Caring for a loved one can be a fulfilling experience. The prospect of being the one that another individual looks up to for partial or total support can be rewarding. However after a while the novelty wears off. Suddenly the harsh reality about the unending nature of the now burdening role hits you. It is made worse especially when the loved one shows no signs of improvement. It can be an endless pull on an individual.
The sad part is that carers can hardly confront these burdensome feelings without an equal weight of guilt. Pangs of guilt weigh them down each time they confronts their feelings of internal frustration.
“Why should I feel this way?”, they think.
“I must be a selfish person after all I am not the one who is poorly”.
At other times another line of thought springs up;
“I really have no right to feel this way because I am not the one who is sick”.
Most times these feelings keep cropping up in their consciousness leaving them emotionally exhausted. It can feel like being carers means that their needs cease to matter. As though the needs of carers should take a nose dive in terms of relevance. I have been privileged to meet many carers who have expressed these same feelings at different times. In my experience, I have come to appreciate that although these feelings are common they are the least expressed. Carers are each alienated in their individual worlds and the mix of individual experiences as a result of this role, helps them find ways to suppress these feelings.
On a short-term basis, it may be easy to bury those feelings somewhere within the carer until the need for providing care for the loved one seizes. This works only in instances where the loved ones get better and everyone lives happily ever after.
Some of us are living our new lives as carers and each time we stay hopeful about having such outcomes, a new symptom resurfaces. We are then snapped back to the reality of the long-term nature of our roles in the lives of our loved ones.
Sincerely, on the outside, and honestly most days, we do not complain. We carry on happily. Our abnormal lives become normal for us. In our respective homes we raised the bar for “normal”by the number of activities we become able to juggle more easily. Some of us complete record-breaking number of tasks daily. This in itself can produces a sense of fulfilment.
On darker days, we remember ourselves. We are jolted back to the reality of the implication of the sacrifices we have had to make in order to be there for our loved ones. I call those dark days because for me, on those days all I can think of are the things I have missed out on in my life by being here for my son. The things I wish I could do, the things that continue to elude me. On those days I feel overwhelmed by the fact that I cannot get back out there to do something for me. I feel so aware that my dreams are not just impossible but also not feasible.
At times meeting an old friend can remind us of things we used to do. Such meetings make us unconsciously compare the success and progress of friends and family with all our inabilities. This thought process tends to produce sadness… Somewhat of a sinking feeling. A yearning for a life we cannot have for as long as we remain carers for our children or loved ones.
It’s important to pull ourselves out of these lines of thought. We can learn to focus on why our current roles as parents carers are also fulfilling. For starters, who else will care better for your loved one? Isn’t it a privilege that you are available to do so? You could have been unable to for many reasons and still felt unhappy. What if you became unwell, will you not expect another loved one to care for you? There’s no use beating yourself up about being the one stuck with caring for your loved one when you can enjoy your ability to be there for them. You can use the opportunity to show that you care and to pour out your love into them.
It is helpful to think about the bigger picture of your role as a parent carer. It’s all about finding that point where your needs and that of your loved one are adequately met. Your needs matter too and must never be overlooked. You will find a way to meet your needs while accommodating the needs of your child or loved one who depends totally on you.
One of the reasons I find that parents carers feel very frustrated in their new role is because they miss their old lives. They miss being able to do things in the ways they were used to for the became parents carers. Suddenly their lives are not theirs any more. They live for their children and lose themselves in doing so. They lose control of their time, associations and social networks, hobbies and activities that or add to the substance of their lives.
All those things give a carers life more purpose. It makes them feel like they make a difference every day. Being able to control when and how these activities take place give the person a sense of control and a feeling of responsibility. Some of these activities pay the bills, provide resources for acquiring things or adding to the substance of that person’s life.
In reality these activities give substance to one’s life not because of the activities themselves but because of what we are able to achieve as a result of performing them. Your job for example can give you a sense of purpose, make you feel responsible, help you feel in control of your life only because you let it. It’s all down to you. You will agree that some people find the same job that you hold dear to be their problem. Some might hate the job and lack any sense of purpose or responsibility for the same job. What I’m trying to say is that if you could make your old job work for you, then since we have the same “you” in this role as a parent carer, you can make this work too. All you have to do is change the way you see it. Change the way you let it affect you.
Becoming a parent carer might mean giving up on all these things. Like everything else that is stopped abruptly it is important that parent carers learn to give themselves time to adjust to their new role. Unlike other roles taking up by people, they are given notice, training and go through interview processes where their skill sets are checked and matched against the proposed roles before selection. Parents carers do not have this luxury and find themselves thrown into the role without any notice or handbooks to guide them through.
The brain tends to stick with patterns and things that it used to. It finds it safe. Why learn something new when you can have the old one? This may be the main resistance you face as a parent carer. Your constant yearning for your old life, your old job, your old hobbies might be what hinders you from appreciating all the work that you can do with your new role.
The old patterns of living create a stable habit for you. You attain such stability by working and cultivating those habits over time. Like with most habits, your old activities and lifestyle (not being an exception), you develop a sense of attachment to familiar activity patterns. Therefore as soon as you have to give them up, it will feel like an important part of you is gone. Lost. This feeling is normal and should not alarm you.
As you begin to embrace your role as a parent carer, you give yourself a chance to learn a new way of living with the illness of your child or loved one.
Now here’s what you can do to help these the feeling of loss.
- You can still wake up every day with a sense of purpose like you did in the past.
- You can resolve to do the best job every day
- You can make taking care of your child or loved one your priority by taking your role seriously enough to attack it like a job
- You can organise your day by writing down a to-do list where you write down all the activities you have to perform for the day taking note of appointments, medications, feeding times and so on
- You can prioritise tasks to help conserve your energy by leaving the less urgent tasks for later thereby giving yourself a bit of time to rest in between.
You will feel a renewed sense of control. The activities you perform as a parent carer will not just go on, but you will also be able to control what goes on in each day. You might even be able to add some leisure activities to spice up your day and keep you feeling rejuvenated.
There are some parts of your old life that you may not be able to replicate. For example if you have given up a good job or reduced your hours of work to care for your sick child or loved one you will have to accept that your finances will be less. On a positive note, so will some of your expenses. If you stay calm you may find areas where you can adjust your spending to accommodate your dwindling finances.
It may be possible to get financial help for your family depending on your circumstance. Do not be afraid or embarrassed about asking for help. In the UK, the Citizens’ Advice Bureau is a good place to start. They are able to provide advice and signpost you to the various forms of financial help you might be able to access.
We need to be kinder to ourselves. In life we get to different points and have to keep taking stock. We must do what we have to do. Sometimes sacrifices are made. Some are made for us and some we make for others. Money, career, material possessions and so on do not solve everything. However, love solves most things. Sometimes we need to release our love and let it reign.
The smile on the face of the loved one after a day spent loving and caring for them cannot be bought. It is earned. You can earn it by being there and sharing their challenges with them. By standing strong and knowing that what you’re doing is the right thing you earn it too.
Do not sacrifice your time and life to care for another person if you genuinely do not want to. It will not be worth it. The desire to sacrifice in this way has to come from within for it to be fulfilling. It is not a very easy choice. And it is not a choice for everyone. You must find a place within to do it for another. Many become carers without warning. It is my hope that by knowing that the emotions you feel are normal it will help you find your own new normal.
Caring is a special task not many are privileged to experience it. It certainly helps you rediscover yourself in ways you would never have imagined possible. If you don’t worry too much about the future and just leave each day as his see it, one day you will look back at how far you have come with your loved one. I hope that when you do, it will be with a smile at what you accomplished.
No parent carer is perfect and all have their fair share of gloomy days. By adjusting the mindset one can find that the gloomy days may start becoming fewer. A positive and selfless approach helps. Putting yourself constantly in your child or loved one’s position can help you reinforce your resolve to be there always. After all it is exactly what we will demand if the reverse where to be the case.
Have you ever felt lonely as the carer?
Thank you for reading.
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.
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