Caregivers should take note of two studies recently released by the Canadian Institute for Health Information.One of those studies, “Supporting Informal Caregivers-The Heart of Home Care”, looked at more than 130,000 seniors (age 65 and older) who received publicly funded care at home in 2007-2008. Almost all of those also relied on close family–a spouse or a child–as well as the publicly provided/funded care to be able to remain home.
The study found that one out of six caregivers reported experiencing stress. Particularly significant were the figures which showed that the odds of having a distressed caregiver were two and a half times greater for seniors receiving 21 or more hours of informal care weekly, compared with those receiving 10 hours or less. This clearly indicates that as time spent on caregiving increases, caregiver stress increases.
Caregiver stress also influenced by the senior’s condition. For instance, stress increased when the senior had depression, was aggressive, or if they were cognitively impaired from a dementia type illness (as opposed to disabled from a physical illness or event).
These findings give caregivers and those working with them some significant direction for actions. Of primary importance, it tells us that caregivers must be prepared. They need to:
- learn effective skills for dealing with cognitive problems, such as forgetfulness, confusion, repetition, and anxiety.
- recognize the signs of depression in the person they are taking care of before it becomes a major problem.
- learn skills to minimize the likelihood of aggressive behaviour and to deal with it effectively if and when it does occur.
- learn the signs of burnout.
- be able to set limits on their involvement.
- be aware of and utilize resources and supports.
Long term caregiver stress is a warning that changes must be made. Not only can it lead to burnout, it can result in alcohol abuse, drug (including prescription drug)abuse, and verbal or physical abuse of the elder. At the very least it can transform loving relationships into ones that are characterized by anger and resentment. Children can become distant emotionally, marriages can be put at risk.
Caregiving can have many positive outcomes and benefits for everyone involved. Take the time to understand the challenges and remedies in advance to ensure the experience is as positive and productive as possible. If you think caregiving may be in your future, these lists may help you with planning:
Tips for Long Term Caregiving
Caregiving is a process which can last for many years. It may have seemed temporary at first, for example, helping a senior after they have fractured a hip. It may also develop slowly as parents become frail and you almost don’t realize what is happening. Either way, at some point, caregivers may suddenly realize they feel overwhelmed with the tasks and responsibilities. But by that point, it may be difficult to start setting some limits on the time spent and tasks you are helping with.
Without setting limits and faced with the increasing needs of a frail senior with a progressive disease, Caregivers may begin to think “there is no way out,” or “this is never going to end,” or “I will never have a rest.” These thoughts may bring on the feelings of sadness, frustration, hopelessness and fear which cause burnout.
Setting limits means choosing what tasks you will help with, which ones you will not do, how much time you are able to spend on caregiving, and then communicating these limits when you must. It can mean having to learn to say “no.”‘ To do this, you must be able to recognize and admit to yourself when demands are becoming too great and you are doing too much.
What makes limit setting hard? For many people, it is a cultural taboo–we do not say “no” to our elders. For some, it is guilt. For some it is fear. For some, it is the continuation of a long history of family dynamics in which they, and the rest of the family, are playing the roles they have always played. Regardless of the reasons,it can be hard to set limits on your parents or spouse.
You may have to work at learning to limit your involvement. Start off by asking yourself what you are afraid of if you set limits? What will happen to you if you say “no,” and stick to it? Then ask yourself what is so bad about that ? And then, what is so bad about that? Repeat this process with a friend, who will keep asking you, until you get to the bottom, to find out what your real fear is.
Saying no can take practice. Role play doing so with a friend until you become able to do it comfortably.
If you have siblings or other close relatives, have a family meeting to discuss caregiving tasks. Make a list and decide who will do what, and develop a solid method of ongoing communication, by phone, email or an online programme such as The Care Tools. If other family members are not able or willing to help, it is even more important for you to be able to set your own limits and not try to do everything.
As you think about setting limits, consider also your own immediate family. How might they react when your increasing responsibilities decrease the time you have available to spend with them? Keep in mind that spouses and children often feel abandoned when their partner or parent’s time becomes significantly devoted to caregiving.
Talk openly with your parents about the limits you wish to set. Be specific. How often are you willing to go over to your parents house per week? For how many hours? What tasks are you willing to do.
As you are discussing what you are able to do to help, present your parents with some alternatives for what you are doing. For example a plan might include home support workers, a live in caregiver, assisted living, a nursing home, using taxis, going to support groups, adult day centres, getting involved in recreation centre and more Let the person needing care know that it is up to them to choose, but that there are choices to be made. They may resist the changes at first, but gradually will become used to the new situation.
Adults have the right to live at risk, even when they are 80 or 90 years old. If your parents choose not to make changes or take advantage of other resources, and you area unable to provide for what they need, that is their right. Your task is then to find a way to handle your anxiety and maintain your limits in a way that does not impact on their rights and freedoms.
If someone is not capable of understanding risks, you will have to start making decisions for them. To do this, you may have to call in the supports that are available in the community such as a physician or the health authority.
Making decisions about setting limits and other aspects of caregiving can be difficult and emotionally stressful. Diamond Geriatrics can help you decide what to do, what to say, and how to make it happen. You and your family do not need to be alone in the process. We have Certified Clinical Counsellors, Social Workers , and Nurses who can help you with limit setting, the emotions around decision making, planning care, and obtaining practical knowledge of local resources and seniors housing.
