Almost six years ago, I lost my father due to complications from dementia. Also, six years ago, my journey as a caregiver came to an end. It’s common for family caregivers to feel overlooked, alone, misunderstood, burned out, and confused. I would be the first to say I felt every one of those emotions and more during my time as a caregiver. But I also learned what strength, empathy, compassion, understanding, and true resiliency were.
As a daughter, I knew I would naturally outlive my parents. But what I never prepared myself for was the day I would have to assume a role that never crossed my mind: caregiver. I wish I could have told myself back then that I had what it took, and that I was enough. If you are reading this blog, it’s safe to say you are on the journey as a caregiver, whether you just started or are in full swing. I want to affirm that you are enough and have what it takes to give your loved one the best care possible.
I would be the first to say that caring for an individual with dementia isn’t devoid of challenges, but as a family caregiver, there are many blessings. If you are on a solo team, remember that you are human, and it’s okay to take some time for you. Even a caregiver deserves a break. Knowing your local respite care agencies will give you the ability to get the caregiver break you need so that you can remain the best caregiver for your loved one.
If you are fortunate enough to be sharing the load with other loved ones, don’t hesitate to do a pulse check every so often. I encourage an early team meeting to designate tasks, create a care plan and ensure that you all are on the same page regarding what caregiving should entail. Open and frequent conversations are among the best ways to make sure that your loved one has the best care possible. Discuss your threshold and non-negotiables; these are the best ways to minimize everyone’s stress level. Know your strengths and weakness and be forthcoming with your family care team. The only winner on this team is your loved one; remind yourself often.
I want to urge you to look for moments of joy during your journey. Dementia is way more than just memory loss. Acknowledging that makes the time spent as a caregiver that much more bearable. Your loved one isn’t intentionally being difficult. If they had a choice, I would like to think that they would put your needs and comfort before anything else. The world as they know it is changing rapidly, and sometimes that’s their only response. Empathize with them, let them know that you see, understand, and are not upset with them. Being compassionate won’t just change the tempo but can change their mood. Whether you are caregiving alone or with a family care team, know it’s okay to ask for help and ask for help often. It doesn’t make you any less of a caregiver for ensuring that you are full enough to pour into your loved ones and meet their needs. Think about the future. I know everyone will say live in the now, but I want to encourage you to consider the future.
- It’s okay for your loved one to need more support than you could realistically offer.
- It’s okay to grieve what you thought life should have been.
- It’s okay to cry, laugh, scream, run.
- It’s okay just to be!