Who am I now that she’s gone: Life after losing a loved one to dementia

‘Caregiver’ definitely became my identity for my relatives, friends and society for almost 12 years. My father had Dementia. And though it’s just been a few months since we lost him, I can’t help but remember his little quirks and odd demands that he would make while he was staying with us. My days and nights were all spent in helping my father, trying my best to be there with him. Losing a parent does leave a palpable void.

But having lost someone to dementia becomes an altogether different experience: you lose your loved one not once, but twice – once when the disease strikes and ones when they are physically no more. Though physically they may be the same person but deep within you know, a lot has changed.  I saw him transform as the disease progressed, to the point where I was no more than a friendly familiar person who comes to help him with his work.

When we were first briefed about my father’s condition, I didn’t realize that we had embarked on a journey that would have a lasting impact on almost every aspect of my life. That’s the thing about caregiving for someone who is terminally ill: your life changes. The aftermath of caregiving brings out a different person. And while you are dealing with it, you internalize a lot: blame and feel guilty about not having been a better care person; tired and exhausted after years of caregiving. The struggle to get back to the life we once lead is real. Emotional turmoil coupled with a sense of loss and hopelessness makes the entire process of coping and healing difficult.

Life is a balance of holding on letting go. Being caregivers, the journey of coping and slipping back to the life, is difficult but something that needs to be done. Acceptance of the situation is something that comes with time. However, the following points might help someone find their way back.

1) Reflect: It’s important to utilize the time in hand, think, reflect and get a perspective on life. Taking such a stand point helps in gaining an insight on how life has been in these many years and appreciate the efforts one has taken, thereby helping in lowering the guilt. This also acts as an opportunity to realize what to look out for in life.

2) Find meaning: Pick up a hobby or something that you’ve always enjoyed doing. Make time for all the things that couldn’t be done in all this while. For those who gave up their jobs to take care for their loved ones can resume work, or other social engagements to get back normalcy. Sometimes just getting into other things helps distract from the pain: you look forward to something in life.

3) Reach out: Often the first response post the demise is to disconnect from the society and be by oneself. Such a response complicates the situation further as we end up feeling overwhelmed by our emotions. Hence, it’s wise to make an effort to move out gradually and talk to friends and family. This helps in venting out pent up emotions. Life is hard and having support of family and friends makes the process of coping gentle.

4) Physical health: Many caregivers often neglect their own health while looking after their loved ones. The whole process of caregiving for years weighs you down. Physical strain and stress tends to lower body immunity. Hence, it’s important to start taking care of your body and adapt a healthy lifestyle.

5) Let go: A part of healing also comes from releasing our attachment to the things that belonged to our loved ones. And though it’s tough, it’s befitting to slowly and graciously part from the things that were a part of the person. It helps in releasing a lot of residual emotions. Also, if doing so single handedly is tough, take help from friends and family.

It’s about time to pick up ourselves from where we left. After all, death doesn’t put an end to love. The memories of our loved ones will always stay on.

We at Samvedna Care aim to help seniors live happy, active and independent lives, in the comfort of their home and community through interactive caregiving.

Samvedna Care was established in October 2013 with two complementary goals – firstly to provide quality home care services to seniors with limited mobility and social interaction due to various constraints, and secondly to facilitate stimulating community interaction and participation.

Our Dementia Care services are –