Caring for the elderly: Getting Real About My Grief

This may sound a bit odd to some, but it may also feel very real to many who are caring for the elderly. The photo of the bench above is the perfect representation of grief in my eyes.

When I saw it, I thought-oh my gosh. This is it. This is grief.

It’s exactly how I have felt many times-like I am alone in some vast area and no one can understand me, no one is near me. I am with me and myself and my thoughts and feelings. I’m in some aquarium floating in water and people may be there but they are on the other side of the glass. Separated from me.

In another dimension.

Grieving Someone Who Is Still Alive

Grieving while someone is still alive is not what we are taught is normal or even valid to feel. We are taught that ‘grief’ occurs when someone dies. Grief is death.

And yes, this is absolutely true. We most definitely grieve someone who has died and who we miss to no end. I have - many times, and very, very deeply.

But we can also grieve someone we have around us or are ‘losing’ that is still alive. We can, in fact, also grieve the life we used to have, friendships we miss, relationships that are changing, moments in time.

My Experience With Grief as a Caregiver

So today, I want to share more about my personal experiences with grief, as a caregiver and having lost the person my mom once was and experiencing the shift of many parts of my life since seeing her truly begin to change 13-14 years ago. She is still alive. I can still see her. But I am grieving.

Here are the things that I have directly grieved since the onset of my mom’s FTD:

• I have grieved my mom and the ability to talk to her when I needed it the most as I was going through university.

• I grieved the relationship I used to have with my dad prior to my mom’s illness. The second she got sick was the second it changed. The dynamic changed. I was no longer his little girl. I started having to take a parental role in the family much more frequently. I started managing both my parents’ affairs, their health, some of their financial responsibilities. Little Steph was little Steph no more.

• I grieved having the mom I knew on my wedding day. My mom sat in her wheelchair at the front of the reception at a table, silent and surrounded by no one but my dad. She did not stand beside me or lift my veil. She did not help me get dressed. In fact, I helped her get dressed on this day. I remember waking her up at around 10am, getting her out of bed and making sure she could get downstairs to the kitchen to get ready. I arranged all of this for her- which I was happy to do. But I still grieved this moment. I remember the photographer saying: ‘OK! Now let’s get your mom’s reaction when she sees you all dressed as a bride’….And the disappointment and sadness on the photographer’s face when he didn’t get the photo. When she just stared at me like I was a foreign object as I walked down the stairs. And my disappointment when I did not see any sort of photo of my mom’s excitement to see me as a bride in the photo gallery. That photo I always wanted.

• I grieved my mom’s ability to give a speech, to show me her love on the day she looked forward to for most of her life.

• I grieved the conversations and engagement she wanted to have with her friends who did not even say hi to her probably out of fear or the thought that she just wouldn’t know who they were.

• I grieved her ability to dance with me to celebrate the day.

• I grieved not having a mom to help me as the grandmother she always wanted to be and the mom I always imagined having when I was pregnant (3 times) and when I had my babies. This was particularly extremely difficult during my first pregnancy and postpartum period.

• I grieved friendships that shifted and that I lost when I started caring for my mom. Friends who had no idea what I was going through and who did not try to understand. Friends who just could not understand. People who never asked how I was doing or if I needed anything for years, despite me reaching out to them.

• I grieve on every holiday when I would have family dinners with my mom. When she would help prepare and serve food. When I saw the smile on her face of a family coming together. She would be so happy to see the family I created. But she cannot attend any holiday events anymore. And I think about this every time.

• I grieve on every birthday for the mom who no longer knows what day it is (does she know me?), can no longer call me or celebrate me in the way she used to (she used to celebrate me in a HUGE way- I mean huge. On my 16th birthday, I woke up to an entire plastic animal farm on my front lawn with a happy birthday sign and balloons and banners all over the house and her beaming at me when I came out of my room screaming HAPPY BIRTHDAY (I think she invented the COVID birthday before it existed)!!! Now I just don’t hear from her. I have not for years. No mom on my birthday.

• I grieve on my kids’ birthdays and on my mom’s birthday and on my dad’s birthday. On big occasions. She loved celebrations. She cannot join us anymore. She is not there.

• I grieved being able to call my mom for the million days during quarantine when I just did not feel I could make it another day with my kids in isolation or when I just wished she could video call my kids to say hi or drop off some food. I waved at her through a window as she stared at me not even certain if she knew who was waving at her. She did not even know it was a pandemic.

Handling Caregiver Grief

Now I will say this- my grief HAS become more manageable. I have adapted to it. It has become much less painful. I have accepted over time that this is part of caring for the elderly. This is now my life and this is what it is.

Does it still rear its ugly head? Absolutely. Am I able to process it and move forward much more easily? Yes. Are there new circumstances that arise when I suddenly fear a new stab of grief that I have not processed before? Oh yes.

But the ‘easing of grief’ came with time, therapy, journalling, thinking, adapting. This was not an overnight process, and no, my grief is not over. It hurts. It can stab me and open up the wound and sometimes it can take longer for that wound to heal. But I have learned what I need in this time. How I need to cope and process. How to move forward and what to do with that energy and those strong feelings.

If you are grieving, if you are struggling, if you don’t believe this can ever possibly get better or that everything feels SO HARD and SO AWFUL…and this pain is just unbearable and no one understands you and you are alone in your own dark corner.. and…- hey, I’ve been there too. And it’s ok to feel this way. And many others are feeling this way too.

Allow yourself permission to feel. Allow yourself permission to be sad. Allow yourself permission to be angry. Allow yourself permission to be happy. Allow yourself permission to feel alone. This is HARD.

But this is grief.