Yesterday, I wrote not so much about Anticipatory grief itself as describing the decline in my parents health and how in the end, I realised that I was grieving. You can read about it below.
@hope777/grieving-the-living-anticipatory-grief-part-1
My Mom and Dad on their 55th Wedding anniversary, 10 October 2017.
What is Anticipatory Grief??
Unlike the grief and mourning that happen after someone has passed away, this "anticipatory grief" begins before the person has died. But the emotions can be similar.
When someone has a disease, injury, or condition that permanently changes their personality, like Alzheimer's, the grief may come as it sinks in that your loved one, as you knew them, will be "gone" even before they're gone.
My Mom is now in a wheelchair, she cannot walk at all. She cannot eat by herself anymore. The last 8 months she went into full dementia. She has lost touch with reality. She still recognises us, except for a few times. I check with her every day. When I greet her in the mornings, I asked her whom I am. I am grateful for each day she still knows who I am.
The biggest problem at the moment is that she is not eating well. It seems nothing tastes good to her anymore. She was hospitalized 2x this year. She weighs 43kg. When I look at her, seeing how thin she is, my heart breaks over and over.
Symptoms of Anticipatory Grief
The symptoms are sadness, anxiety, a feeling of loss, like you already lost that person. In a way you did. The one person that I could share everything with is "gone". I can't discuss anything with my Mom anymore, cannot share my joys and sorrows. Although she is here with me, I have lost her. She is just a shadow of her former self.
If you are the main caregiver, then you might long for your independence and freedom. Much of your time and energy going to your loved one that needs you. It can lead to feelings of guilt.
You can also feel a sense of loss and longing for your independence and freedom as your own life changes, because much of your time and energy is now going to someone who needs you. And that can also lead to guilt.
The above is not my experience. My father and I employed a live-in caretaker almost a year ago to help care for my Mom and look after him. We are very fortunate that we have her. I think my Dad is experiencing the lost of freedom as he used to love to get into his car and just drove to the shops etc. Now he cannot, he must always make sure someone is with my mom.
But I do experience feelings of guilt. Guilt of not spending enough time with her. Although I expect her not to be around for much longer, my life goes on. I still have to work and earn money. Sometimes when I go to spend time with her, I struggle to talk to her. Lots of times she is so caught up in her hallucinations it's impossible to have a conversation. So, often, I leave much sooner as planned.
Other symptoms you might experience are feelings of bitterness, anger, and even resentment. These feelings might surfaced as you realise you cannot change the outcome.
I don't experience that type of feelings with my Mom, but I do with my Dad, with his symptoms of Alzheimer's of suspicion, accusing the people nearest to him of theft. That again bring feelings of guilt and I have to remind myself over and over it's not the real him, it's the symptoms of his disease. Sometimes I lost my temper with him, leading again to extreme guilt. He was the one person, my whole life I was the nearest too. Except for my husband and children, he was my everything, my Hero, my counselor. We almost never had differences, now this terrible disease is causing a "break" in our family and lots of strive.
It's important to remember that all of these feelings are normal in such a difficult situation. And often, primary caregivers -- those whose take on the daily responsibility for someone's well-being -- feel a piece of this loss each day, more deeply and in a way that others in their lives probably don't.
How do you cope with Anticipatory Grief??
- Acknowledge your feelings. Share what you are going through with a good friend, a counselor or even in a private journal. It helps to share your feelings when you feel "sad, tired, frustrated, and powerless.*
Your loved one might also be dealing with their own Anticipatory Grief. They are also grieving the loss of their independence and approaching death. If your loved one is still clear of mind you might find comfort together. To cry and admit your feelings are OK. It helps to vent your pent-up emotions.
Get as much as possible information of your loved one's condition. Make sure you know the symptoms, treatments, side effects and progression. Information empowers and it will make you feel more in control as you know what to expect in different stages of the disease.
Plan ahead - make sure your loved one's affairs is in order. If he or she can still help, you can do it together.
- Create Memories
Spend time together, create memories that will be with you after your loved one is gone. Even if it is just an afternoon in the park, looking through the family album or playing a board game. It will strengthen your bond and provide some meaningful activities to still enjoy together.
I am grateful for the past few years, since my parents came to live with us, we had lots of times together that created memories. I remember this one day last summer when it was very hot. I decide that the whole family will go cool down in the lagoon. My Mom is not a big fan of water as she cannot swim. While we were taking her into the lagoon she said to me: you know I can't swim. I said relax Mom, today, you are. I just float with her in the lagoon and in the end she and my Dad enjoyed it a lot.
We had Christmases together, family gatherings and lots of barbecues and picnics at the beach. We were blessed to be able to celebrate her 80th birthday, on 21 March, this year with a big part of the family. It was just after she came out of the hospital and her mind was clearer for a brief period.
- Lastly make time for yourself and normal activities.
You have to find ways to stay connected to your normal life, apart from your role as caregiver.
Schedule lunch dates, take an art class, go for a massage or facial. You get the idea. It will help you to have relaxing times, and feel less stressed out and overwhelmed.
However you choose to do it, making time for yourself isn't indulgent or selfish.
It's a critical part of your self-care. You cannot look after your loved one if you don't look after yourself. It can empower you and help you to handle the everyday challenges.
When you're feeling overwhelmed, reach out to friends and family members and ask for their help -- whether it's to pick up groceries, to call the doctor's office and make an appointment, or to just come sit with you and give you a hug, no conversation required.
Source: https://www.webmd.com/palliative-care/caregiver-grief-and-bereavement
Thank you for reading and letting me share my experience with you.
hope777
