Family Issues
Family Issues covers some areas of family relationships, family members as PAs and other matters that can affect your relationships with family members. We'll discuss the following topics:
Though we are focusing on family on this page, some of the points discussed are applicable to close friends and personal assistants (PAs). Relationships between you and family members, friends or your PA are close and complex. It is important that these relationships be smooth and work well.
On this page, when we say family members, we also mean close friends and PAs.
Independence
One of the hardest things for family members to understand and remember is that you are an individual in your own right. You have the right to control your own life.
You have the right to be autonomous and to have time away from family, friends and the PA. This means that they should respect your individuality. They should respect your right to make your own decisions, to have things done the way you want them done, and to make other choices. Like everyone else, you live and learn from the choices you make.
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Confidentiality and Privacy
Privacy and confidentiality are basic rights. This is especially difficult for family members. They may feel that everyone in the family loves and cares about you, so they should be able to share whatever is "news" or information about you. They need to learn that any personal information about you must be kept private. It must not be shared with others without your permission. This includes all of the following:
- the tasks they do when assisting you
- your financial status
- the ups and downs of your health
- the nature of your disability
- family issues
- personal attitudes
- behaviors
- relationships
- sexual, religious or other information.
 Confidentiality and privacy work both ways. You need to honor the individuality and rights of family, friends and PAs, too. All parties deserve mutual respect; information you share with each other should not be gossiped about to others.
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Family as Caregivers
The easiest help you may get may be from your family. You are comfortable. You know each other. You don't have to advertise and interview for help. But, remember, the young people grow-up and move on with their lives; older people grow older and may develop their own needs. This topic addresses these and other issues related to family caregivers.
Your family may have adjusted well to caring for you, but over time everyone feels some stress. Family members can be so committed to helping you, or just being with you, that they ignore their own need for outside interests, companionship or time alone. This can lead to the family members feeling overwhelmed and depressed. Other family members may even be jealous of the attention given to you.
Well-meaning family and friends usually have your best interests at heart. However, the accumulation of life "stuff" will come out eventually. Rivalries among brothers and sisters may deepen. Overly protective parents, aunts or uncles, can become more protective of you. Friends may be concerned that something "might happen to you" and they would be responsible. All of the wonderful people who love and care about you can actually hurt your drive for independence.
It is your job to set them at ease. You can do this by being organized and in charge of how you want to live your life. If you depend on them for some personal assistance duties, see if you can get some additional outside help. This is very important for your spouse or partner. Husbands or wives usually think they can handle everything - housework, cooking, working, errands, and your care. And they can, anyone can - for a short period of time.
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How to Avoid the Pitfalls
This program can assist you in planning, setting goals, and preparing yourself to be in charge of your life. However, there are some things that you can do to help your family caregivers. These include
- Boundaries/guidelines
- Respite
- Live-in PA problems
- Backup systems
Boundaries/Guidelines
If you and your family have decided that some or all of your personal assistant services are to be provided by family members, you will want to take steps to support those family members. One way is to establish and maintain limits. A few important steps taken in the beginning can prevent problems in the future.
- Insist on being as independent as possible, doing as much for yourself as you can. It can be tempting for you to accept the loving care and attention that those who love you want to give you. However, this can make you lazy, cause you to lose skills and not develop new ones.
- Insist on hiring some outside PAs to help. This will provide support to the family caregiver.
- Insist on boundaries and a work schedule. This will prevent your care from becoming an all day, time-consuming task.
- Balance the needs of everyone concerned: the caregiver, the family, your care needs and the needs of your marriage or primary relationship.
- Schedule regular family review meetings. Use these meeting to check on how tired family members are. See what changes would make things easier such as hiring outside PA help.
Respite Help
What is it?
Most jobs allow for "coffee" breaks, holidays and vacation time. The family caregiver who serves as your PA is on the job all the time if you have not established the boundaries mentioned above.
Temporary assistance that allows your regular family caregiver to take time off for herself is called respite help. Scheduling respite help on a regular basis even for a few hours provides support and relief for family caregivers. It allows your primary caregiver to take time for herself to take care of her personal needs.
There are different levels of respite help. Respite can be a few hours once every week or so. It can be a full day or two off that is regularly scheduled. Or, respite could be a week or two for vacation, rest and recuperation.
Where do you get respite help?
Most respite help comes from other family members, friends or neighbors who volunteer to help without pay. However, it is recommended that you save these folks for emergency situations rather than regular respite.
Some churches and civic groups provide volunteer help on a short-term basis. It is better to use these formal volunteers or paid PAs for regular respite.
There also are a wide variety of organizations that provide respite care for pay. Two examples are
- daycare - a few hours for certain days of the week like adult day care centers
- respite - overnight facilities that provide respite services ranging from two days, a weekend, and up to two weeks.
Respite Help section adapted from Caregivers and Personal Assistants (pp. 29, 68-69, 87ff), by Alfred.H. DeGraff, Saratoga Access Publications, Fort Collins, Colorado. [Copyright Alfred H. DeGraff 2002.] http://www.saratoga-publications.com. Reprinted with permission.
Live-in PA problems
Problems can occur when your only personal assistant is a family member or a paid PA who lives in. Some of the things that can go wrong with the person providing PA services are
- she can become ill
- she may refuse to continue being your only source of help
- she may resign
- your personal relationship can go sour.
These are just a few of the things that can happen. That is why it is important to have some additional PA support, respite and a back-up system.
Backup
Everyone who uses personal assistance services needs a backup system. It is especially important if you rely on one family member or one live-in PA. If you cannot afford to hire outside salaried PAs, you should establish a voluntary backup system. Your backup system should include at least three friends who live nearby who can help you with basic personal assistant services. These special friends would agree to help you in a crisis or other emergency if there is a reason your live-in family member or PA cannot help. Three friends assure that in a crisis you would be able to reach at least one of them. Put each of their names on a button on your telephone speed dialer.
You will need to ask them to agree formally to be "on call". You will need to explain what you might need from them. In his book, "Caregivers and Personal Assistants", Alfred DeGraff offers the following suggestions of what you might need help with
- Help you get out of bed in the morning
- Come to your home if you are being abused or threatened
- Help you think through a crisis and make an action plan
- Help you feel empowered by being available so you know you are not alone in a crisis.
Backup section adapted from Caregivers and Personal Assistants (pp. 101ff), by Alfred.H. DeGraff, Saratoga Access Publications, Fort Collins, Colorado. [Copyright Alfred H. DeGraff 2002.] http://www.saratoga-publications.com. Reprinted with permission.
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