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.
https://hive.blog/hive-114105/@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
So very sad to have to see the decline, but thank you for writing this blog @hope777! I'm sure many will benefit from your advice. Reblogging for more exposure and future reference.
True @lizelle thank you so much for the encouragement and support. 🌹
Oh, Thank you Hope for such a compelling and frank discussion of a process that comes to us all at some point.
I think for me, dealing with the grief prior to the loss was the hardest hill to climb. It was not good with my father but by the time my mother passed 8 years later I had experience and process to help. Today, I look at the end stage of my mother positively rather than with the guilt and shame my father's passing caused me.
Again, Thanks!
It's my pleasure, it also helps me to put the whole process into words. Thank you @bigtom13 for taking the time to read and comment.
I am sorry that you had to go through that but also glad that it was better for you with your mother. Thank you for giving your perspective on this process.
Blessings for the week.
This was an extraordinary piece of writing in getting to the nitty-gritty of things.
All of these things I'm getting the right information to planning everything to admitting to feelings of loss yeah, I can tell you but I did all the right things for my father and yet I still came up in in the arrears. They lived 900 miles from me since I moved when I get married. This made everything more complicated as my mother would not move because she liked where she was and yet she's not manage my father so I spent the next 2 years back and forth for a month or two down there and then running home to take care of my business here. taking time for oneself is not an option especially if you're not in your own environment. I think probably mine is a. I've been probably morning is a different case the normal but I can assure you that all the information and feelings and everything that you were feeling and the have to you have to give it out is priceless. Take it from somebody who's been there with both parents. The story with my mother is a story for another day because after my father my mother a little bit easier oh, but it's never easy. Wonderful Peace, Hope!
Upped and reposted
!tip
Thank you, this is such a compliment. 🌻
Thank dear @dswigle. The above is so encouraging. I have tears in my eyes ❣️
Thank you for the support of my post too. I really appreciate it.
Oh, I really should proof my own writing. But, thanks. You are truly inspirational. xo
Thanks again. 🙂🌻
🎁 Hi @hope777! You have received 0.1 HIVE tip from @dswigle!
Check out @dswigle blog here and follow if you like the content :)
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Thank you, you are an angel.👼
Hi dear getting older this is one of the things I don’t love. The roles are being revered and the parents who need care and in these covid times also the mental worrying about them. I thought this was a great blog hope thank you
Thank you @brittandjosie for reading my blog and your comment. Yes, it's not easy to grow old.
Thank you so much, I really appreciate it.🌼🌺🌼
I know all-too-well about this. My mother had a little demential, but anesthesia from a surgery threw her into full-blown Alzheimer's. I "lost" my mother several years before she died. My heart goes out to you. 💜
Thank you @kittygirl for stopping by and commenting. I am sorry that you had to go through that too. Thank you for your kind words, it helps to know that others had a similar experience and know what you are going through. 💗🌺
So true that the grieving process can start when your loved ones are still alive as you are grieving the loss of what it previously was and their diminishing health!
So glad you shared your struggles and also the wonderful times you are having.
When my husband's parents were getting on and their health diminishing he would say "enjoy today for this may be as good as it gets!" Which goes along with what you say of enjoying the time you have with them and make memories!
Thank-you for sharing!
Thank you so much for reading, commenting and your encouraging words. I really appreciate it.🌹
I will remember the above, I think I am making it my motto for the days to come.
Blessings.🌹