Caring for a loved one

As I sit here watching the rain fall, I have been caring for seven years.  Well, April 2021 will be 7 years if I want to be exact.

On Wednesday 24 April 2013, my beloved husband had an accident that led to a fractured coccyx. From then on, my life changed.  I nursed him while I worked full time. I nursed him while I was recovering from my own cancer surgery. I nursed him through everyday life. I nursed him while he struggled with his recovery, both physically and mentally.

Then, just as he got back to work in late December 2015, he was diagnosed with an incurable auto-immune disease. That auto-immune disease (Myasthenia Gravis) led to so many complications and hospital trips. Fractures of bones, osteoporosis, septicaemia., chemotherapy, nerve injections, intravenous immunoglobulin treatment, plasmapheresis treatment, pneumonia, ICU stays and much more.

In 2017, when the load was too much, I quit my job. I nursed him full time one on one 24/7. For every negative that we had dealt with and were still dealing with throughout his illness, they were far outweighed by the positive, in that we were together all the time until his sad death in 2019. I hear you ask yourselves – What am I doing now? Exactly the same thing!  After his death, I went straight into caring for my mum who has a life limiting illness.

So, what happens when you’re a carer?

Is it as easy as just doing what someone wants when they want it? Is it a 9-5 job? Do you get weekends and public holidays off? Do you get to take a break and go out for the night? Can you sit down with a glass of wine and ‘switch off’? Can you say to your loved one “I’m not on duty today, its my day off”? The answer to every single one of those questions is no.

Caring for a loved one should not be an expectation. Caring for a loved one is not for everyone. There you go, Ive said it. I bet that will put a spanner in the works!! No matter who that loved one is, whether it be wife, husband, son, daughter, sister, whoever. Sometimes you just can’t do it. Sometimes it is out of your comfort zone.  You know what? That’s ok to say so. Its ok to say, “No I can’t do it”. It doesn’t make you any worse or any better a person. If you have the ability to say you can’t do it, it makes you the right person. If you can admit it is not for you, it makes you the best person.

Caring for a loved one is a traumatic and difficult experience, whether you are ready for it or not. Whether you have the relevant knowledge to do it or not. Whether you feel you should do it or not.  Its traumatic. I can say that with the experience of seven years caring and thirty years of nursing behind me. Its traumatic! But why, I hear you ask?

Heres a few reasons.

  • Its 24/7. You don’t get to go to bed at night and get a good night’s sleep. You don’t get to sit comfortably and read a book undisturbed.
  • Its demanding. There is no way round that. There is always something to do. There is always something that needs doing. There will always be something that someone wants.
  • There may be numerous hospital trips which are exhausting if you are loading/unloading a wheelchair and person into a car.
  • Potential financial hardship. If you are no longer able to work to support the family.
  • Potential or actual loss of education possibilities.
  • Social isolation from your friends.
  • Social isolation from your family members.
  • Lack of freedom and spontaneity in life.
  • It can be emotionally draining as well as physically draining.
  • Its easier to ignore your own health issues as a carer, when you’re focused on someone else.
  • Chronic tiredness. Sometimes it can be one day off the carer is looking for. The problem is, that day comes with an attachment of guilt for leaving your loved one.
  • Chronic stress – the mental stress from looking after a loved one is monumental.

So how do you deal with this? Speaking from experience….here is what I did.

  • The 24/7 care is something I learned to live with very quickly. There is no choice with that part!
  • Demanding aspects. This is something that may vary dependant on who you are looking after. It can also depend on how long that person has been sick and the sick persons expectations of you as the carer. If these expectations are different to what can be provided, then a conversation needs to be had so that a compromise can be reached.
  • Numerous hospital trips is something that you have to learn to manage. When I was taking my husband for appointments, we tried to get as many things done within the day. Sometimes we would use 2 days for appointments and stay in a hotel in between. While it was tiring for him at times, it used to give us a night away from home.
  • Financial hardship – We simply rejigged everything. It was that simple.
  • Education possibilities. This was not an issue for me as I found work that I could do online to learn new skills.
  • Social isolation. This is a tough one. Both of us, on many occasions, had to cancel things at the last minute due to his illness. We had to cancel nights with friends. Nights with each other and nights with family. We even ended up missing a concert and a night in a hotel as he was taken into hospital.
  • Lack of freedom and spontaneity. There is no way around this, and it goes hand in hand with social isolation. Planning everything goes out of the window. That’s the way the lifestyle changes.
  • Emotionally and physically draining. As much as anyone and everyone says, I know how you feel…until they have walked a mile in your shoes, they really don’t. Every caring job is different. Every patient or loved one is different and every reaction is different. Nursing someone as a registered nurse is extremely different to nursing someone that you cannot leave at the end of the shift for a break. Again, speaking from experience.
  • Not looking after your own health as a carer is a natural progression. You forget yourself and focus on your loved one. They are more important than anything. I had to deal with several health issues for myself, including cancer, when my husband had issues.
  • Chronic tiredness and stress come from everything else. Unless you get a chance for respite, there is no way through that. By the end of my husband’s life, I was functioning on autopilot for a while. Eat, sleep, hospital visits, walk the dog and repeat. It’s the nature of the beast!

Caring for a loved one is down to ability and situation. If you are able to and your situation allows, it is a beautiful thing to be able to do it.  If your situation dictates you must work, or your own health is telling you that you cannot do it, listen to what your body is telling you.

There is support. Respite, carers, nurses, family, friends, nursing homes, respite centres, hospices and more. It’s all about putting the right package together to meet needs.

If you are one of the millions caring for loved ones right now, no matter what you think you are, you are a hero. It takes a special person and you are that one.