Caring for aging parents, or loved ones, is often times difficult. Unfortunately, there is no one “how-to” manual that will work for everyone. Face it, as we and our society ages, we incur issues … whether they be serious health, mental or physical disabilities, we need to find the solutions that work best for us and our loved ones.
Here are some common problems that we have come across or heard frequently, followed by our helpful, real life solutions. (Click on arrows to expand for more information.)
Problem 1: Diagnosis of a Chronic Illness
Your aging parent, or loved one, just received a diagnosis of a chronic illness. You wonder how this will affect his/her life and the lives of the rest of the family members.
Step 1: Information
- If a medical treatment and/or procedure is recommended, always request a second opinion AND seek medical clearance for the procedure from your primary care/internal medicine/cardiology physician.
Get recommendations from several physicians and trusted health care advisors about the best physician in your area to do the treatment and/or procedure.
Begin to get educated about the diagnosis/condition. Seek information from disease specific organizations, as these are the places where you will find the most specific information and also options for treatments and experts in the disease who can guide you in decisions about treatments. These organizations may also be able to point you to local experts/specialists for second opinions and treatment options.
Caution: When looking on the Internet for medical information be careful about prognosis and potential other diagnosis that may be related to the primary problem. The Internet CANNOT provide a differential diagnosis, prognosis or treatment options for your specific individualized situation.
The Internet is useful for understanding the questions that you may need to ask your medical professional about the disease, treatment options, potential trial treatments and other ways that you can support yourself and your loved one during the crisis. This may include information about nutrition, hydration, activity levels and expectations for the effects of the treatments.
Step 2: Communication
- Share the information about the diagnosis with members of your immediate family – siblings, aunts, uncles and children who are old enough to understand that you will be distracted because of your concerns for the person needing care. When speaking to others, it is a good idea to provide only factual information, to allow others to ask questions, and provide input about their concerns. Everyone who can be supportive should have the opportunity to participate in care and care decisions, whenever possible.
Questions raised by other family members should be noted so that they can be discussed with the doctors, including second opinions and specialists.
It would also be helpful to create a system for communicating simultaneously with all family members. This can be done using sites on the Internet or group emails. This will help the primary caregiver by making his/her job a little easier (communicating once to everyone); it will enable all members to share equally in the same information (eliminating competition, hurt feelings, oversights); it will enable family members & friends to offer help, support and respite to the primary caregiver by letting everyone know about appointments, treatments, the emotional status of the care recipient and others; and it will keep everyone informed so that they can manage their own inputs/needs.
Keeping secrets about health concerns adds to the stress of all family members. Ultimately, it will be impossible to keep the secret and those who find out will be hurt that they weren’t included in the information and given time to prepare emotionally for coping with outcomes. Even when a parent is reluctant to share serious news, it is important to have health providers encourage their openness. Most of the time people are not willing to share information out of fear of being a “burden” to others. Unfortunately, not knowing but sensing that things are not good usually results in greater burden and fears than being included in the discussion, the treatment and the mutual support that can come from caregiving.
It is important to maintain hope even in the face of serious diagnoses. With so many medical advances in recent decades, many serious illnesses have become chronic health concerns rather than an indication of impending death. Chronic illnesses are their own challenge and will be discussed in another section.
Step 3: Action
- Make appointments right away for second opinions. It is sometimes difficult to get appointments with specialists, so you want to start the process as quickly as possible. Sometimes your primary care physician can be helpful in arranging appointments with specialists. Taking action immediately will help everyone cope with the stress caused by the “not knowing” – which is often more painful than having a plan.
Along with these appointments, it may be helpful to seek out a care manager, counselor or therapist who can begin to support individual members of the family who may need objective professional support to cope with their concerns. Everyone reacts differently to life challenges and for those who react with greater levels of anxiety, fear, immobility or difficulty with decision making, an outside professional can be very helpful.
Problem 2: Siblings working together
Siblings each see their parents from their own perspective and the prism of their own life stage, history with a parent, birth order and coping skills. Different perceptions of each child may cause conflict over “what to do about mom/dad.” The stress of sibling rivalries, differences in coping and availability to help sometimes causes more stress than the needs of the parent.
This is one of the reasons that sharing information from the start is helpful. Everyone gets involved at the same starting line and no one is left out. Each child or family member will cope in their unique style. Some will cope better than others emotionally. Some will be more or less available to provide care than others. Some may even opt out of participating in care because of their own challenges or relationship. Siblings and other involved family members need to open communication so that expectations will be apparent from the beginning.
Step 1: Sharing Knowledge and Abilities
- Once the diagnosis has been made and plans are begun to move forward with treatment, it will be important for family members to communicate on a routine basis about the needs of the parent and about each person’s own needs. Family meetings, which can be held in person or virtually, can help each family member have an opportunity for input, for getting and giving support and for defining their role in the family situation.
It is critically important that parents be involved in these conversations, especially at the beginning.
If this is a family that has a history of talking about serious issues, life stage changes, illness and caregiving it will be easier to initiate these discussions. Parents should be encouraged to talk about their diagnosis and to express their preferences for who should care for them, in what setting(s) and in what manner. Caregiving often begins with limited and episodic needs. If the family member makes a good recovery, then care will decrease over time. When caregiving becomes more chronic it is important for family members to have the expectation of shared information, joint decision making whenever possible and consensus building about what is in the best interest of the parent and the primary caregiver(s).
This means that each family caregiver needs to be able to express what they can and cannot do in relation to caregiving. A family member who is far away may be able to take over (with the consent of the parent) help with things such as bill paying, handling insurances and providing respite care to the primary caregiver. If someone is a good researcher, or has contacts in the healthcare field, s/he might be the one who organizes medical appointments and arranges for home modifications or medical equipment. The parent should specify who they prefer to take on different tasks whenever possible, but it is also wise to have people take on roles for which they have knowledge, capability and/or experience.
Even when parents ask certain members of the family to be more involved than others, the primary caregiver MUST be encouraged to ask for help, for periodic breaks and for emotional support. This also means that other family caregivers, who may not be as involved on a daily basis, MUST be encouraged to offer help, so that they maintain involvement and support for the other family members, even when they cannot provide care themselves. Family members cannot assume that the primary caregiver doesn’t need help/support simply because they don’t ask for it.
Step 2: When Sharing is a Challenge
- For families that don’t have a good history of communication and/or relationships, caregiving poses an even larger challenge. It is common for families with less cooperative history to have more conflicts around caregiving.
Whatever the reasons for challenging relationship history, it is important to remember that caregiving is NOT about the past. Caregiving is about the present and what is in the best interest of the care recipient. Caregiving decisions need to be based in an understanding of what the care recipient wants, including the lifestyle, preferences, resources and emotional needs they have. Whenever possible, care should be provided in a manner that is consistent with how they have lived their life thus far. It should respect their values for what is important for the maintenance of dignity and respect.
In situations of family conflict, it is a good idea to hire an outside professional, such as a professional care manager who can assess the situation and help to design a plan of care that is consistent with the realistic wishes of the care recipient, and his/her perceptions of their own needs, while supporting the family members. A care manager can often mediate between the needs of the elder and the needs of the family member, while building a plan for support of each individual. Additionally, a care manager can help each family member to develop a realistic perspective on the options for care, costs, step by step implementation of the plan, advocacy with health and community resources and decision support for future decisions.
Step 3: Sharing when Care Recipient is Resistant
- For families in which the care recipient, is unrealistic or the cause of the conflict among other family members, it will be necessary for family members/caregivers to learn how to set limits and work with the parent in a respectful manner. For parents who are overly demanding, family members need to learn not to get into discussions about how much they will or won’t do, but positively state that this is what I am able to do.
For parents who set up competition between siblings, this is a time for the siblings to learn to cooperate with one another rather than vying for favor from the parent. This requires a great deal of maturity on the part of siblings and is not always possible because the siblings themselves may not perceive the parent as part of the problem. Again, outside objective support may be the most appropriate manner to begin to heal differences and learn to relate to the parent in a unified and mutually supportive manner.
Sometimes there is one person to whom the parent turns for advice. This might be a family member, such as a brother or sister; or it might be a professional person, such as a financial advisor, attorney, physician or someone else who they deem to be an “expert”. This person can help to influence the parent to make more realistic (and sometimes less demanding) decisions.
Problem 3: Should care recipient still live alone?
How does the family decide how much risk it can accept when an aging parent lives alone and puts limits on the amount of assistance she or he will allow?
Step 1: Looking Back before Looking Ahead
- The first thing for family members to think about is how this aging parent has always lived their life in the past.
Questions that family members can ask to help gauge the potential risk tolerance of the care recipient
- • Was the parent an adventuresome person, who took risks in their hobbies (flying, climbing, boating, diving, etc) and in their personal and business life (was the person an entrepreneur, manage their own investments); or was the person more cautious and conservative, feeling that it would be too challenging if things went wrong?
• Was the person able to cope with setbacks and challenges, including disappointments, medical issues and losses; or did any change in routine, expectations or health cause this person to become more dependent, more in need of support, less happy?
• Was the person more private and modest; or did this person create opportunities for socialization and for sharing information about his/her private life and business activities?
• Click here for a checklist to inspect the home environment.
- • An aging parent who is more cautious is likely to be more accepting of help, especially if it is introduced slowly. This means that it may be easier to begin to provide services on a part time basis. Introducing a driver with a schedule of activities, could be a way to start services. Helping with shopping and meal preparation 2-3 times per week is another good example of how to start services slowly. Creating a safer environment with grab bars, a shower seat and a raised toilet is another good way to start the introduction of support without negatively impacting the person’s sense of autonomy and privacy.
• A person who is more of a risk taker, who is more private and/or who is more independent minded is likely to be more reluctant to accept even limited amounts of assistance. Although this “stubbornness” about having help seems to be a problem to the family members, it is necessary to remember that this seeming problem may also be the parent’s greatest strength. Their “fight” and independence” will enable the person to be more engaged in meeting his/her own needs; will help him/her to feel more in control; and will help to maintain a sense of dignity for longer amounts of time.
• Children of strong, independent minded parents need to respect that strength and understand that even if help was more present, it would not necessarily prevent a crisis from occurring. Adult children also need to understand that a parent’s refusal or acceptance of help is not about the child or the relationship between parent and child, it is about the parent and his/her sense of self. Sometimes families may need to wait for a crisis to occur before the “ideal” services can be implemented.
Step 2: Ideas for introducing services slowly:
- • If there is a housekeeper, who is a trusted member of the household, perhaps that person can increase their hours and have tasks added to compensate for things that are becoming more challenging to the parent, such as shopping, cooking, transportation;
• A personal emergency response system (PERS) that enables the aging parent to be alone, but access emergency services quickly if there is a fall, a medical episode or some other problem;
• An ID bracelet with information about an emergency contact and primary diagnoses (these can be made to look like attractive jewelry for those who need to have that appearance);
• Introducing a healthy meal delivery service to assure proper nutrition;
• Family members making routine, unannounced visits to see how the parent is doing on a more frequent basis;
• Privately enlisting friends or neighbors in some limited assistance for checking on the person and notifying a family member of any concerns;
• Having bills paid automatically from the bank, credit or debit card so that the care recipient doesn’t have to worry about them so they have less to be concerned or anxious about;
• Using Skype/FaceTime or other Internet based services to “visit” with the care recipient, even when in person visits are not possible. This helps to keep the person socially engaged, as well as giving family members a visual sense of how they are doing;
• Encouraging the person to attend a social or health program for elders. Programs are becoming more sophisticated in many communities and offer literary classes, dance, volunteer opportunities, inter-generational programs, crafts, field trips and other engaging and meaningful activities
Problem 4: Coping with the Loss of a Parent
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