Caregiving for a loved one over a long period of time can be challenging. It is even more so when you are on your own. This month, Elder Voice focuses on issues around being a sole caregiver.
Sole caregivers often tell us that they have a feeling of aloneness. Even when they have a good support system–a counsellor, an actual support group, or friends who have been through the same thing–talking with someone who is not involved is not the same because it is not their husband, wife, or parent.
The relationship that sole caregiver family members have with the person they are caring for is unique. There is a greater intensity which may be either more stormy or more special. There is often also a unique closeness. For example, a mother with only one daughter has a relationship that is, for better or worse, more intense than if she were to have three children. When things are good between them it can be great.But when conflict arises out of a difficult decision that makes her mother angry or upset it can be much more stressful for the daughter. The hostility can make her back off and give in. The fear is that the relationship will be “broken” or get so strongly negative it will become intolerable.
But it’s not just the relationship to the person under care that creates challenges: it’s also the burden of being the only decision-maker for that care.There are no right or wrong answers and no assured outcomes from decisions that caregivers have to make. What is best for the person being cared for is often a matter of opinion. What was good for one person is not always right for another. Moreover there are frequently both positive and negative aspects to any decision. Because they have to make the final decision on their own, sole caregivers often find they are second guessing themselves When difficulties arise out of those decisions, then they are left with the burden of knowing that they made that decision.
After the relationship and the responsibility for decisions, there is a third aspect of sole caregiving that is unique– having responsibility for all of the tasks.Even if the caregiver does not actually do everything, they are the ones who are managing the care system. They often do not see themselves as having the option of taking a break. When an issue arises in their own life, such as with their health, with their children or spouse or if they simply feel exhausted or overwhelmed, they have to make a choice. They think they are being selfish when they choose to meet their needs or those of their family before the needs of the person they are caring for.They have a sense of not being able to win.
Sole sons or daughters tell us often how difficult it is for them to go out of town for work or a holiday. Many pass over promotions if it would mean they have to move out of town. They are afraid of what will happen when they are away. One daughter told us, “I could never forgive myself if Dad passed away in the nursing home and I was away on holiday.” The result was that she had not been away for more than a weekend in over six years.
There are a few way to make being a sole caregiver easier. One is to give yourself permission to ask for (or hire) help and then use it. That means accepting that you cannot do everything on your own. There is excellent help from warm and caring people available from home care agencies and a myriad of other services. Over time when you see things are going well, you can come to feel confident enough to let go of the anxiety and self doubt. Diamond Geriatrics Care Managers can help you find and connect to the services you need and and can serve as the independent monitor so you can be confident in how those services are provided.
The second thing you can do is to learn all you can about the condition your loved one has, the course it can take, the options for dealing with it, and the help available before making a decision. One of our clients whose wife had advanced Alzheimer’s came to us after meeting with their family doctor and the hospital social worker as well as attending a support group. He wanted to make sure he had really done all he could and explored all options before he made the decision to have his wife placed in care.
We sometimes recommend that caregivers step back and ask themselves what they would say to someone else who is in their shoes–what they would suggest to that person, how they would support them. Then we ask them if they would be willing to take that same advice they would give someone else. We are often more forgiving of others than we are towards ourselves. Other things that can help are to keep a diary of journal of what you have done, and to make a cost/benefit chart or a flow chart so you have in front of you a rational plan or options, minus the emotions that may be interfering.
Rational approaches will always entail doing some emotional work at the same time. They require you to be able to be good to yourself and value yourself, set limits for yourself, and be compassionately assertive. Understand that the decision making involved in being a caregiver, and caregiving itself, is a process that brings up strong emotions, not just guilt but also grief. These can cause all sorts of negative voices in your head that can erode your confidence making decision making and care more difficult. We urge you to avail yourself of the help that is available such as from a support group, from online forums, or a Diamond Geriatrics Counsellor/Case Manager. It may not be the same as having someone share the responsibility, but it can help. Just because you are a sole caregiver, you do not need to be alone in the storm.
Diamond Geriatrics is a Care Management, counselling, and consulting company based in Vancouver, BC. Established in 1995, we are Western Canada’s oldest eldercare consulting company. Call us at 604-874-7764 or visit our website: www.DiamondGeriatrics.com