The Fear of Loss and Pain of Grief


Facing the loss of your loved one and living through the pain of grief when they are gone…by francy Dickinson

699-happy-new-yearDear Francy:
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

Death in a Family- Here Are the Steps to Take

Coping with the death of a family member- step by step of what to do after the death of the loved one – that you have given care…by francy Dickinson

Caring for Parents thru End of LIfe Issues

My kind brother-in-law has just passed and I wanted to share some thoughts about what to do “after” the passing.

You think about the now when you are in the middle of care-giving. You worry about the medications, the water intake, the pain levels, the transitions to the commode, the pillow adjustments. Ice for a dry mouth, cold press for a fever, light message for aches…light music for calm and 20 minute visits from friends. You try to keep down the exhaustion of all-nite care that wakes up to all day care. You make the calls to Hospice; you arrange for bath ladies, cleaning staff, nurse visits. You listen to the oxygen intake and check for the machine PSI levels. You grind up the pills put them in applesauce and encourage the patient to swallow. There is a lot on your plate..out of hours…you are living moment to moment…so when the end comes…you sit back in dis-belief.

Are they gone, you wonder? As the breath is no longer straining…the quiet starts to settle down. The patient’s body is relaxed and the usual noise of the activity is gone. Or maybe you wake up with a start; realizing that you have not checked the patient in 20 minutes and you paddle over to their side to find them unusually quiet. It takes a few moments to have the mind set…that they are gone. Fear may come at first, but really the odd feeling of ending comes over you. You take in your breath, you touch a body that is now simply empty.

That is the odd feeling that comes next…you realize the body that had been so full of life and fight for life…is now empty. If you have not experienced being with a body of a person that has passed, it’s always hard the first time. But I wish I had the words to tell you it is NOT scary, it is very right. You just know; the fight is over and the final breath has been taken and it is time for peace and quiet.

You may think you have to run to the phone and call for help. But its best to just take a deep breath and be calm. You can touch them…they will still feel warm to touch and you will adjust their hair and fold their arms…or close their eyes. If they are in bed you can adjust the bedclothes to be tidy, if they are in a chair you can cover their lap with a blanket like they are just resting. Make them ‘presentable’ is what I think – so the family will see them and feel the experience is not so sad.

Your loved one is gone now, on to their next step through the door that appeared to them in the end. There is no rush to do anything. Caregivers are so tired at the end of life journeys that they need to just take time to regroup their mind before they take actions. You can just sit next to the body for a while, or take a little nap until the time to begin the calls starts. There is no race now, there is no time limit…you move on your own schedule and experience your own feelings in the quiet.

Dying at home, when you use Hospice is considered a normal death. You can call your family and let them know the senior has passed and tell them if they want to view the body, they need to come by within a couple of hours. If it is early in the morning and I find most of the deaths happen very early in the morning from 1-4AM…you can simply wait a few hours before you call and wake up your family. They will be expecting the call..they will react differently each one. You call only your immediate family that would want to view the body before it is removed.

Then you call the funeral home that is going to take care of the body. You ask them to come and pick up your loved one and give them a time. That way your family can come and see the body and then the funeral people will remove it into their care.

The next step is totally individual; I start to move around and clear up the immediate area. I remove all the pills, lotions, salves, patches, oxygen, needles or any other care giving things. I put them into the trash bags. Your next call is to hospice and they will take down the death time and ask you when you would like all the equipment to be removed. It’s best to ask them to pick up the equipment the next day because today will be very busy and you don’t want to miss the truck that will come to load-up the bed, commode, wheelchair, etc. They will also tell you they can not take the pills or other medications back. They have been charged to the Hospice account and paid for and they are yours. But they are very, very dangerous and before you have people coming in and out of your home…you need to remove the medication and put it into a plastic bag.

Here is a website that will explain what to do with the medications: Consumer Updates > How to Dispose of Unused Medicines

Now the basics have been done:

  • You have remained calm and taken your time to inform immediate family of the passing.
  • You have cleared the area around the body and adjusted the body for viewing.
  • You have called just immediate family members to come and view the body and told them the time range.
  • You have called the funeral home and made a time for the body pick-up.
  • You have called Hospice and reported the death and time and asked them to schedule a pick up of all the equipment the next day.
  • You have cleared out all medications and understand how to carefully dispose of them before others start to come into your home
  • You call your own spiritual support, what ever your tradition or faith requires of you to do. If it is cleaning the body; wait to do all of that with those that will join you for the ritual. Don’t over do…you are tired and you need to remain calm and just live the moment of quiet between you and your loved one.
I always find that being busy keeps me calm. So I tend to shuffle around and get the area cleaned of all signs of the care that has been given. I like to make the area feel more like my home again. I just put things in a plastic bag to deal with at a later time.
I have a personal ritual that I find an area by the body, like a side table. I find a picture of my loved one that has just passed and I put it on the table. I put a small tea candle next to it and light it up to bless the passing. I go outside to my yard and pick a few ferns, flowers or leaves to put in a small glass jar. This is my small area of honor for the past loved one. As the guests come to view the body and are in high distress you have given them a visual to concentrate on and allow them to remain calmer. After the body is removed I move my little honor table to a front hall or some place that I pass and each day for a week or as long as I need. I light a candle and just allow the love to flow through me onto the loved one that has passed. It’s my ritual…but I would be pleased to have you share it – in your own way.
The day will be a blur in the end. People will be coming in and out and you will be going over to the funeral home and you need to do that with a family member that you can trust to help you with the decisions you will have to make. A tribute obituary needs to be written and I often ask one of the visiting family members to do that…you can edit it and make it as small as you like. The obituaries can be expensive in the papers these days so be aware of your words. Add a simple picture that will represent your loved one, when they knew the most people. That might be 10-20 years before if they are 80+ . You are trying to bring the old friends and co-workers attention to the passing of their friend…so help them with a picture that looks like they remember.
I will not go into the funeral details now, I have a review of that coming in an eBook. It is too complicated…but I do want you to be ‘of mind’ money is money and spending over your budget can wound you deeply when you are in a state of sadness. Be wise and ask a trusted friend or family member to help you.
You do not have to call anyone else if you need rest. You can ask a family member that has not been doing the care giving and is refreshed and able to make calls to extended family and friends. If your faith requires you to make immediate decisions; then allow someone from your faith family to handle the details of the coming days.
Care-givers give so much to the loved one during the fight at the end of life…that they need to be cared for after the fight is over and the calm of passing comes into light. You need to keep yourself rested, drink water, eat food and try not to talk non-stop. Be gentle with yourself so you can process the passing and experience the grief that all family members feel. When my mother passed, I was her care giver in her last day and hours…it was hard for me to stop that thought pattern…and return to her daughter…that loved her and grieved for her passing. Be gentle on yourself…ask for help. Let others take over the complications and heal your own heart.
I thank you for your service in love to your spouse, family member or dear friend. How loving and kind it was for you to put your own life on hold…to concentrate on another journey to the end of their life. You deserve and will all have my appreciation. When you have taken that journey with someone; you always remember those steps and appreciate others that are taking them at this time.
I send a special love to my family that had surrounded my brother-in-law with so much love and care…and in their brave fight to the end…and the rejoicing of his life and memory that we are sharing now. francy
PS Please know that Hospice has wonderful written booklets to help you with the end of life issues. I so appreciate all that they do and I encourage you to use their services instead of facing the hardship of end of life – all alone. Taking time to read the information in your hospice package may seem overwhelming, but they have been there thousands of times before…use their experience to ease your transition through care giving to death issues. Your journey is always your own…your loved one is always different from anyone else…but certain steps are simply best to be taken to keep the process as gentle for you…as the care giver as it can be. Blessings, francy

You Have Cancer, Again – I heard those words

by francy Dickinson              

Dear Francy; I had breast cancer five years ago and now they have found a tumor in my liver. I’m more afraid this time than the first time, when they told me I almost passed out. I do not want chemo again and I do not want to take my time for living and have to worry about cancer and death. I want to ignore it, what now?

I understand because I was diagnosed with cancer in my late twenties and it was taken care of at that time and has not returned. But I went through three rounds of chemo. I also walked next to my sister with her cancer fight that ended way too soon and too young. Cancer hits every level of life and every age…but truth about cancer recovery stays quiet. So, lets open the windows and talk:

Things to think about if you have been told you have cancer:

  1. No matter what age you are, cancer in your body is yours. Take charge of the procedures used and know what the cancer is and where it is in your body. Do not take anyone’s word for anything, ask questions, look up ideas and thoughts that come to your mind.
  2. Follow your own drummer. If you have cravings for orange juice, then drink it…your body will talk to you and tell you what it needs, so listen!
  3. Everyone has a choice in care, you can do research and find a doctor and place that will give you the tri-pod treatment of good medical care, good supplemental and food nutrition, good emotional and spiritual support. This is how you get well, you have to attack all of the cancer in all of your body and mind. Attack it with your full body. It’s like going to work, you have to learn and read and just make up your mind that you will get well.
  4. First prepare for the worst. I always talk to those that are faced with a serious health concern to get the worst out of the way. Be a big kid, face the business side of your health. Make out a Health Care Directive, even if you’re young. Give the power to make decisions for you to someone you trust. Let them know what you want in your health care and how you would see the ending of your life. So they can then fight for you and make sure you get what you want in care when you are not feeling strong enough to do so for yourself. >> Do a will and make sure your few or many things have homes after you leave this life. Do not make your parents, spouse or best friends do this hard task for you. Take charge and get things in order. Then when you recover, you have it done and can forget it, but if you have years ahead of fighting your health, you do not have to be doing hard emotional things when you are extremely ill.
  5. Your things have a life and energy of you. So, to tuck a note into a envelop with a ring, or ear rings, or special poem or picture of you as a child. Have it ready to give to a loved one or friend on your passing -it will be a life long remembrance for those that are lucky enough to have loved you and carry your memory. This is hard, but it is a loving and grown up ritual that is very caring. I cherish the note my sister tucked in for me with Grandma’s diamond pin..I often open the note and just touch her writing, it brings me peace. Plus, for you it brings forth the closeness and importance of relationships and family.
  6. Pick your team and tell them. Look through your family and friends and pick about three people that will stand by you through your fight to be well. Talk to each of them and tell them, you want to know if you can count on them. You will need to talk, research, cry and recover with them. They will coach you to positive motivations, positive words and total dedication to wellness. I would not include your parents or your spouse. This is your bestest friends, maybe an aunt, or a sibling. Let them know how important it is for them to be there and make sure they are able to be strong for you. This is a fight and just like war, you need strong soldiers to be on the front line.
  7. When you close your eyes you need to visualize where your cancer is and what it looks like within your body. Ask a nurse or doctor to help you with this mind picture. Then when you do your mental healing each night, you can take the white light of love and send it right to the place that is infected and bath it with light to heal the area. You need to know where the cancer is so you can do this task twice daily. When you wake and when you are ready for sleep, you get quiet and bring in the white light and bath the area of infection and know it is clean and out of your body. This is the spiritual part of your healing, you do this as you get your chemo and other treatments and you take in your good food and supplements that boost your immune system. If you do not understand how, then read about meditation and prayer and learn how, this is your body and your recovery – you are in charge. Empower yourself with knowledge.
  8. Each night spend at least a half hour reading about supplements that others have taken to help them fight cancer and boost immune system. You will find chat rooms with others that have cancer and the same type that you have and they will give you ideas. This information will help you feel you are in charge, not a victim.
  9. Know that your mind is your strongest support – your mind, pushing the cancer out of your body mentally, building up your system’s immune abilities – your own brain can do that, but you have to do some reading and learn how. See this is like taking a college course for your life…learning everything you can each day.
  10. Write down goals. If you only have a daily goal of making it through that day, your life is not strong. Your life is strong when you have a goal for six months and a year away…seeing yourself on a trip, or in a local hot spot dancing the night away. You set your own goals and then write them down and post them up on the mirror in your bathroom. When I was taught this technique it turned around my healing. I went from day to day to a trip to Europe and a boyfriend with a Rolls Royce. I brought that to me…just by thinking and knowing I could live and I deserved life and good things ahead of me.
  11. If someone asks you how you are…say medium. It is hard to be fine, good or horrid…so verbally just say medium. It will usually fit. Bad days you stay home, good days you go out. But your good days may not look good to others. So do not let them bring you down, just smile and say “medium” and leave it at that, no more said. Do not talk about your health challenge to anyone but close family and your team of friends that support you. Do not give the cancer or infection in your body energy by talking about it to others.
  12. Go out– looking perfect is for the Paris Hiltons of the world. You are looking alive and that is a very good thing. If you need a scarf, hat, wig, or painted eye brows do it. No one cares. I used to be so afraid, then one day my girl friend told me that no one at the mall would be looking at me. She made me walk in the mall doors and yell bananas and see who would look at me and notice. So, in I walked through those doors and I yelled bananas at the top of my lungs and she was right, I was ignored. I changed my ways, I went where I wanted to go and did what I wanted to do and dismissed my beauty for enjoyment.
  13. Write – get a journal this minute and write down your thoughts, ideas, and trivia. Write down questions for the doctors and ideas of how to make care giving even better for others. Write sad or awful thoughts, just write. Keep it private, write down those wild ideas and get mad on paper. It will free you of frustration and build your mind strong.
  14. Find music that sends you away on a cloud, lets you float through a proceedure or chemo treatment that is uncomfortable. Music that is easy and has a heart beat background, let yourself dive into the music and become the music. Use headphones and MP3 player so you get a wonderful surround stereo to fill your mind with peace and comfort during times of stress and pain.
  15. Talk about the possibility of death with a stranger. Yes, a stranger. I found that when I talked to a stranger I could be real and me. I did not have to be careful not to upset anyone I knew. I found a Chaplain and went to talk to him when ever I need to. I would talk about my feelings on death and dying. On losing my dignity and what dignity was for me. I got it all out and it made me feel so much lighter. I talked about my faith – not the faith that I found at home or church or on TV…my own personal feelings of faith. It changed me totally…. I was able to be honest with me. My own thoughts and fears were able to come out. Then I went back home and smiled, but inside I felt strong.

Your family does not know what to do to help you. You have to be a traffic cop to keep ahead of the well wisher. So ask others to help you. They will ask you all the time, how can I help, do you need anything? Say YES, I need a new pair of slippers, I need some fresh flowers every two weeks, I need some really expensive chocolate, I need…you have to say it and ask for help. They want to help, they just do not know how.

I know this is trivia to many people, but when you have cancer, you long for truth and it is hard to find. So it is my gift to you – keep doing, keep thinking not just living but strong body life. Keep giving to others to keep your mind calm and most of all…listen to the you inside, you have answers…they are just small whispers that you need to be quiet to hear.

If the day comes that you hear your body say…it’s over surrender…then listen and hear what you need to hear from your own loving center. You are the general in this war, it is your choice to fight or to stand back. But be wise, wars often seem the worst just before they are won. Take wise steps when you are talking of retreat, yet remember that retreat can often give you a time of strength, feeling of wellness and time to say good bye to those that you adore.

You are loved by strange lady in Tacoma, Washington. Does that help? No I suppose not, but the point is, there are folks out there that you have touched in your life, they are spread out all over and they will be sending you their love and energy. Together with your own self love and energy, you will heal. Believe it, it happens everyday- it happened to me.  Blessings, francy