Feelings of grief, guilt and relief are often the aftermath of a decision to place a chronically ill loved one in a facility.
Maria brought her mother Luisa to live with her from Peru because she was no longer able to live on her own. There were no relatives available to care for her in her native country. Luisa lived in Maria’s one-bedroom apartment in San Francisco.
Luisa did not qualify for any free services, so everything was paid out of pocket. Maria had to work full time and was not able to afford in-home help for her mother. Luisa attended an adult day care program for a few months but it did not work out. Maria had no choice but to leave her mother alone while she worked. When Luisa started wandering and getting lost, Maria found that there was no other option left but to place her mother in a facility.
This was a difficult decision for her because she truly wanted to be able to care for Luisa in her home. There was no possible way to do so and keep her mother safe. Maria came to an FCA support group initially to discuss her feelings about placing her mother. She found it difficult explaining repeatedly to family and friends why she had made this decision. She felt guilty because many family members told her that she should have found a way to keep her at home. The guilt was worse when she visited and her mother asked to come home. Even though
Maria knew in her heart that she had no choice, the situation was difficult to accept.
Many factors go into the decision to place someone you love in a facility, whether it is a nursing home, assisted living or dementia facility. Some people find the physical demands of caring for a loved are too much; others may feel it is inappropriate to do personal care for an opposite sex parent or to take care of someone who is incontinent. Sometimes, the lack of sleep related to caring for someone who "sundowns" (or becomes more active or agitated in the evening) may prove too challenging; for others, the stress created by family conflicts over caregiving issues is a deciding factor. How one deals with life after placement depends somewhat on what life was like before the decision was made.
When a loved one moves out of his or her home, the caregiver has to deal with many emotions, as well as adjust to a change in his/her role. FCA offers a once-a-month support group in our San Francisco office to help caregivers during this difficult time.
Guilt and Care
Caregivers sometimes feel that they should be able to continue caring for their family members in the home no matter how difficult the situation is. Adult children feel guilty because, just as they were cared for as children, they should be able to reciprocate and care for their parents when they are in need. Spouses feel guilty because of vows they made to care "until death do us part." It is difficult to let go of these guilt feelings because there is a sense of abandoning a family member. One needs to continue to remind oneself of what went into making the decision to place, the pros and cons, and remind oneself that there is deep and profound regret that things got to this place. Guilt is saying we did something wrong, regret is sorrow that there was a situation that made this decision necessary.
When dealing with guilt, caregivers often feel that the facility is not taking as good care of their loved one as they did at home. This is probably true, because the care that is given at home is done with a sense of love and responsibility that the attendants at the facility do not share. However, this does not mean that your family member is not getting good care, just a different kind of care. It is easy to find fault and blame the facility because of guilt.
The other form of guilt can come when a caregiver does do something nice for him or herself and enjoys life away from the care receiver. "How can I be having a good time," caregivers think, "when my loved one is in a nursing home?"
In FCA’s Life After Placement Support Group, members can share their feelings of guilt and look at them from different perspectives. Also, members get reinforcement from other members for having made the decision that was right for them at the time. Additionally, the group helps caregivers learn effective communication tools for working with facility staff in a proactive way.
A number of positive changes can result from placement, for example, having more quality time with the care receiver because someone else is doing the day-to-day physical care; finally having a chance to catch up on sleep, therefore being in better spirits when visiting; having time to take care of one’s own health needs when there wasn’t time before; and knowing that the care receiver has 24-hour care.
Although not doing the day-to-day physical care, caregivers are still involved in the care of their loved ones after placement. Families are still responsible for major care and health decisions, while professionals at a care facility make the daily-decision making around care. End-of-life decisions are always hard to deal with, but it is necessary to look at options when a loved one is in a facility, because the caregiver might not be there when an emergency decision has to be made. There can be a feeling of loss of power as a result. Often caregivers don’t know what to do with their new free time and feel like they are "out of a job." The support group helps caregivers with this transition.
Sometimes it helps to prioritize the issues in order to deal with the most important ones and not worry so much about minor ones—not getting the proper medicine is important; the fact that the socks don’t match is not. Developing one’s own life away from the care receiver takes time, but reconnecting with friends, church, hobbies can all be healing, as is defining your own life again, apart from being a caregiver.
It is essential for caregivers to connect with resources such as the ombudsman or CANHR (California Advocates for Nursing Home Reform) when there are difficulties in the facility that cannot be resolved in other
ways. Medicare’s website, at www.medicare.org, has information as well.
Caregivers sometime feel helpless when they feel the facility staff is not listening to them. Knowing that there are advocates who can investigate concerns on the care receiver’s behalf is vital for the caregiver. Attending quarterly reviews held by the nursing home is also a way to be involved in getting the care the care receiver needs. Most facilities also have family councils that meet regularly. They are a way for family members to express concerns and get support from others.
Wanting to Go Home
Caregivers find it hard when someone with Alzheimer’s or another dementia repeats that she wants to go home. In addition to the "Life After Placement" support group, FCA’s It Takes Two class is useful for caregivers, even if the family member no longer lives at home. The class teaches communication strategies for dealing with a loved one with dementia. Families who place a loved one in a facility are still coping with the same issues related to difficult behaviors and communicating with someone with dementia. It is hard not to feel guilty when a loved one asks to go home, but understanding that he or she is looking for a place of comfort, rather than a physical house, can help the caregiver to be reassuring to the care receiver.
Even though a family member has been placed in a facility, caregivers are still concerned about finances and long term care. They are worried about spending, estate planning, powers of attorney and their own options as a result of the decision to place. It is rare not to think about "what will happen to me when I get to this place" after having been through the experience of placement of someone else. All this information is necessary to discuss, especially when the caregiver is paying privately and running low on finances. The Life After Placement group offers an opportunity to discuss these issues with knowledgeable FCA staff and with other caregivers who are experiencing similar situations.
The group is offered the third Thursday of the month from 5:30-7:00 p.m. in FCA’s Market Street office. Call Lois Escobar at (800) 445-8106 for more information.
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