End of life can be scary for both patient, family
This is a question / answer column in our local paper, the Roanoke Times.
Dear Dr. Camardi: I’m in a panic, I’m really scared and I just don’t know what to say or how to act.
My mother is dying because of cancer and she has little time left and she wants me to be with her all the time. She cries when I leave — she really screams out “don’t leave me” when I have to work or go to the store or something, and it just kills me.
I have her at home with my sister and me, and I got time off from work when her doctor filled out some papers telling my boss what was happening. Now I wish I didn’t listen to her and left her in the hospital to die. I hate myself for saying that because she wanted to die at home and I thought I could deal with it, but I can’t.
From what the doctor says, she’s going to die any day. What in God’s name do I have to do, what do I say, I’m so confused.
I’m so sorry for you and your mother that you are going through this ordeal, but let’s take a deep breath and think about it.
I commend you for not “running away” — as many people do and when you think about it, who can blame them? But you’ve decided not to and as difficult and painful as this time is, you’ve made the commitment in getting you and Mom through this natural process.
It may be helpful if you think that it’s always been you and Mom anyway: as a mother helping her child at the start of life and now as a daughter helping her mother at the end of life; it’s always been about the two of you. Now let’s work through this.
First thing is that Mom does not sound too comfortable, so have her medications been recently reviewed and optimized for her condition? And have you and your doctor thought about a referral to a hospice care center?
I have been involved with the hospice movement from the 1980s, ranging from medical directorship of a hospice service to being an avid utilizer and advocate. In short, I can’t say enough about hospice, and I urge you to explore the key services they provide.
Understand that Mom will soon probably start to refuse to eat or drink. Do not force food or fluids but try to keep the mouth and lips moist for comfort. At some point, Mom will be sleeping more and more, become restless and may start to hallucinate. She may have skin color changes, become very congested and have labored breathing. Be prepared, as this is all part of the process.
The next key consideration is the spiritual factor, which gives great comfort to all concerned and cannot be underestimated.
Arranging for pastoral visits can be very helpful during this time. I have seen it ease deep emotional suffering and allow some understanding of this sorrowful mystery of life. Even if you do not consider yourselves to be religious people, I strongly encourage you to be open to spiritual counseling as your loved one — and I have seen this many time over the years — may feel the need but may not be able to or know how to ask. Do it for them.
I’d ask you to consider, if need be, that certain aspects of the past be brought to a close with “I’m sorry” or “I forgive you” and “I love you” and “Thank you.” Now is not the time to revisit what can’t be undone. We are all imperfect people and tend to make mistakes, big and small, and those judgments of the past can wait. This time, this moment with Mom must be one of peace.
Next, please make the necessary arrangements with your funeral director of choice as soon as possible. This also means getting in touch with family and friends who should know that somebody important to them is not doing well. This is not being overly morbid, this is being prepared because when Mom does pass away, things will move quickly and some things tend to be overlooked.
Finally, what do you do during that time of dying as death approaches?
This may sound strange but please listen closely: Silence is possibly the greatest thing you can do. Simply being there to let Mom emote as she deems fit with a cool washcloth, a tissue to wipe away a tear, a soft hug when needed without a lot of words that the dying person has to struggle to process.
It may not seem like it to you, but the dying person even through the disease and the medication is a bundle of emotions struggling to reason with what is happening to them. Just hold her hand and when the time comes — and if you’re quiet enough, you’ll “hear” that whisper of a voice move inside you — you’ll know when to say: “It’s OK Mom, just let go.”
Dr. Michael Camardi is a geriatrician at the Carilion Center for Healthy Aging. His columns run on the third Tuesday of each month in Extra.
If you have questions for Camardi, please mail them to him at Center for Healthy Aging, 2118 Rosalind Ave., Roanoke, VA 24014 or e-mail them to firstname.lastname@example.org with “Age Matters” in the subject line.
GREAT ADVICE DOC – thats why I wanted to share it!