Caregiving can be very stressful and demanding. In the case of a healthy spouse or a child living with the disabled person at home, caregiving can be a 24 hour, 7 day a week commitment. But even for the caregiver not living in the home, looking after a loved one or friend can consume all of the caregiver's free time. Surveys and studies consistently show that depression is a major problem with full-time informal caregivers. This is typically brought on by stress and fatigue as well as social isolation from family and friends. If allowed to go on too long, the caregiver can sometimes break down and may end up needing long term care as well.
A typical pattern may unfold as follows:
- 1 to 18 months--the caregiver is confident, has everything under control and is coping well. Other friends and family are lending support.
- 20 to 36 months--the caregiver is taking medication to sleep and control mood swings. Outside help dwindles away and except for trips to the store or doctor, the caregiver has severed most social contacts. The caregiver feels alone and helpless.
- 38 to 50 months--Besides needing tranquilizers or antidepressants, the caregiver's physical health is beginning to deteriorate. Lack of focus and sheer fatigue cloud judgment and the caregiver is often unable to make rational decisions or ask for help. It is often at this stage that family or friends intercede and find other solutions for care. This may include respite care, hiring home health aides or putting the disabled loved one in a facility. Without intervention, the caregiver may become a candidate for long term care as well.
Suggested ways to spread the burden:
The caregiver should try to receive training and counseling on self-care, elder care and asking for help;
The family should formulate a plan of action prior to making a caregiving commitment;
The caregiver should have the sole responsibility of day to day care;
Appoint a Family Care Coordinator, who is not the caregiver to manage finances, doctor appointments and support and care of the caregiver;
Execute powers of attorney for financial matters and a healthcare power of attorney along with a HIPAA release and living will in case of incapacity;
Make end-of-life arrangements;
Make sure all wills are locatable and both the will and trusts are up-to date;
Find government support programs if necessary;
Investigate reverse mortgages in the case of owning a home and if the parent did not do medicaid planning prior to the 5 year medicaid 'look-back' window;
Assist with caregiving, provide logistical and respite support for the caregiver
Determine how Keepsakes and special treasures will be divided
Determine whether the caregiver should be reimbursed;
Roles for family members other than the caregiver
The role of the family care coordinator makes sure an assessment of the care recipient is made and a plan of care is designed along with several other responsibilities: .
Become familiar with the community resources and planning strategies to 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.
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.
Organize a Care Planning Meeting
If one person has been designated as the family care coordinator and wants the other persons attending the meeting to give support with respite care, transportation to doctors, etc., everyone needs to be aware of this and in total agreement to do it. All must also be willing to work with the member of the family, friend or professional who is the care coordinator. If each attendee is given a copy of the instructions and wishes, he or she will be more understanding and supportive. If the family care coordinator and/or the caregiver is not a family member, it is important that the family know this and that they are willing to work with these persons in support of the care.
We keep saying “IMPORTANT” as we talk about bringing the participants together. Experience has shown that even families that are close can quickly grow angry, jealous and hostile towards each other when an aging parent begins to need long term care. If a sibling moves into the parent’s home, others can easily be suspicious of ulterior motives and fear to lose their inheritance. On the other hand, the child doing the entire care taking becomes bitter and feels there is no support or help from siblings.
Every family is different. Some families are close and some have never been compatible. Nonetheless, all family members should be invited to the agreement meeting. If you feel the communication will be strained, consider having a professional mediator present. The mediator will be able to keep things calm and running smoothly and help work out each person’s concern. Make sure you get everyone's consent before bringing in a mediator. Allow participants to voice their concerns and give suggestions. Encourage each person to tell what he likes and dislikes about the care plan. For those who disagree, ask how they would like to see that part handled. The person needing the care is the ultimate decision maker. But if a small change will make everyone more supportive, it is worth it. It is very important not to dictate but to encourage attendees to communicate their concerns, their desires or their suggestions and be a part of the long term care plan.
Suggestions on how to Conduct the Meeting
The first step to holding a meeting, and perhaps the most difficult one, is to get all interested persons together in one place at one time.
The person conducting the meeting can be a parent or one person of a couple who are doing their planning, years before the need for care arises. A meeting on behalf of someone already receiving care or needing care in the immediate future could be conducted by that person or by a member of the family, by an adviser or a friend. The person conducting the meeting should be someone who is respected by all those attending. Preferably, this is the Care Coordinator.
Copies of the care plan should be prepared prior to the meeting and presented to those attending. Discussion is encouraged and we recommend that the person in charge not dictate but encourage input from everyone. After a thorough discussion of the issues and the presentation of the solutions to the problems that will be encountered, there should be a consensus of all attending to support the plan. If the plan needs to be altered to meet everyone's expectations then by all means do so if that can be done. But it is not always possible to please everyone so there must sometimes be compromise.
The end of the meeting should consist of asking everyone present to make his or her commitment to support the plan. This might just simply be moral support and agreement to abide by the provisions or it is hoped that those attending will volunteer to do something constructive. This might mean commitments to providing care, transportation, financial support, making legal arrangements or some other tangible support.
Create a Family Caregiving Agreement
A Written Agreement Is Better Than a Verbal Agreement. All good intentions seem to be forgotten with time. Without a written agreement and within a few months, family members, who were so supportive to begin with, will be distracted by other issues and typically will not live up to their commitments. If there are vocal commitments to help with transportation to doctors, give respite to the caregiver or other commitments, write them down on the care agreement. To help with the commitment, each person pledging help should sign the agreement.
Even with the written agreement, family members often renege on their support. However, the written agreement is valuable. Showing those who are not living up to their duty a copy of a written pledge has more weight with persuading them to live up to their commitments by asking them for help. It is so typical that when going back and asking for the help that was originally offered, all sorts of excuses are offered for not providing that help. Even though it is not a contract, a written and signed document carries much more weight in reminding them of their commitment than pleading for assistance.
If an agreement is not produced during this meeting, then an effort should be made to have additional meetings until an agreement is reached. If no agreement is eventually reached, then the plan must go forward as outlined, with the care coordinator in charge, and hopefully no major family disputes or unsolvable problems will occur. When an agreement is reached you will want to make copies of the completed form to give to everyone who attended the meeting or who is involved in your plan.