Something to Think About: a blog on end of life
For the last 30 years all of my patients have died. I will be sharing observations and ideas that I have gathered from working with people in their final months of life.
You may not agree with what I am saying. I don't pretend that what I've figured out about living and dying is "capital 'T' truth" or that it is absolutely how everyone dies. This blog is just an expression of my experiences and ideas.
Barbara, I am caring for my Mother in our home. She is in denial over her situation. She is bed bound but insists she is going to walk again and go back to her apartment and live on her own. I want to be encouraging but she will decide she wants me to get her up and go for a walk. When things are not happening she gets frustrated and that frustration turns into anger towards me. I know she loves me and that we just tend to lash out at the people we love the most. I wish that we could somehow let her stay in this denial but it is not turning out to be a happy or positive place. She is always waiting for tomorrow to be a better day and realistically her best day now is as good as it is going to get.
Another problem we are having is that she is not being honest about new pains and symptoms. We have nurses coming in daily and also have Hospice involved. She takes very little pain medication as she "is afraid she will become addicted to it.” The nurses and doctor have told her over and over that she needs to take the medication when needed but she explains everything away. The last of our worries is that she doesn't want to pay for any of the things needed to take care of her. She thinks she doesn't need some of these things, but for her own comfort and to care for her properly they are a must. So my husband and I have taken on the financial responsibility of everything (renting a hospital bed, commode, diapers, bed pads, special creams, the increase in our hydro bill for her oxygen machine, etc.). Her money is going into an apartment that she can never get back to living in.
You have said we die as we lived. Well, my mother is a very stubborn person and it is magnified ten fold now. I am just not sure if between her denial and stubbornness we can manage her care from home. I love her very much and want to take care of her in her final days but don't want our frustrations to ruin the wonderful relationship we have always had.
I just have to end on a good note as I don't want you to think this situation is all bad and stressful. Caring for my mother has brought us even closer. We have lots of talks, we laugh, and we cry. I know that when her time comes that we did everything we could for her to make her final months/weeks/days as good as possible and surrounded by the love of her family.
I appreciate how much you love your mother. I see the challenge you are dealing with in her attitude and behavior. As much as we love someone our feelings can turn to frustration and even anger as our efforts to care for them are sabotaged. I am glad to see you have nurses to assist you. You mentioned Hospice. Is it a Medicare certified hospice? Because if it is they should be paying for the hospital bed, her oxygen, and any medications that are related to her life threatening illness. Hospice also has a Social Worker that would be a good source of support for you. Talk to her about the challenges of caring, and your mother’s denial.
It appears her denial is interfering with her safety as well as her being able to appreciate each day. I think you have to be honest and direct with her, even if she won't appreciate hearing what you have to say. "I know you want to go for a walk with your walker but your body can't support its weight anymore. Shall we try to get you to sit in the chair instead?" You can gently remind her she has a life threatening illness, as you said in this email "this is as good as it gets.” You don't have to dwell on her illness and weakness but don't agree with her in her denial. "No, Mom, you won't be going back to your apartment. I'm sorry but the disease isn't going to let that happen." "This is how things are now, Mom. Let's do the best we can." You can be positive and truthful at the same time. You will have to be the firm, stable one.
You can be firm yet loving. When she is angry and lashes out at you, tell her that that is not okay, you understand her frustration, but don't direct it at you. You must take care of yourself or you will not be able to continue to care for her.
About the pain medication, the most common fear people have is of becoming addicted. What about having the nurse explain to her why she isn't going to become addicted? If she is not having pain related to her illness what is the pain medicine for? Why is she taking it? Does it need to be given routinely, on a scheduled basis, rather than on an ask for basis? It could become just one more of her pills that she takes without an issue being made of what it is.
As hard as it will be to not only read, but follow through with the advice in this coming paragraph, know that I give it with gentleness and concern in my heart. We can set limits and still be gentle, understanding and loving.
I reread your email, and it sounds as if Mom is running the show (from her unrealistic perspective) and it is time for you and your husband to stand up to her and take charge. You can't continue to let your lives be dictated by someone who is not looking at how others lives are being affected by their behavior. Just because she will die someday doesn't mean she can have everything the way she wants. We often see our elderly and sick acting like little children with their demands and we become like adults giving in to a badly behaved child. If you and your husband don't begin setting some limits, I agree you will reach a point where it is just too much to care for her in your home.
Something more on Caring for Mom at Home...
I would encourage those caring for a loved one in thier final act of living to sit down with the whole family and watch, NEW RULES for End of Life Care. It helps the dying and the watchers understand what is happening in the months to days to hours to minutes before death. In a non-threatening way, the film will allay fears about pain medications, narcotics and addiction, and dehydration.
Dear Barbara: I just listened to your interview on the Art of Manliness. As I go through life I find it useful to ask others what they have learned in any particular activity or endeavor. With the many contacts you have had with those finishing their time here, I wonder what lessons they may have shared with you? What would they have done differently, what would they tell us?
Actually I am writing a book about those various lessons I have learned from the people I have worked with over the years. So those lessons are in my mind right now.
Here are some thoughts: Most people, I am sorry to say, are so caught up in the process of getting treatment (and generally get very sick in that process) that they don’t feel well enough to have deep thoughts. They certainly don’t want to “jinx” their treatment by thinking about dying and eventual death. I’ve learned we spend so much time trying to stay alive that we stop enjoying the life we have. I see that as a great sadness that a person may not even know they are experiencing.
Families have their fears and concerns. They are more realistic on some level but generally play the game of “this is going to work” and miss their opportunity to do and say those things that are important.
If you asked a person on the day they were dying what they would have done differently I think they would tell you, if they could (and they can’t, it’s not like in the movies), that there should have been less treatment for this life threatening illness. They would say they would have done something they always wanted to do and didn’t instead. I don’t think they would have added another week or even a month to the life they were living with all its debilitation and side effects. Dying seems to come as a surprise. “I did all the treatment, suffered the side effects, gave up my activities, did everything the doctors said and I’m dying? How can that be? I wish I had eaten the dessert that no one said I should have.”
The dying process is such that it is in the months before death that a person is alert and thinking about the might have beens. As death draws closer into the weeks before death the withdrawal process has become almost complete. All thoughts are held within. I believe there is a lot of processing of one’s life occurring, but on the inside. “What have I done? Who have I touched?” Thoughts and considerations. Each person will have thoughts that apply to their individual life but the key word here is individual. We will look back on our own life's direction, accomplishments, and regrets. It seems to be more of an internal processing, an assessment. These are seldom shared.
As I reread this maybe no one is thinking any of these thoughts as they approach death. Maybe the above is what I have perceived and what I would think if it was happening to me. Maybe the most we can know and learn from another’s life choices is not what they say or don’t say but from what registers within us. Something to think about.
Something more about Death Draws Closer...
I wrote A Time To Live when my mother and step father were diagnosed with stage 4 lung cancer within months of each other. A Time To Live is for the person who is faced with a chronic or life threatening diagnosis. It offers suggestions on food, sleep, how to deal with affects of medications... and ideas of how to use this "gift of time" that they have in front of them.
QUESTION to Barbara: I need some help. As of yesterday afternoon I am officially fed up. I have been an RN case manager for seven years. The whole “industry” is making my heart sick for so many reasons. I’m not going to list them because I don’t want to focus on what’s wrong but I want to do something different. I want to teach people not to fear the inevitable. I want to help make death as much a normal part of life as birth. Of course there is sadness. That’s normal. But the sheer frantic panic that I see in loved ones week to week doesn’t have to happen. How can I do that on a broader scale? How can I reach people and help them learn that death is OK and that it’s not such a terrible thing?
I understand and share your frustration. Hospice, palliative care, and healthcare in general has become more about regulations, reimbursement, and policies and less about people, lives, quality, and personhood. People like us are becoming frustrated and ready to walk away rather than fight the system. SO---what do we do to make a difference?
First, we have to stay in the system. If all of us that see the bigger picture leave, then what will be left is the deteriorating, inadequate system. Change is occurring, not for the better, and if those who understand what hospice can be leave, there is no chance to slow that change. How do we stay and effect change? Use our voice, gently and with tact (we're not making enemies but changing patterns). Plant seeds of thought, how things can be done differently, added too, deleted, and restructured. Bring our knowledge, patience, and compassion to all we meet (professionals, patients, and families).
How can we stay and maintain our balance (and sanity)? Band together with like-minded people. Meet regularly to support each other and plan strategies for promoting quality, patient centered care. We and others like us need to "Be that one lit candle in the darkness." As Perry Como used to sing "If everyone lit just one little candle, what a bright world this would be."
Now, what else can we do? One of the only ways end of life can change is public education. If enough people understand what quality end of life care is they will demand that level of quality. The public needs to understand that just because you can provide certain medical treatments, it doesn't mean that providing those treatments are in the best interest of the patient. If people understand just that much, they will at least begin asking questions. The public needs to know there are new rules for end of life care, that caring for someone at the end of life is different than caring for someone who can get better. Education is our key.
There is another way you can play an important role and keep your passion. Start teaching. Contact community groups (Legionnaires, Junior League, Kiwanis), speak at church groups (Stephan Ministries, parish nurses, lay ministers, Sunday school groups), speak to local journalists, see if someone will write an article----become a voice for quality end of life care.
One of the tools of education that I suggest using in community groups, churches, medical communities, is my dvd kit NEW RULES for End of Life Care. The 25 minute film is full of education on caring for someone at end of life, yet it is emotion evoking and beautifully photographed.
Barbara, How do I deal with people that aren't compassionate with the death of a loved one.
We all grieve in our own way. What we feel on the inside is not necessarily reflected in our actions and words. What people see on the outside may not be what the person is experiencing, thinking, or feeling. Our world is called the “world of illusion” for good reason. We can say one thing and think a different thing. I can tell you how lovely I think your dress is and think to myself that it is the ugliest dress I have ever seen. What we think and what we say doesn’t necessarily match---illusion.
First, let’s not judge a person’s grief by their words or actions. We don’t really know what is going on inside this person. Second, grief is manifested in many ways--anger and depression being two of them. Sometimes grief comes on an intellectual level and we try to bypass the emotional level (although the emotions will come out somewhere). We sometimes deny our grief (that too will manifest somewhere, sometime). We grieve according to our personality. My personality might dictate that I not show anger, yours that you are enraged. Our personality will manifest itself in our grieving.
So --how do we deal with this “non-compassionate” person? We try to support them as they are. Be a presence if they will allow you to be with them. It isn’t what you say, there aren’t any words that can make a person feel better. It is your being available and supportive. Supportive doesn’t mean agreeing with. It just means listening and saying “I hear you.”
If there is a way to lend your copy of MY FRIEND, I CARE, my grief book, to someone who is "non-compassionate", you may find that it opens them to tenderness. They may have unresolved grief that it could help with.
Barbara, People have asked me when and how I can offer others your booklets.
With anyone, an acquaintance or close friend, you can always just say, “I have some materials I have found helpful, would you like to see them?” Depending upon your relationship with the person who is dying you might give the booklets to someone close to the patient and suggest they read them first to see if they feel comfortable with them.
A Time To Live is for a person with a life threatening Illness. Some people with a life threatening illness read Gone From My Sight: The Dying Experience even though Gone From My Sight and The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death are written for the family and caregivers.
When a person is not eating, is withdrawing, and sleeping more they are beginning the dying process (that will be two - four months before death actually occurs). This is the time to give Gone From My Sight to a family member. When a person begins sleeping with their eyes partially open and has the signs from Gone From My Sight of one - three weeks before death, give The Eleventh Hour. Then use My Friend, I Care: The Grief Experience as your sympathy card following the death.
None of this is set in stone, common sense and intuition are your best guides at times like these.
If uncommon symptoms arise during the dying process, I am happy to answer any questions here on my site or on my Facebook Group, End of Life Care and Bereavement. My "door" is always open to support you.
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