As family members age, adult senior children are often put in the position of caring for an elderly parent. Many times the parent moves into the adult child’s home, or into a senior group home or facility. In either case, it means extra responsibility for the “child,” who is already a senior himself or herself. Watching parents age can be one of the most difficult stages in life. As their health slowly begins to deteriorate, the realization that they are approaching the end of their life journey can become overwhelming. Learning how to cope during these trying times can help caregivers successfully navigate through this very complex life stage. It is indispensable for caregiver to have insight about caregiving process.
Caring begins with accepting the reality that life for both the elderly parent and a caregiver is inevitably going to change. In order to move forward in a positive way, the caregiver must fully understand that the health of their parents is deteriorating. Accepting that elders are often struggling with self-defeating thoughts such as loss of independence and medical problems, can help caregivers better see the need for compassionate care. It is important to continually strive to provide assistance that helps elders retain a sense of dignity during the process. Caretakers may also find their patience tested when an elderly parent speaks, moves, thinks, or eats slowly or with difficulty. If the elder is slowing down in mental and physical ways, it is still important to allow him to maintain as much dignity as possible.
Who is Responsible for Elderly Parents’ Health Care Decisions?
As roles change and adult children become caregivers for their parents, it is sometimes hard to determine what is reasonable to expect of oneself or others. It is important to emphasize that “role reversal” does not imply control over elderly parents; moreover, it merely suggests that adult children should act only as a guide. Elders should be fully involved in the decision making process unless they are severely incapacitated to do so due to medical reasons. It is important to help elders fully articulate how they wish to live their senior years. If the elderly parents’ decisions affect or involve others, it is reasonable for the others to expect to be consulted. However, caregivers children must be mindful of the following boundaries:
- In general, if a person’s elderly parent is ill and married, the ill parent and spouse are responsible for making decisions about the ill parent’s care. This is assuming that the relationship is not an abusive one, and that the well spouse is of sound mind and is not addicted to alcohol or drugs. If the ill parent has dementia, the spouse will take on more of the decision making as dementia progresses.
- If the elderly parent is ill, is not attached to a spouse or partner, and is of sound mind, he or she is responsible for his or her decisions.
When Caregiver Need to be Involved in Aging Parents Decisions
There is no doubt that many elders may wish to keep private matters to themselves; however, leaving the issue open until serious illness occurs can create problems. Adult children who care for their parents have a right to want to have a say in the decision-making. Caregivers need to have as much information as possible at their disposal in order to help carry out their parents’ final wishes. Some of the areas and affairs about which caregiver must have information include medical, financial, legal affairs, etc. Each of these are explained below.
Health and Medical Information
In case of a medical emergency, the family caregiver should know the name and contact information of each parent’s doctor, dentist, or specialists. If hospital admission is required, having a copy of health insurance policy numbers on hand will speed the admission process.
As the caregiver, keep a list of all medications and supplements taken and be aware of the arrangements for refills; know if either elderly parent has any allergies, especially to medications; be aware of any past serious medical conditions, surgeries or treatments, and if either parent has an implant (such as artificial joints or pacemaker).
Financial and Legal Affairs
If a parent becomes incapacitated, it may be necessary for the family caregiver to take over the routine tasks of paying bills and managing the parent’s financial affairs. Have the name and contact information for the parent’s accountant and financial adviser and know where the financial records are kept. (This may also be a good time to review their financial situation to ensure that affairs are being properly managed and kept up-to-date.)
Ask for a list of banks, account numbers, and safety deposit boxes and get a list of all insurance providers, this includes home, auto, life, and mortgage insurance.
As well, the caregiver should know the contact information of the parent’s lawyer; know where wills are filed. If a will has not yet been made, encourage the parent to have this done as soon as possible.
Do not neglect the social network of the elderly parent; these are the people who also care about the welfare of the parent and may be able to provide assistance in a crisis. If the elderly parent attends a church, have contact information for the church and know in advance if the parent would appreciate a call from the pastor if ill or hospitalized.
Even if the elderly parent is not ill or failing, have the name and phone number of a close neighbor who can be contacted contact in case the parent can’t be reached.
The family caregiver and all other family members should be aware of any advance directives in case of medical emergencies, such as resuscitation efforts or use of life-support machines; ask if funerals have been prearranged and who to contact.
Caregiving children should also discuss and decide various matters:
- their current medical state
- the medications they are taking
- if they have extended health insurance
- details surrounding their current doctors and specialists
- where they wish to live as they age
- if they wish to live with an adult child or in a retirement facility
- if they are financially able to support their elderly lifestyle or if adult children will have to help with the finances
- if they choose to remain in their family home and if so, are they able to financially sustain this effort
- any legal documentation
- their final wishes.
Why Aging Parents Do or Don’t Consult Adult Children
In general, if the relationship between parents and children involves mutual respect, and if adult children have been good listeners (as opposed to dictators), parents will be more apt to trust them and welcome their input because parents understand the transition and are willing to disclose sensitive information to their adult children. However, if the relationship pattern is stuck in the parent-child mode, problems can result. Parents and adult children are each responsible for this relationship pattern, and either party can change it.
This pattern takes two forms:
- The parents do what they want without consulting the adult children, but expect help and assistance from the adult children.
- The adult children assume that they know better, dismiss the parents’ concerns and try to tell the parents what they should do.
Adult children caregivers can become burned out because they have no decision-making authority, yet they are constantly being called upon to respond to crises. This may be disruptive to their own health and well-being. They may see no way out. However, there are several options for adult children in this situation.
How to Gain Decision-Making Authority with Elderly Parents
The first option is to come out of the child role and learn how to get on more equal footing with parents. Parents cannot keep adult children in a role that they refuse to stay in. Some ways to accomplish this are:
- Learn and practice communicating more effectively with elderly parents.
- Read books about adult children caring for elderly parents.
- Join caregiver support groups.
- Becoming a confidant and helper to the parents is the first choice. This time of life can be a time to reconnect, heal old wounds, and develop a new closeness.
Coping With a Parent Who Has a Serious Illness
Dealing with a parent who has a serious illness is scary and confusing. Research your parent’s illness. Go to the library and check out books on the topic. Look online to see if there is a website or foundation dedicated to the disease. If so, request an information packet. If possible, attend doctor’s appointments with your parent. As long as your parent gives permission, this will enable you to discuss medications and treatment options with their doctor. Make a list of questions before you go, and write down the answers for future reference. Make sure to include your parent in these conversations, whatever their state of health is. No one likes to feel as though they are being discussed like they are not even there.
Whether the illness is terminal or not, any serious illness can be scary. Make sure you spend time with your parent as often as possible. Do things you enjoy together, such as going for a walk or watching a movie. Consider signing up for an adult education class or joining a club, if the situation permits.
How to Make a Visit to the Doctor Easy for an Elderly Person
Caregiver frequently needs to take the parents to the doctor. It is important that visit to the doctor should be planned in such a way that the visit should not create encumbrance for old parents. Don’t schedule more than one appointment per day if the elderly person tires easily or gets anxious when he or she is away from home. Trying to get a lot of errands and appointments done all in one day may be fine for an energetic caregiver, but an older loved one may not be able to keep up. Schedule the doctor appointment so that the elderly person is the first patient of the day, or first after lunch. This means less time in the waiting room.
What other tips help make a visit to the doctor easy for the senior?
- Allow plenty of preparation time for the elder who is mobility impaired, including the time before the scheduled appointment.
- Have the elderly person dress in comfortable, easy-to-remove clothing (including comfortable shoes).
- Collect everything the person will need well ahead of your departure time, including eyeglasses, prosthetics, X-rays and medications.
- Allow time to manage and load mobility devices, especially a wheelchair.
- Consider the weather when planning the route to the doctor. Icy roads, snow and rain are going to slow you down. If parking is an issue, then allow for that too.
- Allow time for a bathroom break once you reach the doctor’s office.
Consequences of Rushing an Elderly Person
Rushing is not an option, especially for frail elderly persons. Whether it’s getting ready for the appointment or interacting during the appointment, keep the mood unhurried and relaxed. The medical staff may become concerned if the caregiver is short-tempered and impatient. They’ll make a note on the chart if the patient appears to be overwhelmed from hurrying or is distressed.
There are disadvantages to rushing a senior who can’t get around as quickly as he used to:
- Hurrying puts the elderly person at risk for injury or a fall.
- Rushing puts both the caregiver and the elderly person under unnecessary stress.
- Loved ones with dementia may become much less cooperative when stressed or pushed too quickly.
- Important information is easily overlooked, lost or forgotten when people rush.
Consulting a Geriatric Care Manager
A Geriatric Care Manager can be a social worker, nurse, or other health and human service professional who is specifically trained in issues related to aging and elder care. The Geriatric Care Manager does what a family caregiver would do if he or she lived nearby and was caring for elderly parents. He or she can visit one’s elderly parents in their home regularly or upon request in order to:
- assess the situation;
- determine what types of care may be helpful for the elderly parents, such as help with housekeeping or meals;
- advise on safety issues;
- determine whether or not the elderly parents are receiving proper medical care;
- determine if non-medical help is needed like errands, house cleaning, etc.;
- advise on whether or not the elderly parent(s) can live alone or if more care, such as in-home aids or an assisted living facility is needed;
- arrange for additional services.
The Geriatric Care Manager will keep in touch with the families of elderly parents to make recommendations and answer any concerns. In addition, he or she can help hire in-home aids or find an appropriate assisted living facility in the area designated by the family caregiver(s). The Geriatric Care Manager may also be able to suggest ways adult children can help care for their elderly parents from a distance.
Cost-Effectiveness of Hiring a GCM
Many Geriatric Care Managers charge a lot. The cost may seem high, but if the alternative is taking time off from work and bearing the costs of traveling to care for elderly parents more frequently, the fee paid for the service may seem like a bargain. The Geriatric Care Manager is not a substitute for family visits. However, he or she is an expert who can make recommendations and lessen the need for “working visits” to family, where the sole purpose is to locate resources, make arrangements for help, and do tasks. In addition, some Geriatric Care Managers can be called to help care for elderly parents in an emergency.
Getting Elderly Parents to Agree to Meet with the GCM
Often elderly parents do not feel that they need help and would not be open to the idea of a visit with a Geriatric Care Manager. However, if parents are relying on their adult children for care or in emergencies, the adult children are entitled to provide that care in a way that they themselves are comfortable with. At the same time, it is important to respect elderly parents desire and right to be as independent as possible. Rather than trying to get parents to accept help they do not see the need for, it may be wise to enlist them as helpers instead by explaining that it is not comfortable being so far away and that it would be helpful for you to have someone in their town you can rely on to help you help them.
The Problem of Long Distance Caregiving
At times the long-distance caregiver feels guilty and unsettled. He or she may be worried about the condition of the elderly parents and have a gut instinct that they should not be left alone. Yet the caregiver is unable to be in two places at one time or to observe them on a daily basis. A Geriatric Care Manager can be the eyes and ears of the caregiver.
Feelings Associated with Caregiving of Elderly
Frustration: You may become frustrated with an older grandparent because you are so used to how they used to act. You may find yourself asking, “Why must I repeat myself 5 times before I get an answer?” or “I told her that important story last week, why doesn’t she remember?”
Anger: You may be feeling angry that your grandparent is changing, you may just be remembering how they used to be. Now is the time to start fresh. Activities that you once did in the past may have to be altered or changed.
Guilt: You may feel guilty if you find yourself not keeping in touch with your grandparents as much as you once did. Ask yourself why. Are you not sure what to say? Are you not sure how to act?
Sadness: You may feel upset that your grandparent is changing. Aging is a part of life and shouldn’t be seen as something negative. Feeling sad about a loved one who has dementia is quite normal. That is why it is important for your loved one to receive the best possible care.
Always Keep the Following in Mind:
- Treat your elderly loved one as you have always done. If you change, they may just ask why. Your grandparent is the same person inside.
- Stick to routine. If elderly loved one enjoys a certain activity, continue doing it even if it means you may have to help them a bit. It’s a small price to pay to see our loved ones enjoying themselves. And, I don’t mean “price to pay” in a negative sense. It means that if we have to alter our schedule a bit because Grandma likes to have tea and biscuits at noon sharp, then we should do all that we can because we love her. Of course, there may be times when this is not possible. If this happens, explain the situation to Grandma and then make plans for later that day.
- Concentrate on the now. You can talk about when you were little, but don’t expect things to be as they were several years ago. Plus, you are probably a different person than you were 10, 15, 20 years ago.
- Respect your elderly loved one. How often do we walk into a store where an elderly person has a difficult time hearing? The store clerk speaks up, but her tone changes as if she were talking to a child? This can be demeaning for the elderly. They may have a hard time hearing, but they certainly aren’t children. If this happens, simply talk louder and keep the same tone. If your loved one has Alzheimer’s, he or she may respond better to a certain tone of voice. Whatever works best for you, do it. As the old saying goes, “If it ain’t broke, don’t fix it.” I must note that voice and tone of voice are different. The tone is how we project our words such as speaking to a young child with a childish note. Raising our voices so one can hear is simply that; talk louder.
- Appreciate your loved on. Invite your loved one over for lunch or invite them to dinner. Remember holidays and try to visit as often as possible. This may be difficult if you live far away. There is a holiday called Grandparent’s Day. If you do live out of reach, send thinking about you cards and other tokens of your affection. Letters are also a good choice. Grandparents love reading letters and if they can’t see the words clearly, they will ask someone to read it to them. Or, you can send a cassette tape with your voice talking to them.
What you can do now:
- Develop that special bond with your grandparent. If you live close by, take him/her out to lunch, to the movies, or to the mall.
- Talk about what you both did in the past with one another and see if there are activities that you can do now, such as taking a stroll in the park or swinging on some swings.
- Never take anything personally. This is especially so in loved ones who do have dementia. Things might be said that aren’t meant. Take a deep breath and tell yourself that any remark is not directed at you.
- Look through photo albums together. You may just learn some new family history. Now may be a good time to begin a family tree.
- Tell stories to one another about growing up.
Importance of Keeping a Positive Attitude
Caring for elderly parents doesn’t have to be a negative experience, however, one that can help strengthen the bond between adult child and parent. It can also have a profound impact on children and nurturing in them the qualities of empathy and compassion towards elders. Remembering that aging is a natural life event can provide strength during the difficult times. Caregivers can gain an overwhelming sense of peace and pride in their efforts by knowing that their sacrifice provided their elderly parents with respectful and dignified care.
While there are many challenges to caring for an older person, the joys are also many. These are times for making special memories through discussions of childhood events, reviewing photo albums, and recording stories of the past. If an elder parent has lost memories and bodily control, these things may be difficult. In these types of cases, adult children must look deeply to see the person they once knew and still embrace the person their parent has become. It can help to cherish the little moments of connection, the small successes, and the smiles.