17 Testimonies From Carers Looking After Family Members
For family members who are also carers, there's a wealth of demands – and a lot of rewards.
"I am just so tired."
I've been taking care of my father – he is a diabetic on dialysis, has a rare blood disorder and his back is in terrible shape after a fall – for a few months now. I never imagined that at 31 my career would have stalled and I would be taking care of a parent who is only 62. My mom passed years ago, and I helped a bit, but nothing like this. My sister, a registered nurse who lives 45 minutes away, is no help.
The only thing I can think is that I am just so tired. I'm too tired to look for a new job a lot of the time, even though I have my MBA, and a very marketable skill set. In looking for a new job I have to make sure I'm close to home.
There is part of me who appreciates what I am doing is good. But there is another part that is resentful. I feel like I'm standing still taking care of my dad's needs, and life is passing me by.
I am just so tired.
"The list is never checked off."
I have been caring for my elderly parents after caring for my husband who passed away from cancer. My mother passed away two years ago; now I take care of my dad and brother. I have a daily routine that adapts to their needs, and a list in my head that is never completely checked off. What keeps me going is faith, prayer, meditation and the belief in something greater than self.
"I don't want to remember him this way."
I care for my father four nights a week so my mom can go to her second job. He had a massive stroke and is unable to walk. As a lifelong daddy's girl, I was never really able to face how much things changed. I felt like grieving would just break me. I chose to just keep going and do what was needed to get by. It's already been three years. I'm scared if I don't force myself to just go ahead and be sad about how different my dad is, that I'll forget his advice and support, how often he showed his love for his family, and what an all-around wonderful father he was. The spin my life took is better than an alternative, but I don't want to remember him this way.
"It’s all just a learning process."
I am the carer to my fiancé, who is a Purple Heart veteran. He has a TBI (traumatic brain injury) and multiple injuries to other parts of his body that sometimes hold him back and make it so he needs someone there to take care of him. Some days are most certainly harder than others.
It's difficult sometimes. Not only do I have to put my needs on the back burner, but sometimes the needs of our relationship, because his health and well-being are more important since I'm his caregiver. We can't be your average "newly engaged/soon-to-be married" couple, but at the same time, I wouldn't change it for anything. Knowing that I care for someone makes me happy, and it's not all bad... Sometimes we turn his doctors appointments into "date days". It's all just a learning process. :)
"We are not robots."
We are not robots: We have emotions and sometimes you need to take 10 minutes if things get too much but it's not anything to be ashamed of.
"There is no way to prepare, but the learning curve is quick."
In the space of one year, I became a caregiver for my father (who was diagnosed with Alzheimer's dementia and went on thrice-weekly dialysis), my aunt (who had her own concerns along with her preparatory grief for the brother who was her life), and my husband, who survived a series of violent asthma attacks. Being a caregiver for family members means entering an entirely new world, one for which there are surprisingly few, and astoundingly many, rules, all at the same time.
I saw my father and aunt to the ends of their journeys. My husband got better. I am forever changed. There is no way to prepare, but the learning curve is quick. You do what you have to do. Sometimes, that means telling medical staff "he can't speak; talk to me" and handing over a medical proxy when your heart is beating so fast you think it's going to explode.
Sometimes, it means running into rush hour traffic because your person wheeled himself into the middle of an intersection and then forgot why and didn't know what to do next. It's recognising the sound of a body falling to the floor and bolting up from your first nap in days. It's breaking down in the dialysis unit's bathroom and pulling it back together after telling your person, for the third time that week, that their spouse isn't there because they died twenty years ago, and comforting them as their grief comes fresh and new.
It's living in two times at once, on Schrödinger's schedule – you both are and are not doing X, because it all depends on how your person is doing that day, or that minute. You develop a sense of humour that may seem cruel to people who don't understand, but you need it to get through. You learn to recognise the good days and cherish them all the more.
You'll get tired. You'll get angry. You'll put your person's needs above your own, and feel selfish when you do take time for yourself, but you'll need it. It's walking through fire, sometimes a sprint, sometimes a crawl, but knowing that you can make a difference, big or small, for someone you love when they need it most, is priceless.
"You find yourself getting lost."
I became a carer for my boyfriend, who has a chronic breathing condition that makes it difficult to do basic things. Things that couples take for granted like being able to spoon or sit through a movie were impossible for us.
The problem with caring for a significant other in this way though is that you find yourself getting lost. Our relationship became about how to keep him well and functional, about how to meet his health needs. My needs couldn't compete with his and he couldn't meet my needs for affection and any semblance of a normal life. It's almost impossible to get out of that kind of relationship because you have to admit you can't take care of them because your needs are important too. It feels selfish. You feel stuck and lonely and start to resent them.
Stepping away doesn't make me a bad person but it makes me feel like one.
"I don’t know what I would do if I was an only child."
My sister and I are caregivers for my mom who has MS and we all care for my dad who has Alzheimer's. I still get so much from these two wonderful souls but in my darker moments sometimes I feel like I have been orphaned by their illnesses, and that we've switched roles and I'm the parent and they're the children. I am so thankful to have a wonderful sibling to share the load, rely on, and commiserate with. I don't know what I would do if I was an only child.
I often have to carry, bathe and do personal grooming for my mom now and it seems like just yesterday she was cutting my nails and giving me baths and carrying me into bed. And I have to pretend to her that it doesn't make me sad. In the grand scheme of things I know I will look back on this time with them and be happy I devoted it to them, but sometimes it gets really dark, especially when I see people my age getting married, having children, and launching their careers. C'est la vie – I'm so very rich in family friends and love I really can't complain.
"It just means I need to plan for the worst and hope for the best."
I'm 15 and have been a young carer for my mum since I was eight years old. She has had a stroke and cancer. Since I have been caring for her for so long it doesn't feel strange or challenging it just means I need to plan for the worst and hope for the best. It does get tricky sometimes and yes, my social life has suffered but I love my mum and I take it in my stride. I am actually a lot more independent than a lot of people I know. To be honest, I wouldn't want to change this life cos I love my mum too much.
"What saddens me most about media portrayals of the disabled is that the cared for are passive, submissive, accepting, and grateful for help."
For the last 15 years I have been my mom's one and only caregiver. She had a catastrophic aneurysm when I was eight, the effects of which put her in a coma for months. She learned to eat, read, speak all over again, all while I was doing the same as a child. Hospitals and rehabs became like a second home to me.
She's still sharp and smart, and what saddens me most about media portrayals of the disabled and societal perceptions of being a caregiver, is that the cared-for are passive, submissive, accepting and grateful for help. My mom has lived with her semi-paralysis and extreme pain for over a decade, and yet she is still determined to complete tasks on her own.
I help her get dressed, shower, prepare meals, clean up every one of her multiple accidents through out the day, both in the kitchen and in the bathroom. It kills me to hear her scream in pain daily, and even more when her cement willpower breaks down and she cries and begs for a different life. Most days I feel completely helpless, we both do.
It is becoming so apparent to me how our world has silenced the disabled and caregivers. There are institutional support structures for parenting, for retirement, for youth, but not for those unique situations where family roles are reversed. I'm also learning that caregivers must take care of themselves just as much as they take care of their loved ones. When you have been raised to be a caregiver, the guilt that comes with spending more than five minutes on yourself, is paralysing in itself. But we have to, because at the end of the day, our health is all we have. Us caregivers of all people should know that best.
"It is my turn to care for her."
I can't say it is the easiest thing I have done but it is what needs to be done. I tell my mother all the time that she cared me for when I could not care for myself so now it is my turn to care for her. Life comes full circle whether we are ready for it or not.
"At the best of times it was aggravating and at the worst, brutal."
I was a reluctant caregiver at the best of times, but my elderly relative did not have anyone else in his life willing to step in. I thought it would be a challenging but doable effort, and a way to save on rent. At the best of times it was aggravating and at the worst, brutal. I got a front row seat to how much our society treats elders with indifference and contempt. I fear for the future when there will be so many more elderly (and so many more with dementia) and I often stay awake nights wondering who will take care of me.
I later moved my relative to a residence care facility, where he broke his hip not long after, and finally got him into a hospice where he died the following February. I would think twice about going through this again, but I was proud to have fought so hard for him at the end. He was a wonderful and kind person and he did not deserve the path he was being sent down, so I'm glad I could be in his corner.
"As a family, we don't believe in her going into sheltered or care accommodation, not as long as we can safely and effectively care for her ourselves."
My mother was diagnosed with osteoporosis in 2010, and then suffered two minor strokes in 2012 and 2014. The strokes have left her with poor vision in one eye and extremely hard of hearing. The osteoporosis has meant a gradual decline in her general mobility and an increase in continual pain. Prior to 2010, she was very independent: in 2007, for her 70th birthday, she helped build a hospital in Sierra Leone.
We don't believe in her going into sheltered or care accommodation, not as long as we can safely and effectively care for her ourselves. My siblings and I were dispersed across the country so initially my brother moved in with her. Two years ago, I did, and my other brother and sister visit roughly every six weeks to help as needed. My mother receives a state pension and a disability allowance at the lower level, and is a Blue Badge holder.
The obvious sacrifice was moving out of my own property and moving down to the South West. I used to have another job but have been her full time carer for the last 18 months. There are no more spur of the moment decisions. I can't go for a pint and a chat that turns into a session, and no overnight stays. But they pale in comparison with the things my mother's involuntarily had to sacrifice: spending time talking to friends and family, being able to travel, following a conversation and joining in fully, being the one that was giving help, rather than the one who now has to ask for it. Her independence, basically.
Being a carer means you have to be well organised. Meals and medication times are inflexible and drive when everything else happens. Besides the NHS we have called on help from Age Concern, the local social enterprise that deals with NHS hearing issues, and friends, neighbours and my mother's church members. For my well educated and financially secure family we would only ask the government that access to the different parts of the care industry my mother needs is made easier, and more widely publicised. It's often difficult to find and get to speak to the right person at the right time, although having finally made contact in general the service provided has been first rate.
"We had a lot of problems because the roles changed."
My 25-year-old brother was diagnosed with Stage 4 Hodgkin's Lymphoma in the week of my high school graduation. I became his caregiver the summer after I graduated from high school. I was 18. Instead of moving to Chicago to attend university, I stayed home to be with my family through his illness. I fed him when he was too weak to feed himself, I cleaned his throw up when he couldn't make it to the restroom, and I made him smile. All I could do was sit with him, listen to him, tell jokes, and lighten his load.
The hardest part of being his caregiver wasn't the work that I had to do or that I paused my life for him. The hardest part was watching him in pain and not being able to change anything. We had a lot of problems because the roles changed. He was a 25-year-old man, my older brother, and I am his baby sister and I had to take care of him. He fought me all the time because he missed his independence, we cried together a lot, but we were able to get past it.
He died on Friday, 27 June 2014. I regret nothing. Being a caregiver is hard both emotionally and physically hard, but it has formed who I am today.
"Don't ask a carer 'what can I do for you?' Offer something specific."
I have been a caregiver for my husband since his massive stroke in 2010 at the age of 27. He went from being the stay at home dad of our daughter for her first 20 months of life to now try to take care of himself. So many things have changed but not all for the worse.
My husband has stabilised and is able to do almost all of his own self care, even without being able to move his right side at all. I have transitioned to being 100% self-employed. Being able to take time for doctor appointments, work from bed if he is having a bad day, and know that the bills will be paid even if we spend a week in the hospital (like last year when he had to have his gall bladder removed) is amazing. The part that I wish I could change is the unknown. He could live to be 100 or he could die tonight. I don't know if he will be able to see our daughter graduate or walk her down the aisle. He still is my rock.
Sometimes, I hate the life and stress that I live. I wish that I didn't have to find someone to take care of both my daughter and my husband if I leave town for work. I am so blessed that my brother and my parents live close by, and I have an incredible support system. I am not doing this by myself and I know how lucky I am to have the love of family and friends around me.
Something that I would want to tell someone who has a carer that they love in their life is don't ask what you can do for them. There are so many things constantly going on in their minds, they won't be able to pick something out – plus, it's so hard to ask for help. Instead, offer something specific or tell them straight out. Say "I'm bringing you dinner on Thursday, would you like chicken Alfredo or Chili?" Instead of "what can I do for you?" Offering to come clean the house or help with laundry or, depending on the person needing care, take a two hour shift so they can go see a movie or have a meal they can eat warm at a restaurant by themselves without having to feed someone or prep them or fetch anything. There are so many resources in the world too. Support groups, message boards, and people who are going through this too. You are never alone.
"I miss him every day."
My partner Matt and I have been together for three years, but we have only recently realised (due to a worsening of his symptoms) that he may have a serious mental health condition. He has begun to be assessed by his local community mental health team. I have been his only support – practically, financially, and emotionally – for the last nine months. We are both 23.
I am exhausted from trying to find the confidence and the best way to explain the situation to our friends. I am sick of trying to explain why I pay for everything, why Matt doesn't have a job, why he hasn't come to the party with me, why he doesn't contact our friends. We don't have a diagnosis, so it is hard to explain the situation. Each day I feel a mixture of fear, guilt, anger, sadness, and responsibility for how Matt feels and acts. I often feel completely alone. Matt was my support. Now I rarely see that man. I know he's in there, but he's been beaten into submission. I miss him every day.
After one episode, we ended up at A&E. The mental health team were brilliant. They also contacted his Community Mental Health Team, which has sped up Matt's assessment process. The last few months have been an emotional hurricane. I try to take each day as it comes and not have unrealistic expectations. I have started to reach out for help as I know Matt and I cannot go through this alone. Matt finds it particularly upsetting that he cannot support me at the moment. He has said to me that he knows there are many people out there I could love and be happy with. He's right. The thing is, for me, it's not about 'us' anymore. It's about him. It's about him getting the support he needs so he can have the opportunity to dream and achieve and live, regardless of the brain he was born with.
I always remind myself that the bad is temporary and the good should be cherished.
"The media talks a lot about childcare, and this is similar. We have a baby monitor."
I'm a full-time carer to my mum, who has Parkinson's (for the last 22 years) and dementia (diagnosed this year). She used to be able to function but has had a rapid decline. My sister and I have been caring for her for five years, and her memory is going – she recognises me and my sister, but finds it hard to recognise others, and she's wheelchair bound. My sister and I shower her, dress her, give her medication, give her meals; It's a 24-hour job.
It's difficult. But we've been doing it for a long time and we're a good team – one of us can go on holiday at any one time, and our social lives are OK – it's like a military plan. It's more about the fact that we can't do spontaneous things; we have to plan ahead for stuff. My sister has a partner so that helps.
We receive nine hours of relief care every week, but we pay for the majority of it. We saw a neurologist recently who said he was surprised she was alive – he's seen people go into a home and die quite quickly once they were in there. Two of those days the care comes from a local agency, but once a week a carer from the Alzheimer's Society, and she's really excellent.
I don't think people realise what a tough job it is – it's a taboo subject. I feel people's perceptions need to be changed and there needs to be more positive coverage – I've had relationships break down in the past because they see what I do as a negative thing.
The media talks a lot about childcare, and this is similar. Every night we have a baby monitor on – it's not the case that our work is done once she goes to bed. I used to not tell people what I did, but I'm happy to tell them now. You see the looks on their faces, they're like: "You live with your mother," and it's more like, "Well no, she lives with me."
– Jon Henderson
Some of these testimonies have been edited for length and grammar.
Want to read more from the Carers' Issue? Shane Burcaw wrote about the hilarious and incredibly awkward realities of being cared for by loved ones. Alex Andreou described how caring for his mother gave him the best birthday he'd ever had. Tom Chivers pulled together 11 charts that show how care will evolve in the UK over the next several years. Halima Ali collected some of the secrets people caring for loved ones never tell you. People who are carers for their loved ones spoke honestly about its rewards and frustrations. Alex Taylor-Beal and Stephanie Crack talked about the change in their relationship when Alex became Stephanie's carer after she was diagnosed with multiple sclerosis in her second year of university."