By Michael Plontz
Your loved one has been diagnosed with Alzheimer’s. The first thing you want to do is find out all you can about the disease, and all about what you can do to take care of your loved one. It’s a bitter pill to swallow, but, at least you’re an adult and you can understand what’s happening. What about your children? How can you help them cope?
The way in which Alzheimer’s may affect children has to do largely with their relationship with the person before. If they are close to the loved one, the mentally debilitating illness could cause fear, anger, sadness, and confusion. If the loved one is living in the home of the caregiver, it can cause these feelings to intensify.
Fear is usually the first emotion to surface. From the fear of their grandparent or other loved one arises feelings of anger, guilt, and jealousy. All of these feelings can lead to sadness and even depression. Also, feelings of despair and helplessness may result from the loss of the loving relationship between child and loved one.
The best thing you can do for your child or teenager is to be completely honest and keep the lines of communication open. If children don’t understand, they could act out by doing badly in school or withdrawing or becoming impatient with their loved one. Physical or psychosomatic ailments such as stomachaches or headaches may manifest themselves as well. They may have to be reminded several times that Alzheimer’s is a disease, and that the disease is what’s affecting grandma or grandpa.
It is helpful to have answers ready for an inquisitive child’s difficult questions. The following questions are just the tip of the iceberg, but it’s a start.
Q – Is grandma crazy?
A – No. Alzheimer’s is a disease. Older adults are prone to illnesses that may make them forget things or act differently.
Q – Is it my fault?
A – Certainly not. If grandma told you that, it is just the disease talking.
Q – Can I, or my mom or dad catch Alzheimer’s disease?
A – Alzheimer’s is not contagious, so, no, you can’t catch it like you would a cold.
Q – What will happen next?
A – Here the parent must judge how much information the child can handle. The best thing to do is reassure them that you love them mo matter what happens.
With teenagers the questions will probably be a bit more complicated. They can see things from different perspectives. The best thing to do is to inquire about how they’re feeling, and what can be done to make them feel better. Regardless of the age of the child, open communication is the key to success in weathering the Alzheimer’s storm.
Tag Archives: getting elders to stop driving
~Paula Spencer Scott
Does caregiving actually cause stress? Some surprising new research says no, the real source of the stress lies within the person, not the situation.
After looking at more than 1,200 female caregiving twins, Peter Vitaliano, professor of psychiatry and psychology at the University of Washington, concluded that how stressful caregiving is for you psychologically is more a matter of your genes and your upbringing. Caregiving itself does not cause stress, he says. This new study appears in the Annals of Behavioral Medicine.
Who’s most at risk, according to this research? People who:
- Have a history of depression. “Like putting salt in a wound,” says Vitaliano.
- Grew up with parents who showed a lot of avoidance and fear in response to big stressors (like losing a job).
- Lack resources to help them cope, like social support and finances.
The study also found that caregiving can cause anxiety, which is in turn linked to depression.
This all may sound like splitting hairs. Though this research confirms Vitaliano’s earlier work debunking a causal connection between caregiving and stress, it flies a bit in the face of many, many other studies that link them. There’s even a name for it: caregiver stress syndrome.
This study didn’t specifically look at Alzheimer’s caregiving, whose duration and unique challenges can wear down even the best-adjusted family member. I wonder, would the results look different?
Bottom line: It doesn’t strike me as terribly helpful to be told your stress is the fault of your genes or your family history. If you’re feeling it, you’re feeling it. It’s nobody’s fault — the real question is what to do about it.
File this info in the nice-to-know category. Then go hide in the bathroom for a little deep breathing, a few bites of dark chocolate, and a wish for some respite time to come your way this week.
Family caregivers usually are fulfilled by their choice in life to provide much needed care for a loved one who needs that care.
Often we begin caring for our children and then seem to naturally progress to our parents, grandparents or in-laws who may have entered a phase where some level of care from others is required.
It may be something that begins in a small way, such as bringing them food now and then or helping with things around the house. It can quickly progress to more and more tasks and supervision, all the way up to hands on care.
Sometimes, despite all our care and best efforts, it becomes necessary to transition our loved ones in a facility where they can receive more skilled care than we can provide.
Aging in place is a goal for most of us and our senior loved ones and we as caregivers try to do everything we can possibly do to help them make this dream a reality. We will help them create the right living environment with simple modifications and big renovations or even finding a more appropriate home in which to age in place.
Unfortunately, every day is not always the best day. There will be harder days than others, crises that arise along the way including injury and hospitalization. Let’s not forget the occasional (or all too frequent) disagreement about even the littlest thing that soon gets smoothed over when we remember why we are all together.
Caregiver burnout is a reality that we all face. Getting an extra hand, recognizing that we can’t do it all by ourselves day in and day out, can help. Finding respite when you can and an outlet for your feelings will help you be a caregiver longer and better.
I recently came across an interesting poll that found caregiver stress has increased from an interesting source.
Caregivers Who Are Spouses
The Associated Press – NORC Center for Public Affairs Research recently published the results of a recent poll that asked approximately 1400 family caregivers questions resulting in some surprising answers.
They found that most Americans are counting on their families to provide care for them as they age, as they have been doing themselves for other relatives or friends. Unfortunately, not many of us are planning well for our own long term care. We can readily tell you where and how we want our funeral to happen and probably have already made plans and payments for that but we can’t tell you about our goals for day to day care before that happens.
We can’t talk about what kind of a facility we might consider, where we would want to get help, what our care wishes would be, and more importantly have probably not executed any advance directives stipulating our wishes.
This poll found that eight out of ten people found caregiving to be a positive experience but one that is also extremely difficult.
The most stress is being reported by spouses who are now caregivers — not children providing care to parents or grandparents as might be thought. Spouses did promise to care for each other in sickness and in health but find this promise to be stressful to deliver.
Spouses express the struggle that they experience when their relationship changes from companion to caregiver. They deal with not only stress but anger and frustration. It can be hard when hands-on care over grooming, feeding, wound care and other duties are taken on that were once done by nurses now are their responsibility.
While some spousal caregivers report that their marriage is strengthened by their caregiving commitment, which is a welcome outcome in the face of other stressors, spouses were more likely to report that caregiving weakened their relationship with their partner and placed an added burden on their finances.
It is reported that only about 30 percent of those over 40 who may be likely to care for a loved one in the next five years feel prepared to do so. Spouses tend to be older caregivers than those caring for parents and that could make the caregiving more physically challenging as well. The average age of a spousal caregiver is 67, compared to 58 for those caring for parents.
How to Identify and Overcome Caregiver Stress
If you begin to recognize signs that you are having what could be an overwhelming amount of stress that could be harming your health or ability to care for your spouse then it is time to take action.
- Recognize signs of stress – being tired all the time, having difficulty sleeping, feeling unappreciated with no one to talk to or care about you, feeling depressed or hopeless, not ever feeling like there is a good day, feeling like your own life is not worth living, being ill yourself, crying often or you begin isolating yourself from others.
- Begin taking time for yourself – sometimes you need to call someone to give you an hour, an afternoon, a day or a weekend off. There are people you can call, such as family members, volunteers from faith based organizations, organizations, home health agencies or friends. Just being alone, taking a breather, shopping, lunch with a friend, sleeping late or seeing a movie can mean a lot to your personal and emotional well-being.
- Get a medical checkup – schedule a doctor visit for yourself. Get your preventive health checkup or immunizations to help keep you well. You can’t help others if you are not well.
- Talk to someone – go to a support group locally or online, talk with a member of the clergy, find a friend, or keep a journal so that you can express your feelings and allow yourself to move on past those feelings.
Being a caregiver whether to your spouse, mother, aunt or grandfather not to mention caring for your own children and household will always cause moments of stress. Remember the importance of what you do every day. You are right where you are supposed to be!
Being able to recognize, though, that burnout might be lurking but you can overcome it in order to be the best caregiver possible is the first step in staying well. One smile is all the thanks you need to provide the love and care your spouse or family member needs.
Raleigh Geriatric Care Management in Raleigh, NC www.rgcmgmt.com
BY BONNIE LAWRENCE
Caring for an aging parent alone is complicated. When your brothers and sisters are also involved, and when care, medical and financial decisions must be arrived at together as a team, caregiving can become even more complex. Your siblings can be enormously helpful and your best support. But in many families, they can also be a source of stress. No two families are ever alike.
In this column, we’ll talk about how to identify the family dynamics that can impact shared caregiving, ways your siblings can help, how to increase your chances of getting that help, and how to deal with emotions that arise.
A visit home. Often, around this time of year, adult children returning home for a visit realize for the first time that their parents are far more frail than they expected. Although Mom or Dad always report they are “just fine” when you make those weekly phone calls, during a visit, you realize that this is not the case. Your parents suddenly seem much older, and you see the memory lapses, or shortness of breath, wavering balance, multiple prescription containers, or other signals of waning health.
Reactions differ among your siblings. Perhaps your sister, who lives two hours away, is angry that her mother is not the source of emotional support she used to be and doesn’t want to accept what she sees; your brother, who lives across the country and only gets home once a year, is stunned by changes he didn’t expect.
You and your siblings talk in whispers about what should to be done to ensure Mom’s safety and care. There is no money for assisted living, even if your mother would agree to it. Someone needs to step up, to see what can be done, to make decisions, to find some help, or even to live with your Mom to keep her as safe and healthy as possible. And it’s determined, often by default, that one person — perhaps the one who lives the closest, or doesn’t have kids, or is the oldest — will take on the role of primary caregiver.
Why sibling tensions can surface as parents need care
People are living longer — but not necessarily in good health. Their adult children may be caring for them for years or even a decade or more. Siblings or step-siblings are coping with a major emotional passage that stirs up childhood feelings and conflicts. But it’s made more challenging when there’s no model for working together as a team to handle the practical, emotional and financial issues that go with caring for someone who is no longer able to be independent. Some families are able to work out differences; many others struggle.
Consciously or unconsciously, needs arise for love, approval, or being seen as important or competent as a sibling. The disagreements now are over care for your parent: who does or doesn’t do it; how much; who’s in charge. At the same time, your parent is very aware — and most likely not happy — that he or she has become so dependent on you.
To help your family navigate through this situation, we offer this advice:
1. Think about, and talk about, family history and dynamics, and how they might affect caregiving. When we get together with our families, many of us tend to slip into our old roles. Maybe one person was the “responsible” one, one was the “social” one, one was the “helpless” one. But do those roles define you today? And more importantly, can you take a fresh look at who your siblings are now in the context of how these roles and assumptions can affect care for your parents?
2. Consider that care for a parent is a shared responsibility. A key concern is who will be the primary care provider(s) and what support other family members can provide. Since this is a role that can progress to more than a full-time job, this is an important decision. Rather than letting assumptions become default decisions (e.g., Barbara is oldest so she will be in charge, or Max needs a place to stay, so he’ll take care of mom), really consider who is most able, willing, skilled, and emotionally prepared to fill this role. Then consider what other family members can contribute in time or money.
3. To help reach the goal of effective shared decision-making, hold a family meeting. Family meetings are a way for siblings, parents and other concerned relatives or friends to try to clarify the situation, work out conflicts and set up a care plan that, ideally, all can agree upon. If the meeting is likely to be contentious, or if you want an experienced, objective voice to guide it, involve a facilitator such as a social worker, counselor, geriatric care manager or trusted outside party who will ensure that all participants have a chance to be heard. You may need more than one meeting. And although emotions might run high, it’s possible to conduct a productive meeting by following a few guidelines:
- Set an agenda for the meeting and keep to it.
- Focus on the here and now. Try not to bring up past or unrelated issues.
- Share your feelings with siblings instead of making accusations.
- Listen and respect the opinions of all participants. Give everyone time to speak.
- Share all information. If possible, get a professional assessment of your parent’s condition from a doctor, social worker or geriatric care manager and send the report to all participants before the meeting.
- As time goes by, use email, online care-sharing tools, conference calling and/or in-person family meetings to help keep everyone abreast of care issues and information.4. Understand and respect that your brothers and sisters might have different ideas about the care your parent needs. It’s hard to accept that your parent now need your help. Unless there’s a sudden crisis like a stroke, adjusting to this new reality takes time. Some adult children have to work through their denial that anything serious is wrong. Others might feel reluctant to get involved, fearing they are “meddling” in their parent’s life.
Yet, to the primary caregiver, the person who is present day-to-day, it’s clear that his or her parent is less and less able to handle everyday needs. They see that Mom requires assistance with grocery shopping and cooking, that transportation and bill paying are problems, or advancing memory loss or fading eyesight or painful joints keep her from normal activities. Her needs are evident and most likely will become more intense.
Working through differences: communication plays a critical role.
- If you’ve held family meetings, everyone concerned should have a clear idea of the medical status of your parent. Focus on the facts.
- REALLY listen to what your siblings have to say. Be willing to compromise and to try new solutions, as long as no one’s safety is jeopardized.
- For the doubters, it may be helpful for them to spend a weekend or even a day as a sole caregiver, to get a first-hand view of the issues.
- Be straightforward about financial issues. Finances are a key component in long-term caregiving, affecting where your parent lives, whether paid outside help is available, whether placement in a facility is a suitable or desirable option, or whether home care is manageable with family support. Overseeing bill-paying and dealing with Medicare and other health care bills is a job in itself, and can be delegated as such.
- Let your siblings know that their help is needed and wanted (if, in fact, it is — see below). Be direct and specific about what tasks you need help with. Even if they live far away, siblings can help with finances, can provide virtual companionship to your parent with frequent phone calls and Skype, or can provide occasional respite or substitute care.
- Keep communication lines open.
Tips for gaining the support of your siblings
- Accept your siblings for who they are. Not everyone thinks, feels or acts the same way, especially when a situation is this emotionally charged. Try to keep your own expectations and expressions of “should” in check, and instead, strive to accept and work with your siblings’ personalities and abilities.
- Be aware of how you ask for help. If you’re angry and frustrated when you’re talking with your siblings, it will come through in your voice. Their reaction will be defensiveness or anger. Likewise, making siblings feel guilty may lead to resentment and tension that will not be productive in solving the problems at hand.
- Figure out what you really expect from your siblings. Do you think they should provide more hands-on care? Help with errands? Visits? A day or week of respite? Financial support? Help with decision-making? Analyze whether you’re able to give up control to allow a sibling to help you, or if you’re unconsciously communicating that you don’t trust the care that someone else provides.Some caregivers really don’t want help, or can’t rely on help from siblings who are undependable or unavailable. If you’re in this situation, admit it to yourself, accept that you’re on your own, and work to make the care as efficient as possible while still attending to your own health and well-being. If other relatives or friends are willing, ask for help from them or from religious communities your parent might have been involved in. Check for resources in your community. When people offer to help, say yes.
- If what you really want is recognition and appreciation from your siblings for all that you do, you can ask for that. (You also need to express your own gratitude when you do get some help.)
- Seek advice from someone outside the family. A mediator, social worker or geriatric care manager may help get past long-standing emotional roadblocks, family competition, controlling behavior, denial, or other issues interfering with successful resolutions.
Conflicts over legal, financial and inheritance issues.
With Durable Powers of Attorney or an Advance Health Care Directive, your parents can designate who will be in charge if they become incapacitated. Sometimes this creates tension among the adult children. If at all possible, this should be discussed at a family meeting and clarified for everyone concerned. An advance directive will outline the types of care that your parent desires at end of life. With this information in writing, a difficult situation is made a little more tolerable.
Some families compensate the primary caregiver for their work, particularly if he or she has cut back on employment to care for their parent. How much the compensation is and who pays it can be covered in a Personal Care Agreement, which is a written contract. This can be reviewed periodically to ensure it reflects any changes in care.
If an inheritance is in question, or if someone feels they should get a larger portion of an inheritance because of their caregiving duties or other reasons, this is another source of potential conflict. Be aware that your parent’s will is his or hers to direct as they like, and is not necessarily representative of who was the “good” son or daughter or who did more or less for their parents.
Sharing care among siblings is a reality that millions of Americans manage on a daily basis. By taking steps to foster positive communication and support one another as much as possible, the challenging role of providing care for elderly parents can be a fulfilling, rewarding experience, which ultimately can bring siblings closer together.