Myelopathy: A Caregivers Perspective

Hi everyone and welcome to my first blog!

My name is Kevin and I am a moderator for the Myelopathy Caregivers Support Group on Facebook. So naturally I thought that my blog should focus on Myelopathy, but from a caregivers perspective.

If you are a caregiver for a loved one with Myelopathy, chances are you didn’t expect to be in this position. Just like your loved one, you are also responsible for educating yourself about their symptoms and the progression of this condition. Attending appointments, dealing with medications, and of course offering constant love, support and understanding. You may also be doing this while still working and attending to the tasks that daily family life throws at you.

That’s a lot of pressure placed on your shoulders. And juggling all of these responsibilities can put you at an increased risk of your own health problems, such as stress, depression and even burn-out.

You don’t have to be a medical expert or a superhero to be a good caregiver. And with some help and support, you can provide loving and effective care without losing yourself in the process. And remember: you have to learn how to be your own caregiver to be a better carer for your loved one.

Below are some tips for caregivers:

  • Learn as much as you can about the condition

    That way you can prepare yourself for what to expect in terms of symptoms and how you can be of best help should the changes occur.
  • Encourage independence in daily tasks

    Resist the urge to do everything for your loved one. No one wants to feel dependent and powerless. Allow them the time to complete daily activities that they can do, in their own time, to support their independence. And their confidence.
  • Set realistic goals together

    Having Myelopathy does not mean your loved one has to give up on their dreams and passions. By setting attainable goals you are setting them up for success.
  • Maintain respect

    No one likes to feel patronised.
  • Build a support network

    It’s impossible to be everything for one person. If you can, enlist the help of other family members. Sharing responsibilities allows families to be families.
  • Accept your feelings

    Being a caregiver can trigger a range of uncomfortable emotions. These could be anger, fear, resentment, guilt, hopelessness and grief. Having these feelings doesn’t mean you are a terrible person who doesn’t care. It means you are human.
  • Stay social

    Don’t put your life on hold. Continue to see your friends or pursue your passions. Not only will you feel healthier and happier, but you’ll most likely feel less resentful too.

And finally…

  • If you give help, get help

    Did you know that therapists have therapists? There is nothing more valuable than understanding that you are not alone. Whether it’s talking to a professional, venting to a trusted friend or joining a support group. In the same way as therapists, carers need carers sometimes. So please, if you are a caregiver, then head over to our Myelopathy Caregivers Support Group on Facebook. It’s a safe space just for us. I hope to see you soon.

Virtual Coffee Breaks

And if you fancy popping along to the Virtual Coffee Breaks on our Support Group on Facebook and talking to people who care and understand, here are the upcoming dates and times:

  • 12th October at 2pm BST
  • 19th October at 6pm BST
  • 2nd November at 11am GMT
  • 9th November at 2pm GMT
  • 16th November at 6pm GMT

Hope to see you there!