Unsung heroes: Two caregivers share the joys and pains of looking after family

Ideally, family members share a close bond defined by affection, support and nurturing of one another’s potential. The bonding, however, has reasonable limits allowing each member space and room to be independent and their own person. The limits get more defined as family members—children—grow older.

But what happens when a family member, for whatever reason, becomes entirely dependent on another, for instance, due to sickness or an incapacitating accident?

What happens when a parent becomes dependent on their children, and the roles are reversed? Oftentimes, caregivers take up this role without psychological preparation for the toll caregiving can have on their lives. There is a lot of shifting dynamics in a family when one person becomes a caregiver, and therefore, it is paramount for their well-being to be given priority. DN2 Parenting had a conversation with three women who have found themselves in unchartered waters, taking care of people who once took care of them. 

The childhood memories I have about my mother is a tall and well-built, hardworking woman. This is how I grew up seeing her, and as the only girl in a family of seven children, she was my first role model. I remember her as this superwoman who picked coffee all day, then carried a sack load on her back to the factory, and later came home to tend to her family.

Back then, if you were to ask me if I knew my mother, I would have answered yes, without a doubt. But I have come to realise, my perception of her was flawed. I only thought of her as our mum, and never as a woman of her own. I have come to realise that despite being the superwoman I thought her to be, she too has her flaws and struggles.

Five years ago, we had a family gathering at her place upcountry. At the time, she was living alone, and given her age, 91 at the time, we decided it was good to get her a house help to keep her company. But my mother being the stubbornly independent woman she is was having none of it. I suggested that she moves in with me, as her only daughter, it made sense, but she refused that as well.

Luckily not long after, she came to visit my home in Thika and based on a comment she made, I knew she was open to my suggestion. When she started living with me, I was excited beyond measure. Having gone to a boarding secondary school, then college, and then left the nest shortly after, I realised I had not spent a lot of my adult life with my mum. This was my moment to finally do that, as well as share her sunset years together.

I was excited about seeing her every day, my children and grandchildren hanging out with her. I enjoyed asking her questions about her life which I couldn’t have dared to ask when I was younger and under her roof. I was learning of a whole different person, a young woman who was once arrested while coming home from a disco, and other intimate stories about her life, all news to me.

Before long, however, I also started seeing another side to our shared living that I had not anticipated. Despite being healthy and having no major physical issues, she still looked very frail and her posture was even changing. I found myself worrying constantly, as the realisation came to me that there were only a few years of her life left. It is a pill I was not ready to swallow. I remember recently when the Queen of England passed away, someone made an innocent comment about the year she was born, and that being the same year as my mother, there was a stark comparison in my mind.

It also dawned on me that our lifestyles were very different. I started feeling like she was intruding into my personal space, and having to balance her needs, my social life and work became quite a challenge. Her cognitive abilities were also declining and I found myself having to repeat things over and over to her again. I would find myself raising my voice at her, then end up feeling guilty, wondering whether to apologise.

There was also a concern for her privacy. For instance, when she started living with me she could at least manage to wash, but there is that worry; what if she slips in the bathroom? The solution was to assist her to take a bath, but the idea of seeing my mother naked and frail was very disturbing. I had to find a house help to help me with looking after her. I had to find someone who would keep up with her difficult moments when she raised her voice towards us or threw tantrums.

Having extra help has been a point of relief for me, although we are still facing some challenges in this living arrangement with my mother. Despite my insistence for her to just sit back and let us take care of her, she feels that we are still the children. She worries about us even though her last-born child is nearly 50 years old. She makes me call everyone just so she knows they are okay and well taken care of. This forces me to be a ‘mother’ to my siblings.

Some days, mum will refuse to eat, and then say we are not feeding her. She will refuse to have her clothes cleaned by anyone else, she wants to bathe herself, yet she does not have the strength to. And if I try to insist, she does not mince her words in scolding me. To be honest, it is quite exhausting, and I sometimes find myself taking it out on my children which is unfair.

I was a nurse and a caregiver, and right now I am a practising family counsellor. I thought my background and experience could help me navigate through the stresses of caregiving, but I first realised when it is your own family, it is very different. I have also found it difficult to ask for help from my siblings, after all, no one asked me to take our mother in, so I volunteered.

One of my biggest support systems has been my own children as well as my grandchildren. I also have a friend who is living with her mother, and we talk extensively and encourage each other. I also started seeing a therapist to help me navigate through my emotions so that I can stop taking it out on other people.

I started living with my mother in 2016 after she suffered a stroke. She had just come back home from India where several of my siblings and I had stayed with her for three weeks while she received treatment, and due to certain family dynamics, it was settled that I should be the one to live with and care for her. Of course, I accepted this gladly, she is my mother and I love her very much, and to be able to take care of her in her time of need was a blessing.

Earlier in 2014, she had suffered another minor stroke and had momentarily lived with my sister who has a background in nursing. Therefore, by the time our mother was moving in, my sister had given me a few tips about caregiving, so I felt ready and prepared.

I am raising a teenage daughter who has cerebral palsy, and I also have to work, so I thought it wise to find a nurse aide to help at home. My mother requires full-time aid as she has mobility issues, as well as incontinence. This was my first hurdle, as when I started calling around looking for someone, they quoted charges that were unrealistic to me. The first person I spoke to quoted Sh2,500 a day and gave me an option of a monthly salary of about 75,000. As finding a nurse aide proved difficult, I eventually settled on finding a house help and then training her on how to care for my mother.

One thing I learnt very fast when I became a caregiver is to take on the difficult times and the hurdles as lessons.

Despite all the preparations I thought I had done, I had not anticipated just how much my own personal life would change. We are 12 children in my family and she is our mother, so whenever they want to visit, I cannot deny them that. There is also a constant stream of visitors and well-wishers popping in. I remember one time my daughter asked me if it was at all possible to have any privacy at home. She could not even watch her favourite shows on television anymore.

I also came to realise that my perception of what I thought life for my mother would be like was wrong. It had not occurred to me that despite her illness and challenges, her life had not automatically stopped. She still wanted to have a social life, visit her children, and go to church; and when she could no longer do all of the things she wanted, she felt frustrated and perhaps a little lonely. Life without much activity can be quite monotonous. Being the one closest to her, she of course takes out these feelings on me, and the remarks can be quite harsh and scathing.

Balancing between expectations can also be quite challenging. My mother has her expectations of how she feels she should be taken care of. The family has their own expectations of me, then there are my own expectations. For instance, caregiving takes a toll on your personal life. A partner feels like you have too much ‘baggage’, and you cannot always be there for your friends as you have other more urgent responsibilities. Having someone or friends who are fully able to grasp this and accommodate you nonetheless is not always possible.

The mental well-being of my mother is also a concern. I try to be strong for her and me both, but there are days when it can get overwhelming. A few months ago, for instance, she woke up worried and stressed. She thought she had lost all her children, and we had to call all of them just to put her mind at ease. While speaking to my siblings, she sounded like she was bidding them goodbye forever. I understood the cause of her anxiety is learning that her friends and peers, some of whom had very minor health issues had passed away. But despite knowing and understanding this, seeing her go through that is not easy.

Another lesson for me has been the difference between taking care of someone who is ill for a short period and who gets better with time, versus taking care of someone whose condition does not change much. I have to wake up every day and find the strength to keep going. As a Christian, I believe there are blessings to be earned in the work I do, that is what keeps pushing me through.

I also have a very nice doctor who never hesitates to offer support and advice on how to take care of my mother, and I believe this is very important for caregivers. With time I have also come to network with other people and groups with shared similar experiences, who can help on days when I need care myself.

The first thing to note is that when one family member becomes a caregiver, there will be a shift in family dynamics, and it is important for everyone who might be affected to be mentally prepared. For instance, if someone has a romantic partner, it is important to know that their love life might experience some adjustments. Preparation will also ensure the distribution of responsibilities so that even if one person is the primary caregiver, they do not end up doing everything, and they also get time to themselves.

In terms of processing emotions, it is paramount for caregivers to be well informed about the conditions of the patients or people they are looking after, and what symptoms are to be expected in the short-term and in the long-term so that they are psychologically prepared. They also need a lot of validation and reassurance that the work they are doing is very important and noble. Caregivers also need to be walked through how to process grief and loss, as even though there is no death, they are dealing with the lost abilities of the care recipient. They should also find time to do the things they love, and even though the frequency might reduce, it is important to maintain a balance.

Caregivers can also experience guilt and it is important for them to understand that it is normal. For instance, when dealing with someone who has dementia and you find having to repeat yourself over and over, one might find themselves raising their voice, and then end up feeling guilty. They can also feel guilty for being happy or enjoying their lives despite looking after someone who is not able to share in their joy.

Another cause of guilt can also be fatigue. When a caregiver feels tired of their responsibilities, they might feel like they are failing their family or the one they are looking after. However, fatigue is to be expected as their work can be physically and emotionally draining. A good way to deal with this is through journaling so that they have a constant reminder and good documentation of the work they are doing, and its importance.

Delegation of roles and duties can also help in dealing with fatigue, and this is critical when dealing with a life-long condition, for instance, terminal illnesses, and severe autism, among others. This means that the burden is not left on one person as it happens in a lot of cases, and ensures a family has a long-term plan that includes everyone. For instance, if there is a need for regular physical exercises or hospital visits, a family can have a schedule for who does what and when.

It is also important for the family as a whole to have often discussions. For instance, when one sibling is looking after the parent, the other siblings might get jealous because of the time spent together. Conflicts may even arise within the family, and having a conflict resolution mechanism is important. You do not have to talk about your family issues with everyone, but you can find a close family friend to act as a mediator.

To ease the financial burden on the caregiver, it is important for family members to also have a fair distribution of costs incurred. Families can also find out available relief from the government and other institutions that can help ease the burden on them.

Taking care of caregivers is critical, not only for their well-being but also for the care recipients. If a caregiver is neglected, they can fall ill physically, or fall into depression, which then adds to the burden instead of lightening it. Whether it is someone’s child, sibling or parent, it is important for other family members and even friends to be empathic and supportive and to actually understand that by caregiving, one runs the risk of becoming dependent if neglected. Even when executed by a designated caregiver, it should never be a one-person journey and responsibility.

Camilla Edalia, Psychologist – Endeleo Counselling Therapy