Voices of Warriors – caregivers





Miscellaneous thoughts


“An awful leisure,” Emily Dickinson once called what the living have after death.

Even so, I’ve found a million reasons to procrastinate on addressing the “end of life issues” topic that I know is a critical part of the journey for all of us, warriors and caregivers alike. Chalk it up to denial, I think. To analyze end of life issues is to admit a loved one isn’t coming back … isn’t on a short run for syrup to pour on pancakes or oil for the lawn mower, or (more reflective of the final days of Larry’s life) taking a late afternoon power nap in order to gear up for the nightly business report and Jeopardy.

As I sit in my office (a garage transformed with French doors), I’m like a Pavlovian dog. When I see Larry’s car go down the street (he died March 5, but his daughter is still here, preparing to put his house on the market), there’s a nannosecond when I wonder where’s “he’s” going.

And when his car returns, I find myself looking toward the phone. He always called the moment he got home from work, golf, or anywhere, so we could coordinate our plans. I know better, but that’s how it is.

The grasping family members who descended during the final few days of his life to run the show and see what they could snag, once he was all morphed out, have returned to their own lives, leaving only a couple of us to really miss him. Everyone likes to talk about closure, or getting through, or getting over, or putting events into perspective. “Let’s put this behind us,” we say.

My husband Jim died 10 years ago, and certainly Larry played a major role in helping me pursue those cliches. Except, in reality, we don’t ever really put these issues to bed.

What I (and no doubt others) have found is that loss is forever, it only
multiplies when another loved one dies, and there’s no getting around the empty feeling. Losing Larry, I also lost a link to Jim, since the two of us often laughed about highlights of our “previous lives” before our own became intertwined.

These losses play a big role in shaping what we become, and in goals we pursue in the future. I, for one, am going to spend more time with friends and family, and less time worrying about career goals and inconsequential irritations.

As Larry journeyed toward the end, we tried desperately to stop the beast’s process, or at least to slow it down. When he could find a patch of relief from the awful pain, we’d pretend the beast didn’t exist at all, and debate the most mundane things … Whether to fertilize the citrus trees in April, or wait until fall. Whether to order pizza from Papa Johns or Dominoes, and whether to add anchovies.

From a medical viewpoint, I now wish:

* I had kept a log of his medical appointments, what was ordered, and who said what.

* we had looked into hospice together sooner, back when we both hoped he’d not need it. Hospice nurses were wonderful, and Larry could have benefited from their entry into his life far earlier. Problems was, we never really knew where he was in the journey. The oncologist and his team were worthless at the end, and to be candid, pretty worthless all along. Most anything of worth that we learned came from the Cafe.

* Of course, it goes without saying that if either of us knew in 1998 what now is known (much through the Bladder Cancer Cafe) we’d be far more intent on seeking aggressive (or at least competent) medical treatment. All I can do now is tell virtually everyone I know that blood in the urine is not to be ignored, no matter how fabulous one feels or how unconcerned a g.p. seems to be .

Non-medically, here are things I wish Larry and I had done:

* Taken more pictures of us together. He snapped me, and I snapped him. But how I wish there were more of us together … not just on fancy stuff like an Alaskan cruise or a Caribbean getaway, but candids of us grilling hotdogs in the backyard or re-doing the base of my fireplace or cleaning out his carport or fertilizing his lilies.

* Gone on more walks, while he still could, because that seemed the easiest time for him to talk.

* I had been even more responsive when he wanted to discuss his demise. I tried offering positive information and avoided chirpy false hope. I also was forthcoming about arrangements I had made for my husband and, later, my father. But I never asked him specific questions about what he wanted at the end. Since I was not the wife, his daughter and I were not in a good position to deal with the take charge brothers and son who came sweeping in. Power of
attorney would have been good for me to have. Larry brought it up once, but I didn’t think it would be necessary. Was I ever wrong.

Anyone who witnessed the son out in the driveway demanding the keys to Larry’s house and his car, along with his pin numbers, and proclaiming “it’s my house now, and I’m making the decisions” (two days before Larry’s death, no less) might have a different picture. Actually, it was Larry who had the keys to my house and car, since I travel extensively and he was always in town.

* I sent him a shamelessly mushy Valentine card, (very unlike me) this year and was surprised when he seemed so pleased. So if I had all our years together to do over again, I’d have sent a gusher every year.

* More impractical stuff. Larry mentioned a couple of weeks before he died that he wouldn’t mind having some pineapple upside down cake like his mother used to make. I made a mental note to get going on that, but then we got caught up in appointments etc. His appetite had been great through the months even during chemo, but suddenly about Feb. 25, he lost all interest in food, even beer, and could handle only a few bites of anything. By the time I remembered the cake, it was too late.

My point: Whatever it is you want to do, do it now. The plateaus, combined with declines so sneaky they’re almost indiscernible, make us think there’s always tomorrow. Sadly, there isn’t.

After Larry died, I actually went to bed for a couple of days … again very unlike me. I certainly didn’t do that when Jim or my Dad died. Later analysis indicated to me that I had become somewhat manic in this whole situation. Driving to Naples (that’s two hours across Alligator Alley) to fetch him a walker when he could no longer use the crutches was silly, since Hospice provided everything a couple of days later. Clearly, I wasn’t thinking too straight.

In essence, to those who sense their loved one is nearing the end, I’d advise less focus on trying to ascertain “how much time is left” and more concentration on cramming in as much as possible of life’s little pleasures before it’s too late. A midnight run for Baskin-Robbins is not to be denied.

I am calm again, and suppose that it time to log off from the Cafe. But there are so many people who I am concerned about and who provide such inspiration that I think I’ll remain a lurker for the time being.

Warm regards, L


Barbara [Michael’s wife]
The most important thing was finding the right palliative care physician. This means finding a physician who has recognized that the patient is now in the Dying Time, and not still struggling to fight the illness. This physician would be able to work in a collaborative manner with the patient and family, respecting the desire of the patient and family to remain in control, trusting their observations and decisions, and able to recognize and accept the profound ambivalence which goes into every decision, and the fact that that ambivalence does not mean that control is being surrendered. The areas of primary collaboration will probably be around pain management and the degree of supportive care necessary. Family members or caregivers need to recognize where the patient needs to be involved in decisions and where the caregivers must take charge. This struggle often shifts, and can be the cause of some conflict at a time when no one really wants to be arguing. There is also a timetable of dying, but things often do not move smoothly and predictably.

Pilar [Russ’s Wife]

I don’t mind at all talking about it or you quoting me. This is such a
painful and long process for everybody that if anybody can get something positive and helpful about it I would share it gladly.

You are right. As the door starts to close on you and your love one …you kind of give up. I guess what you read is no longer something that applies to you and your family. You are so overwhelmed that you have to decide how to spend your time wisely…going to the site was no longer helpful to us.

We did work with Hospice. They were very nice and supportive. I find that doctors won’t tell you stuff if you don’t pull it out of their throats. I had to ask them point blank so I could prepare our son David (8 years old).

On a more personal note and I would say cultural note, let me tell you that I am from Colombia, South America. One thing I found it hard to deal, culturally speaking, was the way Americans deal with death. Throughout this 2 year period, everybody was always asking: what can I do to help?, we have your family in our prayers, etc, and overall there was a concern and support from everybody. The minute Russ died…that was it. People stopped talking to me. I have had co-workers who were always very very nice change to a no-talk attitude. They
do not know what to say or how to approach this. Latins are more open about it. We talk about it, people come and visit, etc. Americans, for the most part, are afraid to say anything to you … they do not know what to say, so, they don’ t say anything at all. That was a shock to me. I now kind of understand it. It is just odd to see people just say good morning the first day you are back to work and nothing else because they feel so uncomfortable. They’d rather send a card than give you a big hug.

I just closed on a house. My children love it. It has a beautiful pool
(a must for David and his dog 🙂 ) and it backs up to a beautiful lake where he can fish … and of course the dog can chase the ducks (she is a black lab) This house has been such a therapy for us. In addition to that I am getting things ready for my daughter to go to college. In a matter of weeks it will just be David and me.

Anonymous -G.
I am only talking about caregivers and terminally ill people. To me, there isn’t any “one” answer. Everyone is so different in how they approach this issue–the terminally ill as well as the caregivers. What works/helps one, will not work for another. We all come from different backgrounds and beliefs. Some people want to talk about death and others do not. Some patients and caregivers are stoic and others are on the other end of the spectrum. In many cases, having a strong religious belief doesn’t help the passing; in others, it does.

I believe that when it comes to death, there are the “lucky” ones and the “not so lucky” ones. The lucky ones have “known” that it is their time, are at peace and (it seems) have had some control. For example: My father, in fair health in his 80’s, was told that he had a poor surgical risk aneurysm. He chose not to have surgery and willed himself to die in less than a week. My husband’s grandmother, also in her 80’s, announced to the family that she was ready to go. She died the next day (of old age). My uncle did much the same thing only he went and visited several friends/family over the course of several
days and told them goodbye. One day he told his wife he didn’t need his noon medication. He took a nap that afternoon and didn’t wake up. None of these dear people were in that poor of health. My father did not die of his aneurysm.

My mother died of complications from Alzheimer’s. She wanted to die years before she did. Other members of the family and friends have suffered long illnesses with cancer. These are, in my opinion, the “not-so-lucky” people.

My mother-in-law fell somewhere in between. She told me that she was ready to go. The family would not believe me. They put her through heart surgery. One of the ICU nurses told me that my mother-in-law didn’t want to live and she didn’t (or knew it was her time); she died a couple of days later. I had a very interesting life and death conversation with the ICU nurse. They are good people to talk to. I’m not in a hurry to die but I don’t fear it. I had major complications following the birth of my daughter 30+ years ago. I remember hearing my blood pressure counted down to “I can’t get one”. I do not remember moving toward a light, however, I do remember being in an area of beautiful light with all of the feelings you explained below. Some have told me that this aura, etc., is a phenomenon of shock, however, I have talked to many people who have been in shock and they can’t relate to the experience–in fact they have expressed feelings of great panic. No matter what caused my feelings and experience. I do not fear death. I am so glad that I have been able to experience my life and watch my children and now my grandchildren grow up.

Based upon my own experience, I’m sure that I come with a different perspective but to me the most important part of caregiving, besides love and obviously care, is to LISTEN to the person who is dying. For those who are terminally ill, it is their death not yours, even though you feel like you’re going to die too. Try to talk about the subject as they may need to talk. If appropriate, let the person know that it is “okay” to go. I don’t mean for this to sound “cold” or like I’m pushing them out the door–far from it. I believe that the caregiver’s job is to emotionally ease the way–not pile on emotional guilt. No matter how hard it is on you, be aware of their wishes (not yours) and honor and emotionally support them whenever you can. That last statement is not meant to start the pros and cons of euthanasia. Rather, it is meant to say that I feel that we are very selfish to try to hold back a person, i.e., keep them on life support of any kind, who is so ill and/or in such pain.

Kathy K
I think it is important that caregivers, especially spouse-caregivers, let the patient know that he/she is more than just a patient. The patient needs to know that he (all “he’s” are “he/she’s”) is still lovable. He needs to be touched and caressed and kissed – physical contact and loving words, not just dry, clinical, medical care.

Medical personnel, like nurses and aides, can provide the clinical care. Spouses, parents, siblings, children must continue to show the patient that he/she is still lovable. Only they can do that. Home-health or hospital personnel can’t.

Kathy K. (R.N.) and long-term survivor (of brain tumors — “86,”90,”96
— of bladder cancer — ’98,’00,’02)

Kathy has pointed out something very important, how critical being touched is throughout treatment, and at all times during this journey. Studies have shown that being touched [massaged, held, stroked, etc] lowers the level of physical stress/distress. Kathy pointed out the important self-esteem issues, feeling loved, and valued, and being more than just a body. KG
While it would take me back to a terrible time I would not mind sharing some things with you. I had major issues with Mike’s treatment at the end. Mostly with the doctor who was treating him out here. She was not very understanding. Mike’s cancer has spread to the bone and the last several weeks he was in a great deal of pain. He tried to hide it but it was there. When we put him in the hospital he was being treated for various things. When this particular doctor discussed a DNR with him she was cold and uncaring. Mike did not want to deal with that and told her to talk to me. I was so annoyed at her attitude. She told me he was not facing reality. Granted he was not because of all that had happened to us. I told her to just leave the paper work and I would deal with it. My main concern was that he be made as comfortable as possible. When we discussed stopping some of the treatments she was annoyed that I questioned her. I had talked to a friend who has been a nurse for 30 years and I had concerns. The doctor acted like I was stupid and had no right to ask the questions.

Then at one point she told me Mike had only a few days to live. At that point I asked if he could be placed in a private room so that we as a family could have some alone time with him. She was nasty and said that would take space away from someone else. I had been at the hospital every day and could see that there were rooms that were empty. I was only asking for a day or two. As it turned out he died that night. The man in the room with him was recently diagnosed with almost the same thing. Not only was she inconsiderate of our feelings but also of his. Also, on the last afternoon when I went in to see him he was very restless. I spoke to the nurse who said she felt he had been restless all morning. I called the doctor and asked that he be given some medication to make him more comfortable. Her statement was he would be out of it if she gave him anything else. I could not understand how that mattered since he was not completely with it anyway and was not going to last much longer. I guess I was more annoyed because our experience with our son had been so different.

The hospital in Washington was extremely supportive and did everything possible to accommodate us. The nurses and doctors were caring and kind. I was very disappointed with the care here as compared to there. Hope I helped. Any questions – please ask. JoAnn

To JoAnn:
Thanks for sharing this. I did not know that so many extra hurdles were thrown in the path– and for nothing. Her negative attitudes and unhelpfulness added to the sorrow. What was her problem? She clearly was uncomfortable working with dying patients and families as people. I am sorry you had to experience that from a supposed helping

You asked what kinds of issues and resources might be helpful to address… A practical thought would be a check list of sorts to begin to connect with resources. An important emotional support to me as a long distance caregiver with a big family would be any thoughts on family supporting family. Right now my 6 surviving siblings and our spouses all seem to be on a different car on the roller-coaster that is my mother’s lung cancer. Heck, I think some haven’t even recognized that we’re on a roller-coaster! Mom’s on her 4th of 5 rounds of chemo given to shrink as much of the tumor a possible to extend her life so that she can enjoy how ever long she has. She’s done the DNR paper work, has good VNA services (she’s at home) – but while some of us are ready to look into hospice, others are still thinking all she needs to do is to get out of the house more to get her energy back! We’re not a family that does counseling well, although a couple of us do for ourselves… I don’t think we’re unusual so I’m sure there’s got to be resources out there. Thanks for the support.
Peace and good________, Beth


Miscellaneous thoughts

On Sat, 20 Apr 2002 21:51:43 Wendy writes:
I sat down to write something for you last week and ended up dredging up the excruciating experience I had as an 8 year old being told my father died, after the family had told me he was getting better all the time, and that he’d be home, lying all along. Anyway, I ended up depressing myself and I guess it was more of a therapeutic act than that of a serious contributor.

From: Karen
To: Wendy
This has taken me so long to get this page together– I am sorry for that-I guess because it also dredges up so much fear and loss. And it also shows me the PTSD nature of cancer treatment– and how much we shove under the carpet to just get through it all. A couple of weeks ago I watched the [his] final episode of ER– where Dr. Green stops his cancer treatment for his brain tumor and just realizes he cannot go on. He looks around at the ER and realizes he cannot do it — and all the lives that are attached to him/us/you– like you have 100 breasts like that Etruscan figure of Athena [or was it Venus] and 100 mouths sucking on your essence and energy … needing you for everything, and how at some point you just have to reclaim your breasts from all that need because you just can’t anymore, and you take a step back and just look at all you have been doing… I just burst into tears– like I haven’t since before the treatment began. I have come to realize that everything about possibly dying was what I did not deal with all the time I was in treatment. We have all been performing healing acts on this list– therapeutic acts — for ourselves and those we can help with our ears, advice and experiences. I am back to my 14 hours days– I feel fine-though I get tired sometimes– but it feels so powerful and healthy to be able to do it– but I realize that I am at risk of losing those hard won lessons of taking time for creativity and taking care of me.

Thank you again for sharing your own memories and Soulla’s writing– and I will get writing again. How awful to have been lied to at that time– it sounds like it was as raw as yesterday’s bruise.