ANTICIPATORY GRIEF

I have decided to begin blogging again after a six month hiatus. I apologize for being gone for so long, but it was time I needed to regroup after my husband's death. I am now happily ensconced in a new home that I share with my daughter who is now my caregiver. I am greatly enjoying the much milder North Carolina winters compared to those in Pennsylvania.

Today, I saw the term "anticipatory grief" and in that particular usage, it confused me. I, of course, know the term and have read about it often. I looked up the definition and to summarize, it is when you or your loved one has a terminal disease and you are planning ahead for the death that you know is coming. It can happen to the one with the disease and/or their loved one.

This definition actually surprised and explained my confusion because I had always heard this term in relation to the caregivers. It is totally understandable in the role of a caregiver because they tend to be constantly exhausted, weary and missing the person their loved one used to be all while knowing (and anticipating) the death that is coming.

Because I had always heard of anticipatory grief in relation to the caregivers, I often wanted to scream out "What about us? We are in constant grief." I know I have been, even before my official diagnosis. My FTD is hereditary so I recognized I had it long before a doctor diagnosed it.

Knowing you are going to die is one thing. To paraphrase what was actually said recently to someone with FTD... we are all going to die sometime. And, yes, I am still appalled someone said that to her. The context was basically, stop complaining. 

Of course we, myself included, know life is not eternal and normally one doesn't focus on the fact we will die one day. Unless, of course, you know that you have a terminal disease that is constantly stealing abilities, both physical and mental. We know this will continue until we do die. We also know that our death will most likely be horrid. That definitely falls under anticipatory grief.

Anticipatory grief hits me every time a new symptom appears or one worsens enough that I notice it happening. It hits me every time I see a look of irritation on the face of a caregiver. It hits me every I am struggling to do a task that used to be second nature. 

An example of this occurred yesterday when I could not remember how to print a document I had just typed on this danged computer. I became so frustrated that I yelled, "I feel so stupid and useless!" My daughter, who is working from home, thought I was yelling because she couldn't help me right then and promised she would as soon as she could take a break. I yelled again, "I know you will, that doesn't matter. I just feel so stupid and useless!"

It wasn't only that I couldn't do it. Yes, that was a part of it but it was combined with the knowledge of what is to come. I know the ability to do what used to be simple things will continue to grow. Had she not been here, the printer would be toast. I would have thrown it to the floor or beat on it until it was totally broken and probably the computer as well.

When the solution was as simple as restarting my computer, you guessed it, I REALLY felt stupid and useless. I curled up on my bed and grieved. There is no other word for it. I grieved that my symptoms will continue to worsen until I am 100% dependent. I should be caring for her, not the other way around.

She would have told me to stop if she knew what I was feeling. She does know what to expect because she watched me caring for my mom and aunt until their passing. What I know, however, is that she will still be working full time long after I die. I was working part time or not working at all when I did it.

This was a great example of anticipatory grief from both sides. She grieves because she knows I will continue to worsen and need more of her care. She is also fully aware that she will no longer have me to depend on. I grieve because I know how horrible my future will most likely be and because I know what I will put her through.

This whole incident happened just a couple days after an incident when I was unable to breathe. I had swallowed a large pill but didn't realize it was still stuck in my throat. Most people would have realized that and taken another drink but, no, I took two more smaller pills that just added to the blockage and I could not breathe at all. We were both thankful that she was here, working from home, knowing I very well could have died. Seeing the fear on her face is something I never want to experience again. Yes, more grieving.

I apologize that my return to blogging was not an uplifting one. When I blog, I sit at the computer and somehow whatever is on my mind comes out. Hopefully, the next time, happy things come out!