Understanding Family Challenges with Caregiving

Very few families are prepared for the challenge of long-term care for a loved one. This is because very few families plan for the contingency of needing long term care. The seniors themselves typically ignore the need for planning and the children or grandchildren are tied up in their own lives and as long as mom and dad or grandma and grandpa are doing fine on their own, little thought is made towards whether they might need help or not.

The need for care often arises suddenly and the family is unprepared. The aged loved one might have a fall and end up in the hospital. Or grandma may wander from home and get lost and the family realizes there is a dementia problem. Or perhaps the kids visit one day and find that their parent or parents are not feeding themselves properly or taking care of themselves in other ways. Or perhaps a visit reveals that a loved one is dealing with disability challenges. Any of a number of multiple issues dealing with aging, dependence on others or a change in health can confront members of the family unexpectedly. And even in those situations where the need for care is a gradual transition, the family is reluctant to do anything about it until something happens to trigger a decision.

Because no planning has been done, the person who ends up being the caregiver such as the spouse or the daughter is thrust into this situation without any adequate preparation. Children who are caregivers are often working and have little time to do research and find out what sort of help is available to assist them as caregivers. Perhaps the only time they have is during a lunch break at work doing searches on their computers.

Once a caregiver has been ushered into the role of giving care, there is often little time to do other than to provide care for the loved one. Shopping for food, picking up prescriptions or other items necessary for supporting a loved one become a burden. Trying to balance everything with the busy task of providing care is difficult. There is often little time left over for the personal needs of the caregiver. The caregiver is also often so consumed with his or her task at hand, that time to reflect and plan and search for better solutions for caregiving is lacking. Stress from providing care increases and thinking becomes confused. Caregivers often make poor decisions, affecting not only the care they provide but their own lives as well.

Very few families share the burden of caregiving. This burden usually devolves upon one person and though other members of the family may be supportive, they are usually very happy to let that person take the full burden so that they can go on with their lives. Those professionals who provide care giving support to families have seen this same situation over and over again. The situation of an overburdened caregiver is usually the norm and families working together is often the exception.

Not only is one person usually stuck with providing the care, but family members often criticize that person and may even develop resentment towards the caregiver. A sibling caregiver will often use the parents' funds not only for supplies and other necessities but often for the caregiver's personal needs. Sometimes other family members feel that the caregiving sibling is unjustly taking mom's and dad's money. This also provides justification for allowing the caregiver to assume the full burden without family support because family members think that the caregiver data is being rewarded for his or her services.

Putting Together a Family Care Plan

A family care plan can go a long way towards lessening the burden on a caregiver and resolving misunderstandings between family members. By working together, the family can grow closer together in providing care. Without any care plan and after the death of the loved one receiving care, feelings often bubble over, resentments intensify and families struggle to get along because of the challenges created by the need for care.

Things can even get worse. If other members of the family feel that the sibling caregiver had unfair access to the parents' savings and income, resentments over who gets what in an inheritance can develop quickly. Even though expenditures for providing care could have been legitimate, the suspicions are there. Fights even develop over keepsakes or treasures that the caregiver had access to and may have taken without giving other members of the family the option to inherit. These items often have little intrinsic value but have great sentimental value.

Every family should attempt to sit down and counsel together and work together to provide a plan for supporting the caregiver - working towards a common goal and making sure that potential disagreements relating to inheritance are settled prior to the death of the loved one.

Here are some of the important issues that a family care plan and agreement should address.

APPOINTING A FAMILY CARE COORDINATOR
Every family usually has a natural leader. Some families don't. The father or the mother could still be in charge or they may have relinquished their decision-making to a favored child. This favored child is looked to by other members of the family to provide the leadership for making decisions concerning care. This person may or may not be the caregiver. It is preferable that a person acting as a family care coordinator for decisions pertaining to what is best for the person needing care, is not the caregiver. By separating the caregiver from the care coordination, the caregiver can focus entirely on his or her job and look to the coordinator to provide all of the other support.

MAKING SURE END-OF-LIFE ARRANGEMENTS HAVE BEEN MADE AND FUNDED
Making sure that final directives are signed, wills and trusts are up-to-date, living wills are in place, powers of attorney are appropriate, and funding for a funeral and burial is in place should be the job of the family care coordinator. If no one is willing to step forward, unfortunately, the caregiver will be burdened with this additional responsibility. Perhaps in a family where there is a vacuum of leadership, the caregiver can assign other members of the family or friends to help with end-of-life issues. Or perhaps, an agreement must be made to hire professionals to provide the support.

FINDING GOVERNMENT SUPPORT PROGRAMS
There are numerous government support programs as well as potential long term care funding options through government programs. Most caregivers and their families know little about these programs. There is no one single source for locating all of the various options that are available to support caregivers and their families in the community. Unfortunately, caregivers often don't have the time to research such programs. This should be the responsibility of the family care coordinator if there is one. If there is no care coordinator, the family should consider hiring a professional such as a geriatric care manager to guide them through the maze of support programs and help them find provider assistance as well as financial assistance.

INVOLVING ALL INTERESTED PARTIES IN MAKING DECISIONS ABOUT CARE
Some families are challenged when it comes to providing care for a loved one at home. Perhaps all of the children are living far away and it is impossible for them to provide support for a loved one. Perhaps there are no children. Sometimes grandchildren or friends are involved in care. The approach to providing support for a loved one must not be a spur of the moment or flippant decision. Great thought should go into how to provide that care by involving members of the family. If there is no one to step forward or if the burden of providing assistance is too great in the home, then a decision must be made as to where to place the loved one to receive the best care. This may be an independent living facility, a government-funded group home or a nursing home. These decisions should be carefully considered by everyone involved in the person's life who is receiving care. A meeting of all of those who are involved should be scheduled and an appropriate decision made.

ASSISTING WITH CAREGIVING
Depending on the level of care needed, the caregiver may have things under control. If a great deal of time is needed for caregiving supervision for a loved one, the caregiver will need assistance if the loved one is to remain in the home. The care coordinator and the caregiver should not be shy about asking family members as well as friends or members of a church congregation to pitch in and help with the care. A caregiver who is burdened day and night overseeing a loved-one, will eventually burn out and will often become a candidate for long term care as well. This should not be allowed to happen.

PROVIDING LOGISTICAL SUPPORT FOR THE CAREGIVER
The caregiver providing support at home is usually challenged by not having enough time to do everything. It is often the case that the caregiver is a daughter or daughter-in-law who has her own family and may be employed as well. She is hard-pressed to balance the needs of her family with the needs of her parent or parents. She typically needs help in procuring things from the store, doing laundry, providing trips to the doctor, picking up prescriptions, cooking meals, cleaning both her home and the home of the loved one and so forth. Family members who are available should be involved in providing all of this logistical support for the caregiver. Ironically, family members are often available, but the caregiver fails to ask for help. This is where a family care coordinator becomes valuable. The care coordinator can focus on providing all of the logistical support and free up the caregiver for all of the other things she needs to accomplish in her life.

PROVIDING FINANCIAL SUPPORT FOR THE CAREGIVER
If, there are other members of the family who have the means to help, a caregiver should never have to fund caregiving costs solely out of her own pocket. This is simply not fair. On the other hand, caregivers will spend their own money simply because they are afraid or reluctant to ask for help. Again, this is where a family care coordinator can be valuable. The care coordinator is typically the family leader and as such does not have as much reluctance asking other members the family to step forward and provide financial support. Addressing these issues should be part of every family care plan.

PROVIDING RESPITE SUPPORT FOR THE CAREGIVER
Caregiver burnout can happen without the caregiver realizing it. The pressure of providing assistance, especially for a caregiver who has his or her own family to worry about, is extremely stressful. Because of the stress and the depression that often accompanies it, caregivers have difficulty making good decisions. Sometimes, caregivers are so overloaded that they develop mental and physical problems themselves. If there is family support, a caregiver should not be subjected to this sort of punishment. A family care plan should include scheduled commitments from family members to take over the job of the caregiver for a period of time such as a weekend or a week or even a month to allow the caregiver to receive some rest and recuperation. Family members who don't recognize this responsibility for the caregiver are being cruel and uncaring towards that member of their family.

DETERMINING HOW ASSETS PRIOR TO DEATH COULD BE PRESERVED FOR THE FAMILY
Many families are not aware of planning strategies to preserve assets from the cost of long-term care. Some government programs can be used to provide care or to provide income for that care and free up the use of those assets for this purpose. There are also legal strategies to preserve assets. Every family care plan should include a discussion on how to get assistance with preserving assets. If there is a way to avoid it, no family should dissipate those assets needlessly on the cost of long-term care.

DETERMINING HOW ASSETS REMAINING AFTER DEATH WILL BE DIVIDED
It is fairly common for members of a family to act noble prior to a loved one's death and disclaim that they have any interest in inheriting any assets. This is typically not true. Most family members are secretly concerned about getting something regardless of how much they insist that the money should go towards care for the loved one. Family members should recognize the existence of these feelings and bring them out into the open. A family meeting and care plan should frankly discuss what will happen with the assets and how they are to be used for care. Such an openness can help reduce or eliminate any resentments or animosities after death that could develop when someone feels that they have not received what they thought they should have received as an inheritance.

DETERMINING HOW KEEPSAKES AND SPECIAL TREASURES WILL BE DIVIDED
Even if there are few assets to divide up after death, every family has special keepsakes or treasures or written documents that were special to their loved ones. These things are often special to members of the family as well. Nothing can create greater animosity than something special that was promised to one child being discarded or ending up in the hands of someone else. Even though these things often have little financial value, they have tremendous sentimental value to those who desire them. It is extremely important that every family come together and decide who will get what after the death. We provide a form for family members meeting together in a care plan to fill out so that there is a written document that spells out who will get what.

DETERMINING HOW THE CAREGIVER WILL BE REIMBURSED, IF APPLICABLE
It is often the case that either to sooth consciences from the guilt of sticking one person with a load of caregiving or out of true desire to be supportive, families will agree to provide a salary for the family caregiver. Such an arrangement should be discussed when meeting for family care plan. Caution should be exercised when setting up such plans, because such an arrangement may disqualify the person receiving care from getting Medicaid assistance. A professional advisor who understands these family care arrangements should be consulted before setting up the plan.

The Family Care Coordinator

When it is feasible, a member of the family who has the capability of personally working with the family care plan should be assigned as a care coordinator. Choosing a care coordinator to help with the creation, the implementation, and the directives of a family care plan is important to making sure that the planning process runs smoothly. This person is not the caregiver. This person carries out the plan and supports the caregiver.

Here is why the care coordinator is so important. If the caregiver is a family member, that person is almost always thrust into his or her role without preparation. The caregiver typically becomes enmeshed in making decisions for medical care, arranging doctor visits or hospital stays and in providing services and companionship for the care recipient. As such, the caregiver becomes distracted from arranging family support, finding resources or committing to counseling and training. The caregiver needs the support and direction that the care coordinator gives.

The family care coordinator becomes the advocate and guide in making sure all of the pieces of the puzzle fit together. A coordinator can be a child, a close friend, a sibling, a trusted advisor, a professional social worker, a counselor or a geriatric care manager. This person has agreed to help make arrangements and to see that the written care agreement is being followed.

Below are some of the activities a care coordinator might perform.

• Make sure an assessment of the care recipient is made and a plan of care is designed.
• Become familiar with the community resources and planning strategies and help the caregiver use them.
• Make sure the caregiver receives counseling and training.
• If applicable, organize a family council and solicit caregiving commitments.
• Act as an advocate for the caregiver and make sure people honor their commitments.
• Help with transportation, arrangement of meals and visits from formal caregivers.
• Help with financial decisions if needed.
• Maintain copies of legal documents and make sure they are up-to-date.
• Accompany the caregiver on meetings with government agencies and provide advice with decisions that have to be made.
• Contact appropriate professional planners to advise about and implement financial strategies.
• Make sure that professional care providers are competent and that all professional options have been explored.
• Maintain copies of financial preparations to pay for care and help with putting them into effect.
• Make sure the care management plan is followed.

Remember, the care coordinator and caregiver should not be the same person, especially if they are both family. The care coordinator needs to support and provide resources for the caregiver. It is extremely difficult for the caregiver and the coordinator to wear the same hat.

Family Mediator

If there is difficulty with involving family members or others agreeing on a plan of care, then use an elder or family mediator. Some professional care managers are also mediators.

With the consent of everyone who is part of the care plan, you can secure the services of a mediator when holding the care planning meeting. It is surprising how many families are torn apart because of feelings and jealousy that happen with a parent's long-term care. The mediator will help each person express his or her feelings and concerns and resolve any conflicts.