Dear Mary
Mom is dying, what do I tell her?

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Dear Mary,

My Mother is in the hospital and I have been told by her oncologist that her breast cancer is much worse. She has less than 3 months to live. There is nothing left that anyone can do for her. Mom is being transferred to a facility for palliative patients. My Mother really does not know that she is dying. What do I say to her?

Nick:

Hello Nick:

Seems our families’ situations are very similar. I remember being in a very similar situation. The stress, worry and knowing what was coming was truly overwhelming. I wished I could make things stop, but knew that my “job” was to make my Dad’s final months as comfortable and as stress free for him as I possibly could.

My simple answer is:

Tell her as much as you think she can handle

and

as much as you can handle telling.

My more detailed answer involves the three rules that I lived by: They are:

Rule # 1 – Never Lie.

I promised myself and my Dad that I would always tell him the truth. I was not strong enough to tell my Dad that he was dying. I often skirted reality by not volunteering information. If he asked a direct question, I would answer it. If I needed to explain things to him, I was honest and then dealt with his reaction. Here are a couple of examples that will demonstrate how some of our conversations went.

My Dad’s question: Why do I have to go to this new place, why can’t I just go home?

My Answer: Dad, do you feel strong enough to go back home and take care of yourself? Do you think you are able to make your own meals, shop and take care of the house? Until you are able and strong enough to do all these things, the doctor wants you to go to a place where they can take care of you. If you are able and strong enough to return home, then I promise you, you will go home. Dad, does this make sense to you? Do you think you will need some help? My Dad agreed.

My Dad’s question: Will the doctor come and visit me at the new place?

My Answer: Another doctor will take over your care there. Your file is being transferred with you.

Rule # 2 – No Surprises

My Dad did not know that he was dying. He always thought that he would get better. Based on his very limited ability to deal with change, I wanted to keep my Dad informed of all things that were truly important about his care. I did not want him surprised or scared by anyone new or anything new.

Older adults do poorly at the best of times with surprises. Surprises can upset their whole day, their moods, ability to eat and function. Bad surprises can change their whole life. Surprises unless they come in the form of puppies or cake are not welcomed.

I let my Dad know about the new and different doctors and nurses that were coming in to visit him, in his new place. He did not know that they were part of a palliative care team, brought in to manage his pain and symptoms. He just knew that these people were there to help him.

It was decided that since I was not strong enough to tell my Dad that he was dying that the palliative team would take on this responsibility. The team explained “things” to my Dad, but he really did not understand what they were saying.

Rule # 3 – Be Their Advocate

It is a very stressful time as we watch our parents’ lives change from declining health to dying.

It is no surprise to me that the health care system is indeed similar to human bodies. Both decline and are dying. The health care system is stretched to new limits every day with every new patient. There were many times when my frustrations with ‘The System” were the greatest stress points in my life. I worked so hard to protect him, ensure he got the proper care and was not forgotten in the daily, hectic world of dealing with an aging population. I can remember wanting to talk with my Dad’s doctor. His doctor made his rounds at about 7:00 a.m. each day (how convenient and efficient for him – few family members were ever around at that time of day.) A couple of times, I sat outside my Dad’s room beginning at 6:00 a.m. with a large homemade poster saying:

“I NEED TO SPEAK TO MY DAD’S DOCTOR”.

My sign worked! No doctor would dare walk by without actually spending a minute to chat with me.

You have to ensure that everything and everybody is doing what is in the best interest of your parent, not what is in the best interest of the system.

There is great skill required to not completely “blowing up” at staff when things go wrong. When things did go wrong, I quickly learned that screaming added no value to my Dad’s care.

I did however write and document everything that I thought was wrong. I made sure that copies of my comments were given to the medical and care giving staff. Several times, the staff would verbally acknowledge my letter with the hopes that a simple, conversation would work things through. I always said to these verbal requests: “If I took the time and effort to write you (The System) a letter, I expected the same level of professionalism in return. Please reply to me in writing.”

The written letters that I received were always used to improve the care given to my Dad. They were my proof that not only did certain things about his care needed special attention, but that I (as his POA) was not a “push over.” I made sure that my Dad’s needs were taken care of. The written communications help ensure his better care.

I hope that my simple and more detailed answers will be of value to you and help in the care of your Mother. You are entering into a part of your life that you were never trained for. There will be days of joy and days of sadness. Try and get some sleep when you can and know that you are doing the best you can to help your Mom. This will give you great comfort in the years to come.

Mary

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Caregiving Matters

Mary is a daughter. She also Chairs our charity. Mary has also held Director roles on three other boards, most recently with The Palcare Network of York Region.

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