may be better received from someone other than a family member.
Tina McIntosh: Sometimes, it’s ok to use a tough-love approach. Tell them, “We’re going to have this conversation and then I’ll know what you want, or you’re eventually going to be facing a challenge and I’m going to have to make decisions you may not like.”
kit: What should be taken into account when evaluating a loved one’s living circumstances?
Marc Adamson: Step one is to ensure the environment is safe. Clinicians can perform home safety evaluations, make recommendations and work with your loved one to develop a personal management plan that may include an exercise plan, medication management or a monitoring program. They will also provide education and training to you and your loved one on health conditions.
Jill Rusk: The loved one should be clinically assessed to identify what kind of care and living environment is needed. Evaluate the safety of the home or the place where they will be residing. Remove throw rugs and trip hazards, and review nutrition plans.
Dr. Agostino: Take into account the intangible aspects. Many people enjoy going to religious services at the place of worship where they’ve been going for many years; acknowledge the loved one’s need to sustain faith. Loved ones also need to be able to enjoy hobbies with supervision.
Maureen Lindley: Don’t forget the social element. It’s easy for a person to become isolated very quickly when health starts to decline. You may find a way to meet their physical needs, but it’s just as important to meet their social needs as well.
These changes in your loved one may merit further investigation:
→ Muscle weakness, unsteady walking and frequent falls
→ Signs of depression, such as overwhelming sadness and disinterest in daily activities
→ Changes in physical appearance, poor hygiene, wearing dirty clothes
→ Neglectful housekeeping
→ Forgetfulness and memory issues, repeating same stories or asking the same questions
→ Decreased sense of hearing, sight, taste or smell
→ Changes in eating habits, not eating at all, or letting food go bad in the fridge
→ Repeated traffic accidents or tickets
→ Getting lost in familiar settings
→ Past-due bill notices, unopened mail
→ Forgetting to take medications
→ Lack of energy, increased fatigue or altered sleeping habits
Tips on how to initiate potentially difficult or uncomfortable conversations with your loved one:
“There is no perfect opener for hard conversations because your loved one has a distinct personality and distinct needs. Put your love and respect for the person at the forefront, think of how you would want your needs to be addressed, and don’t lose sight of the fact that safety will always trump popularity.”— Kate Kunk
“Expressing your concern in an honest and non-confrontational way is always the best approach. Ask them if they’ve noticed anything first; this allows them to open up about their condition. Use words that are encouraging and hopeful.”— Marc Adamson
“Use ‘I’ messages instead of ‘you’ messages, such as ‘I’m worried that if you keep driving, you might get into an accident.’ Or ‘I’m concerned that if you eat bad food from the fridge, you’ll get sick.’ Don’t accuse, blame or criticize.”
— Carol Applegate
“Don’t spring the conversation on your loved one out of the blue. If you’re talking about funeral planning, start by saying that as you get older, you’re thinking about putting your own plans in place. That’s an open invitation to the other person to talk about their feelings. Another thing you can do is write a letter to state your concerns in a caring way.”— Tina McIntosh
“Let them know you love them and you want to be prepared to care for them as they did for you. Tell them you want to know what their wishes are in the event they need assistance. Ask them about their concerns, listen and restate what they’ve said.”— Jill Rusk
“Allow them to feel
they’re in control, and allow them to maintain their dignity. Get the support of other family members.”
— Maureen Lindley
“In the spirit of humility and gratitude, I would offer the following starter for a conversation — ‘You’ve been there for me many times. Because you’ve shown me how to be concerned about others, I owe it to you to tell you that I have noticed some changes in you.’ Then, ask ‘Is there anything you want me to do to help with this problem?’ ”
— Dr. Michael Agostino
Watch for the November/December issue of kit, where our experts will talk about coping with role reversals and changes in relationships, assembling a caregiving team, and finding support.