We all have the best intentions when taking on the role of caregiver for a loved one facing advanced illness. In many ways it is a gift we can give to them, one that demonstrates our compassion, love, concern, and connection. It also lets us, as caregivers, feel that we have some sense of control, that we took on an active role and did our part. And though we may try very hard to be superwoman or superman, in reality caring for someone facing a life-limiting illness will not be easy. But you can prepare yourself for this important role by considering issues you will face and discovering ways to keep everything in balance. Caring for yourself will help you care better for the one you love.
An honest assessment of all your daily demands will help you set caregiving goals you can actually maintain. Between the demands of family and work alone, you simply won’t be able to be everything for everybody. And although it may seem that your loved one’s needs are more important than the needs of your home, spouse, or job, it is crucial to maintain some balance.
It is important to be realistic about your daily level of involvement when caring for your loved one. You don’t want to neglect your family or put your work in jeopardy. Not to mention that additional stress could begin to take its toll on you personally. It is understandable to want to be by your loved one’s side everyday and personally provide for every need, but it is important to maintain your day-to-day life as well.
Scheduling that works for both you and your loved one will be a vital part of planning for long-term care. While it may seem vital for you to be with them for every doctor appointment consider letting friends, other members of the family, and church members take your place when you need them to.
Even if you live with the one in need of your care, set schedules for regular time apart. This will help you regain your perspective and make you better at caring for them when you are together. It will also give your loved one time to speak to others, share feelings and emotions they may not be able to share with you, and allow them to feel less of a constant burden. Remember, they may need interactions with others as well.
In the beginning of long-term care of a loved one, be conservative. You can always increase the frequency and/or length of visits if you find that you or your loved one needs more time together. You don’t want to start out with an overwhelming amount of time and attention, and most likely neither does your loved one. Start off slowly, and determine any changes needed as you go. You can’t do everything, but you can do what matters most: give the loving attention that your loved one needs.
Although it can be difficult to ask for help, and just as difficult to accept offers, it is critical to ask for help when you need it. Learning when to ask can be difficult also, since women often tend to take on too much and give too much of themselves. Likewise, now is the time to learn when to say ‘no’. Eventually, the need will arise for you to say ‘no’, to a request made by your loved one, or even another family member. You simply can’t do everything and saying ‘no’ to what you consider to be less important will allow you to better handle the things that you find more important. If saying ‘no’ has always been difficult for you, try practicing in front of the mirror, just begin getting the word out. Then find a solution to the problem, a solution that doesn’t involve you, your time, mind, and resources. Finding other solutions will help you say ‘no’ without feeling guilty something went undone.
Sticking to the plan can be hard. And it is often made more difficult by loved ones who may question you or criticize you for not ‘doing more.’ It is easy for others to look from the outside in and have no real clue about the difficulties and demands of the caregiving role. Don’t be influenced by what others say or how they feel unless they are directly involved in your loved one’s care and their concerns are relevant.
The care you provide for a loved one may become their emotional equivalent of love and care, a sign that they are a priority in your life. And while it will help if you understand this, remember it is really about being the best you can be in this often new and unexpected role. And that means staying balanced. Take comfort in knowing you are in fact doing your best, don’t let the impressions of others or feelings of guilt throw off the balance that you need or lose your perspective.
In the end, embarking on the role of caregiver will be a journey that brings you joy and peace. You will capture memories you can take comfort in, reflect on the time it gave you together and gain a sense that you provided something special to someone you love.