Caregivers are usually dependable, persistent, detailed, vigilant – and seemingly tireless. But not many people would characterize caregivers as lonely. Yet as a caregiver, I have experienced many periods of loneliness. Depending on your circumstances, you may feel the same way.
I am caregiver to my husband who has had Parkinson’s Disease for 19 years. During the first 17 years, I worked outside our home, and he stayed home alone. But for the last two years, I have been caregiving full time as he can no longer be alone.
Caregiving consumes my days. However, as his disease progresses and he begins to interact less and less, I have time to myself while staying relatively quiet and always alert to his next need.
Whatever your situation is, whether you care for a grandchild, an adult child, a spouse or a dear friend, perhaps you are also experiencing periods of loneliness.
What can we do to combat this feeling?
We need something to occupy our mind, to stimulate our brain and to provide company or companionship. There is no magic pill that can accomplish all of these, but here are some things that have worked for me.
We can start a list of fun things to do the next time we have an afternoon out. This could include movies we want to see, museums we want to visit, a new store we want to check out, people we want to visit, etc.
My list keeps changing, but it excites me to know I have a plan for my next day out. It is a positive step looking toward the future!
Depending on our caregiving circumstances, we may have time to do something quietly at home. This might be a good time to dust off an old hobby we once loved.
There might be little things we can enjoy once again – sewing, puzzles, drawing or painting, crafts, knitting or crocheting, music, or reading. We could even learn a new language or skill. YouTube has great videos to help us along the way.
Recently, I needed to find a quiet activity to do while my husband sleeps, so I am enjoying sewing again. What will you choose that fits your situation? The choices are endless!
Family means different things to different people, but whoever is ‘family’ to you, is important to you. During this time of our lives, these people keep us connected to the world. We need to nurture those relationships, either in person or through technology.
Visiting relatives and friends can make great outings for us and our patient. Mobility issues may make this challenging, but if the outing is possible, it will help both patient and caregiver keep in touch with the ‘outside world.’
Whatever your circumstances, being home-bound is not an obstacle to staying in touch. We live in an age with multiple options: snail mail, email, social media, phones, FaceTime, Skype and ever-evolving technology. Let’s use every tool available to us to keep these important relationships alive.
Caregivers have much in common with each other, and they understand the issues and loneliness involved in caregiving. That is why I am so thankful for the friends I have made in the support group I attend. They remind me that I am not alone in this journey of providing care for my loved one.
A friend recently confided that the Hospice workers and visiting nurses who came into her home regularly became her support group. From the nurses to the chaplain to the social worker, they were encouraging and provided her with company and companionship during her husband’s battle with ALS.
You may be able to find a group specific to your patient’s condition or disease by asking his doctor or specialist or by searching online. Many groups now have Facebook pages or websites with discussion boards and chat features where you can get virtual support.
I am blessed to have a support group that is truly positive and encouraging, and there are many others out there. I hope you can find one too!
I used to dismiss the idea of a diary or journal because I didn’t think I had much to say. But one day, when I saw new developments in my husband’s condition, I decided to write them down.
Perhaps I was thinking it was a way to record his symptoms to mention to the doctor next time we had a visit. Perhaps I just needed to vent. But I did write a few things that day. Then a few days later, another symptom appeared, so I wrote a little more.
At first, I didn’t really share feelings – just facts. But soon this casual journal morphed into a diary about how I was coping with my husband’s Parkinson’s. I use a digital MS Word journal document on my desktop, but you may prefer paper and pen.
Of course, keeping a journal may not work for everyone, but it has really helped me gather my thoughts and give them validity.
After writing for a while, I decided to share some of my work. My support group even encouraged me to begin a blog, specifically discussing issues related to Parkinson’s Disease. If you’re interested, you can take a look here.
This is by no means an exhaustive list of things we can do to battle the loneliness we may feel as care-givers. But we must not give up. There is hope for those lonely times.
Which circumstances in life make you feel lonely? How do you overcome the loneliness syndrome? Have you tried any of the tips shared in this article? Which ones worked for you? Please share your experience with loneliness as a caregiver in the comments below.