Facing the loss of your loved one and living through the pain of grief when they are gone…by francy Dickinson
Most of you know I lost my dear Georgie last year, in November. My holidays were blurry that first month…and so this year is my first holiday without my Georgie and the sadness and feeling of loneliness has been hard for me.
I enjoy hearing from all of you and I have been returning emails and helping anyone in need of a good talk through…but I have not been posting. I am in hopes that I will be able to concentrate and get posting again on a good speed in the new year. Its one of my first of the year goals.
Its my birthday…and New Years Eve and New Years Day used to be a happy time for me. I felt the whole world celebrated my birthday…so I always looked forward to it. In good times…George would always take me out dancing. Parties in cities close and far away. We were in the travel business…so traveling to a wonderful city for New Years was part of the excitement of the holidays. I am so aware of those memories when life was good and times were special with my guy. But what I want to share with you…is the fear and pain that took over when George started suffering from Parkinson’s and Alzheimer’s.
This idea that you give care until someone passes is really not true. The truth is, mental health issues mean that a person changes in personality and in their memory on a daily basis. So way before any end of life issues pop up…you are starting to lose the person you love. Each day their brain changes and in bits and pieces they leave and never return. So in essence you lose your loved one every day. It’s a very hard thing to live with and hard to understand. But you have to be aware its the truth. Doctors, nurses they do not tell you these things…they do not give care like you do. They treat and diagnose — you do the care giving so you feel and see the changes. It could be a forgotten name, or a forgotten word and you watch them try to find another word to use in the conversation. It could be an emotional outburst or a series of days when nothing is said at all…quiet! It could be a strange walking gait, or a repeated action over and over again.
The doctors don’t see it, your family doesn’t see it…YOU see it and FEEL it and it scares the beegeebies out of you! What can you do…how do you make it better? Can you exercise it out…can you calm them down…can you change how you have conversations with them. Can you take the car keys away, can you put alarms on the doors to hear when they just walk out…can you put up signs to help them remember things? Your mind starts to race and you feel. ALONE.
I can not take that feeling away from you. But I can tell you…that you must keep your mind on the goal. That goal is to give your loved one the best “end of life” that you can. It may be a year or ten years ahead…but just take a step at a time and try hard to get support. Write to me, join a support group…ask a few good friends to meet at your place each month so you can express your fears and upsets. YOU need to be strong…because the ride is not pretty and it’s not short.
You also need to have as much help as you can. Trying to be quiet about the struggle will only hurt you and your loved one. Telling family and friends and asking a few of them to be your mind and heart is what is needed. Do you have a friend that is good on the Internet…well ask them to look up the details of problems you are finding and working through. There are wonderful tips out there, but they have to be found so ask that friend to be your eyes on the world.
Do you have a friend that will drive you around? Ask them to take you to the hospital, doctor appointments and therapy treatments. That way you can control your loved one, keep them calm and the driving can be safely done by your friend. You have to ask, you have to say…I NEED HELP. If you don’t you are hurting yourself and your loved one.
The brain of a dementia patient is not going to magically heal…so you simply have to be verbal to people about the situation. I told everyone in the neighborhood. “If you see George walking in front of your house without me next to him. Go out and get him to come in for coffee and call me…please!” Who are you going to impress by being quiet? Let your village know that you have a situation that needs their help…and you will get it back. People want to help…they just don’t know what to do.
I know my loss of George, after his death, has been hard on me. I adored the guy and we were bestest friends and I feel empty. I have to heal and begin to bring new things into my life to feel whole again. I know that…but for me…its been a slow heal. What do I do?
I talk to family and friends about my sadness…I look at pictures of him, I have a little area in my bedroom that has an enlarged picture and candles that I burn each night. It calms me and I feel close to George when I do that…even though he is not there…I feel him there and it comforts me. You need to do the same thing….but in your own way. Find little routines that make you feel safe and start to fill up time in your life. Plan your days, have future events on the calendar and bit by bit…be a part of life around you.
I still pull away from big events. Sometimes in a big family gathering I feel more lonely than in a small one. So I say no…if I feel the event is too much for me. But I force myself to say YES…to events that are smaller with people I know well and love. I am trying to develop a new me and still give myself the honor of the old me that was a part of my duo relationship with George.
Just remember…do not do this alone. Do not think a nurse or doctor has emotional and physical answers to the day by day tasks of your care giving. Do not get upset of friends or family leave you all alone…and rejoice in the friends new and old that will stand by you when you ask for their help. Know that money is not going to grow on trees and you have to stick to a budget because it can be a long, long ride. Know that answers to help you are there…ask me or others that have gone through care giving to help…and be a trooper…ask again and again. Life is meant to live with others not on your own….ask!
I know you can do it…and I honor the fact you are standing there day after day giving someone who is unable to care for their own life…care. You are a good person. No one will give you a thanks…nor will you get a reward for your care. In the mind of your loved one they think they are still…just fine. Nothing has changed…you know better…you know life is now upside-down…yet they think their life is in control. Be brave…force yourself to be honest and talk about the dementia as if it was the flu…let out your voice and keep the honesty of the situation everyday. Hurting feelings is not the point, honesty is the point.
You saw the path to the end of their life was laid out…you stepped up and took their hand and walked next to them.Your loved one is not alone. That makes you a very special and loving person and I am proud to know you. I know you will be honest with them, your friends and yourself and not stand alone. I want you to remember the world does not know you have a problem or you need help…without your voice shouting it out. Be brave and shout and keep shouting till you have a group around you to help you in your journey. No one will say it…but you are loved. Your loved one does love you…even if they can not put that into words…so just hold the honestly of knowing they love you and you are doing the best job you can…each and every day.
Blessings on your New Year…Keep your own health and body strong…life is still there for you after care giving. francy