Most people who are currently providing live-in care for a parent or relative did not expect to become caregivers. Several would probably even have denied it was possible that it could happen to them.
As one daughter described it, "One minute you're minding your own business, living a life you enjoy. The next minute, the phone rings and it's the hospital, or you get an email from your Mom's neighbor saying that your Mom is doing the gardening in her nightgown. And just like that, you disappear, and your life as a caregiver begins." When a random event turns your life upside down, it's normal to have feelings of ambivalence, anger and frustration. You may even resent the person who needs care, even if it's not their fault.
In this post, we'll look at common caregiver reactions and provide some tips for dealing with typical feelings that may evolve. Next, you'll find a list of resources for respite and private duty care, as well as a list of places that offer support groups for caregivers.
When if first becomes clear that your loved one is going to need ongoing care, and that you will be the person primary responsible for providing it, your first feeling will probably be ambivalence. On the other hand, you may think, "I'll do anything I can for Mom. After all, she took care of me". On the other hand, you may think, "But how will I make time to give Mom all the help she needs?" Ambivalence can lead to feelings of shame: "What kind of daughter am I, anyway. How can I be so ungrateful?"
Ambivalence, however, is perfectly normal when facing any kind of life change, especially one that is not of your choosing. The best way to handle ambivalence is to acknowledge it, and to be willing to gather with other family members, ask the hard questions, and solicit the assistance and advice. You may find that you, yourself, don't have to take on all the responsibility for caregiving.
Your life has been turned upside down, and you have a lot to be mad about. You may be angry with your loved one for being frail or ill. You may be angry with the other family members that don't step up and help. You may be angry at God, or at the doctors who weren't able to help your loved one, or at the city council, which recently cut service for seniors.
Once again, your feelings are normal. Find a trusted friend, member of the clergy, mental health professional, support group, or family member and talk about the anger and resentment you are feeling. If you resent your loved one. Once you fall into a caregiving routine and find the support you need, your resentment usually lessens, though it may never go away, altogether.
A word of warning: If you are angry at your loved one and resent them to the point where you have thoughts of hurting them, physically or emotionally, you need to step out of the role of caregiver. In situations like this, home care agencies can make a world of difference to your mental health.
One family caregiver says, "Now it's old hat, but the first time I had to give my mother a bath, I went to my room and cried for an hour." Being a caregiver often means providing your loved one with the most intimate care imaginable: bathing, examining skin for pressure ulcers, cleaning the genital area, changing diapers and more.
No matter what the relationship between you and the person needing care, these moments can be awkward and embarrassing. If either party is truly humiliated by having a loved one provide personal care, the family might want to consider hiring a caregiver from a home care agency like Home Care Assistance to handle the more intimate aspects of caregiving. These options will be discussed later in the post
At one time or another, your loved one is likely to develop one or more behaviors that you find extremely frustrating. Maybe you're an upbeat person by nature, and your loved one has sunk into a deep depression. Maybe your loved one gets into your private papers, or gossips with her friends about your life, or refuses to follow the diet the doctor ordered. When you're feeling frustrated, the most healing thing you can do is bring your problems to another caregiver, someone who will understand and sympathize with you, and someone who might even have some valuable advice.
Caregivers often develop strict routines that help get them through the day, for example, the person who is receiving care should eat at exactly 9:00 AM. Laundry must be finished and put away by 10:30 AM. The senior then helps out with small household chores until time for lunch, and so on.
There is no problem with developing a routine. People who require caregiving generally like knowing what is going to happen and when. It takes some of the uncertainty and fear out of their day and gives them a sense of control.
Problems can occur, however, if you stick so closely to your schedule that a single interruption or change of plan spoils the entire day. Being inflexible about routines can also make it harder for others to help you, because they are unlikely to do things exactly as you would.
Debra Stanson, who works with hospice patients recalls a caregiver who was becoming overwhelmed with the amount of care her father needed. Debra located a volunteer respite program in the are that would provide caregivers four hours per day, two times per week, so that the daughter could take a break. The next time Debra visited the family, she asked the daughter how the respite care was going.
"Oh, I put a stop the that," the daughter said. "That girl wouldn't do what I told her!" "In what way?" Debra asked. "She put the towels on the left side of the cabinet instead of the right site." Debra was unable to convince the caregiver that this small slip from routine, which could be remedied in a moment's time, was not good reason to reject the whole service.
If you see yourself in this story, try to release that iron grip on control and let others help you. True, they may feed your parent at 9:30 AM instead of 9:00 AM, and yes, you might find blue socks in the drawer for white socks, but overall, these are tiny issues that shouldn't prevent you from getting help from others who mean well and want to make your life easier.
Being a caregiver of an older adult is a full-time job. If you let it, it can consume your whole life. You have no other role except "the caregiver." You forget that you are also a wife, a mom, a CPA, or a member of your local church.
Yes, being a caregiver is a significant part of your identity now, but you are much more than just that. So be sure to take time each day, even if it's just a few seconds, to acknowledge and revel in other roles that you have in your life. Do something just for yourself.
If it feels selfish, consider this: the more rich and full life you lead, the lesser the chance that you will burn out and become unable to provide care to your loved one. You have to take care of your own needs before you can take care of others.
According to the Merriam-Webster Dictionary, respite means, "A short period of rest or relief from something difficult or unpleasant." Respite care is usually provided by someone who comes to stay with your loved one for a few hours so you can take a break. A respite caregiver might read your dad the newspaper of fix a simple lunch.
There are many potential sources of free or low-cost respite care: Family members, friends, neighbors, church members, and volunteers from social service agencies. In fact, the hardest part about finding respite care is steeling your nerve and asking for it. So many caregivers "don't want to impose," or "would hate to have someone feeling like they had to help me."
The truth is that the important people in your life probably want to help you. They just don't know how. So, the next time somebody says, "Call me if I can help," take a deep breath and say, "I have sme errands to run Friday morning, Could you come over and sit with Dad for a couple of hours?"
If the first person you ask says no, ask again. And Again. Ask your clergy to put an announcement in the church bulletin that you're looking for helpers. Call agencies that deal with your loved one's injury or disease and ask if they are aware of any resources for volunteer or low-cost respite care in the community
If you're absolutely too shy to make these requests yourself, track down an outgoing friend or family member who has offered to help and say something like, "I need you to make some phone calls for me today. Can you find a few people who would be willing to stay with Dad a few hours every week?"
Private duty workers usually have training and experience with senior in-home care. They can usually help with all aspects of care from transferring, dressing, bathing, and toileting to meal preparation, mental stimulation and transportation.
While caregivers can be hired through a job listing or the Internet, there are several pitfalls to this scenario. Hiring a worker privately means you are responsible to do background checks and to report what you pay the worker for tax purposes since he or she would be your private employee. There is no company insurance to rely on in the unfortunate case of damage to the home or financial abuse and a no-show from an unreliable caregiver means your loved one will be alone for an indefinite period of time.
Home care agencies also provide private duty care, and reputable agencies have high caliber caregiver employees who make all the difference to patients and their families. Agency caregivers are usually insured and bonded which means there is the peace of mind associated with insurance coverage. They have also been through thorough background checks, and all payment issues including taxes are addressed through the agency. Furthermore, if you don't like the first caregiver the agency assigns you, you can request another one. If one caregiver is unable to come to work on a day when you need her, the agency will have back-up caregivers that can be assigned on short notice.
There are some programs that can help pay for the cost of agency care. And most long-term care insurance policies will pay for in-home private duty care. Depending on where you live, your local senior services program may be able to cover the cost of a few hours of private duty care each week.
Home healthcare is a skilled service covered by Medicare and various private insurance companies. It is tailored for people who are home bound, and who require the service of a nurse or a physical, occupational, or speech therapist. While your loved is on home healthcare, a home health aide may be assigned to help with personal care. Unlike respite care and private duty care, which you can arrange yourself, home healthcare must be ordered by a doctor.
Reasons why a doctor might order home healthcare include wounds such as bedsores, an unstable medical condition that requires monitoring, a need for IV drugs, a need for rehabilitation services to return your loved one to a prior level of functioning, or a new diagnosis or treatment that you and the patient must learn to manage.
Medicare paid home healthcare typically only lasts a few weeks or a few months, but it is a great alternative to trying to get your loved one out to see the doctor. Once the home healthcare period is over, you might consider hiring a private duty home care agency to continue to offer care.
Hospice care is appropriate if your loved one has a life-limiting illness that is expected to result in death in six months or less, and if they have stopped all curative treatment for the illness. Like home healthcare, it must be ordered by a physician. The hospice team involves a case manager who coordinates the care with you, the patient, the patient's doctor, and the rest of the hospice team. Other team members might include an LPN or INN, a hospice aide to help with personal care, a medical social worker to assist with emotional support and community resources, a nondenominational chaplain for spiritual support, and a volunteer who can help with respite care.
The goal of hospice is to manage symptoms and help the individual live the last months as fully as possible. A person on hospice does not have to be home bound, and if they feel well enough, they are encouraged to get out and do the things they enjoy.
After six months on hospice care, the individual is again assessed by a doctor. If the doctor finds that a terminal illness still exists and the person is declining, he can remain on hospice care. If, as sometimes happens, the disease process has slowed or stopped, and the person is no longer declining - or even doing better - he must be discharged from hospice. He can be readmitted if the disease process becomes active again.
Medicare covers all the costs of hospice care. Most private insurance companies also offer hospice benefits. If your loved one qualifies for hospice but doesn't have insurance, ask your doctor if there are any local not-for-profit hospice organizations that treat people with no payor source.
Asked if she had any special advice for family caregivers, Sandra Daoust, Care Manager at Home Care Assistance Montreal, replied immediately, "Get involved in a support group". A support group is a group of people who are going through the same type of thing you are, although of course, no two caregiving situations are exactly alike. Support group members can cheer your successes, offer words of comfort when things aren't going well and sometimes provide valuable advice about, caregiving techniques that worked for their loved one.
Finding a support group that fits into your schedule usually takes a few phone calls. A good place to start is the local chapter of any organization that addresses your loved one's illness. For instance, if your loved one has Alzheimer's or a related type of dementia, you might want to call the local chapter of the Alzheimer's Association and ask about their support group schedule.
If that doesn't help, try calling your church, a local hospital or nursing facility and ask if they are aware of any support groups for caregivers. If you can't find anything that meets your needs in your community, consider joining an online forum or chat room for caregivers.
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