Click here for a 30 second video of Sue: Sue Hulley, Marin, CA, November 2011.
Sue Hulley, who died yesterday, was able to greet her illness and death with grace, compassion, and humor. So about a month ago I asked her if she would kindly write something to help the rest of us get ready for the inevitable. She managed to finish several articles, mainly on the practical side of things, with the help of her partner Bill and her son Tim. Here they are.
It seems very sudden when you hear that voice at the end of the phone, or coming right at you in the office, informing you that you have a life-threatening diagnosis. It’s hard for me to know which one I wanted. I guess having it on the phone would make it seem less real, give me a layer of protection, some time to control my responses.
Instead, it felt like Dr. Sowerby really got through to me. And it felt as if this really was harder for him than for me, although he didn’t say that. After all, he was the man who diagnosed me with pylori without a biopsy hoping, i guess, that i did have what causes 9out of 10 ulcers.
And this was the man who knew what lay ahead, in all of its gory, after the endoscopy. He knew that my life would never be the same. That, in fact, a whole new life – albeit probably of limited duration and often of maximal intensity — was beginning. His empathy told me as much. And I was so grateful. Let’s face it, bearing details of future pleasures is nice, but getting such a definite demarcation between past and future from someone who cares is so meaningful. You can start to take care of yourself and look out after the rest of the people in your life.
Taking care of business
If there’s one most important thing to do before tackling a serious illness, it’s to get your affairs in order. Of course, this advice could feel as if you’ve been told to get good genes, but you DO have control over this. Actually, you usually hear this phrase after you’ve been told about your illness; the irony is that you should have done this years before. But the usual American understanding is that if you get serious bad news, THEN you start planning. Although this attitude is understandable — based on our denial and wishful thinking — it can have serious negative effects on the loved ones around us.
So what affairs are we putting in order? In my life, there seemed to have been two areas, one the more practical, the other the more psychological / spiritual. In the practical realm, having a will, doing some estate planning, and communicating the result to those involved are all critical. That way, you enter any possibly life-threatening situation with everyone around you knowing what it will mean for them in practical terms. Hopefully, they all even agree among themselves about what these are, and their roles after you’re gone. If they can know the professionals involved in these decisions, so much the better; this can transform them from isolated individuals into a powerful team working on your and their own behalf.
Having covered these knotty matters, I should mention the easy, carefree aspect of your job — human relationships. We all have our own set, with its complications and intricacies. And most of us, myself included, know that every relationship that went west was because of the other person. However, it’s a good idea to wash as much of this laundry as you can before you hit the skids. And, since none of us knows when that’s going to be, I would advise you to start ASAP. Of course, you may be reading this having already received your diagnosis, or already involved in your dire situation. But you could help your loved ones, or survive your illness, or possibly you don’t have the bad situation yet; and I hope for your sake, one or more of these is true. That would leave you totally free to follow this advice.
In addition, it’s a really good idea to find some tradition, practice, belief, or activity that fulfills your spiritual needs. It’s more important to have one, than what it is. That way, when the news comes, you’re not just one more deer in the headlights. For example, when someone asked me, “When you got your diagnosis, what did you answer when you asked, ‘Why me?'” All I could say to her was that that thought had never occurred to me. Because Buddhists believe that we cause our own destiny through the millions of thoughts or actions we have over our numerous lifetimes, I don’t view events as happening TO me, but as coming FROM me. This means that I both caused this present situation, in this or another lifetime, and that it is extremely important for my future how I respond to it.
This practice is a resource you can draw from, throughout whatever lies ahead. Of course, it CAN be developed after your diagnosis, but because of its timing, it could be suspect. If this happens for you, be sure to search your mind very carefully about your own motives, and upgrade them as much as you can.
While exercising my arm patting myself on the back for my excellent grasp of taking care of business, it suddenly occurred to me that something had been left out – who’s taking care of you all this time? And it occurred to me that even if you haven’t done any of the things I recommended previously, the fact remains that we all need someone to take care of us. Actually, this is a pretty interesting area, because it involves personal relationships, possibly your loved ones, financial issues, and, depending on the expertise of your caregiver(s), help with solutions to all of the issues we’ve talked about up until now. For example, my primary caregiver is also able to deal with my finances by paying bills and such.
One place where people often start is to consider your practical living situation, and what physical needs you might have. Take a couple of inventories – what support system or resources have you already built up, and your remaining needs if any. Even if you are well equipped to handle your current situation, plan for the future, when your needs could increase. AND do it sooner, don’t wait until it becomes an emergency. For example, you might have a great cleaning lady, and she might know other people who could do related household tasks. Or, where we live, there’s a pool of Fijians, who often move from household to household. (They are especially popular because of their dispositions and the fact that many of them are quite strong. Given how hard it is to find affordable hoists, they have saved many the back of a less robust caregiver.) So get your resources set up for the inevitable ahead of time. Of course, your inventory of needs would depend on your specific situation.
Interacting with people regarding your illness and evolving situation
It would be a good idea at the very beginning, while you still have a lot of energy, to make up email groups of your various communities.
Interacting with doctors
In the past, talking to your doctor has typically meant listening to your doctor. But times are changing. We as patients are being encouraged to be informed consumers, and to take a more active part in our treatment. What this means for you and your doctor is that rather than being a one-down participant, you are in a collaborative partnership.
However, there is no doubt that you are much less knowledgeable than your doctor in the area of your illness. So it’s a good idea to do some general research and learn as much as you can about your disease and its treatment, before you meet. Additionally, it’s critical to take somebody to your appointments with you, to take notes and ask questions. Also this gives you someone to discuss your situation with in an ongoing way, based on the same experience.
It also helps to make a list of questions to ask the doctors. For example, “Given my kind of cancer, what are the expected things that might happen at each phase, and what kinds of things can my caregiver(s) and I do ahead of time, to counter each of these?” Also you can ask your doctor of any item along the way, “Why is this necessary?”
If your doctor can’t tell you anything without using Latin terms, it’s time to get a new one. It’s really important to see how you feel, being with your doctor. As when you meet any other person, it’s important how you feel about your relationship. With one of my doctors, I never felt I could say, “MY oncologist”. You want to feel that this is your doctor in a personal sense, fighting for your personal interests. With this particular doctor, I always felt that he came in and just read my chart. Anyone can read your chart, but you want someone who cares. If this is not happening, you CAN ask to change doctors, or get a second opinion.
Sometimes people get embarrassed about asking questions from doctors, but don’t forget that YOUR health is the goal here. So the doctor is working for you (whether they realize it or not). According to the HIPAA rules, the patient has the right to get all the information relevant to their situation. This means you can ask for copies of any of your test results, the analysis, and any other medical notes. For any tests that are taken, you can ask why it is being done, what the possible outcomes might be, and what those results would mean.
If you go through your treatment not asking, you’re more likely to feel like a deer in the headlights in each meeting. Or even worse, when looking back, like a mushroom (kept in the dark and fed manure).
I am so grateful to Sue for writing these articles for us in the last few weeks. She also had more articles planned, to do specifically with spiritual practice, but she ran out of time to write them down. Later, however, I can try to relay some good conversations we had in November on the subject.
Bill, Sue’s partner and main caregiver, also contributed the following from the caregiving point of view, for which I am also very grateful.
Caregiving might seem like an easy task, but the routine and stress builds slowly and imperceptibly. I was blessed with a friend who had “gone through it”. We could talk openly and frankly about the process, the ugly parts and the end — good and bad. I hope you, the reader, can find such a friend.
Now to the job at hand.
No matter how many ups and downs there are, the path may very well be downward. The word again is imperceptible. Because many processes are imperceptible, you need to build up an intellectual wall against complacency. If you think something should be done, like talking to a lawyer, fixing a stair step, or writing a letter to an old friend, DO IT NOW. We missed a lot of opportunities by thinking we could do it later. Later never came.
When one’s relatives, friends and acquaintances find out about the diagnosis, they will immediately want to see your charge. For some, it will be what we call the “dead flower” visit – one time with flowers and very awkward as no one wants to talk about what might happen. Early on for Sue, she rejected many of these visits but was happy to talk on the phone. As time went on, the “Rules” changed. Make sure that all visitors, by phone or in person, understand her current limits on time, people and time of day. Do not waver from your rules. When in doubt just ask the patient if you can and live with the answer.
Accepting gifts of time and food
Many people will volunteer time and food. One of the most difficult things for me was to find things for others to do and especially to cook since the nature of Sue’s cancer made it very difficult for her to eat.
As you go on, you should make up a list of things others might do. They need not be totally useful and may also be menial. You will be surprised at what you can come up with if you give up the notion that you are the only one who knows what is needed. In fact, even if it doesn’t do you any good or save you any time, it may be good for the giver. And, don’t forget afterwards. There are many people to tell and personal items to gather and distribute, so outside help will be useful for this difficult task.
In our case, Sue’s son and partner were here for most of the difficult times. Therefore respite and physical health care from others (except Hospice) wasn’t needed; and we could spell each other. In most cases, respite help will not be as available as the offerers hope, so burnout due to lack of respite is possible.
You should use the respite care resources volunteered by others. Start early, it will be particularly useful to “train” caregivers so that you can trust them later when the patient is less able to communicate their needs and your respite needs will be greater.
As Sue got worse, the caregiving became 24/7. Few of us can deal with this, so we strongly advise making appropriate arrangements with relatives, friends or hired home health care workers. Remember, it’s easier to cancel help then to implement a strategy under pressure.
More food concerns
I suppose that there are cancers and chemotherapies that do not significantly modify what or how much the patient can eat. Sue’s chemotherapy greatly modified what she was willing to eat. And she suffered from temperature sensitivity called neuropathy during most of her chemotherapy. This was a constant concern as we would occasionally forget and give her (cold) tap water, which was painful to her.
As time went on, we were continually changing the food that she was willing to eat and the volume of her meals went down to essentially nothing. If there are favorite foods, then by all means, ask for culinary help. But be firm about accepting only the first unsolicited dish. From then on – food only by order. We let it be known that Sue liked Pomegranate sorbet. We never finished the deluge that showed up.
Finally, it is time to give up food strictures once you are in Hospice i.e. gluten free, organic etc. Let’s face it; what is the worst thing that can happen? That’s right, cancer a few years down the road.
The patient will be unable to perform functions that earlier on were simple and easy. The patient is even more aware of these limitations than you are. How frustrating it must be when the patient knows that he or she could do things before but now cannot. As you might expect, it was frustrating for me to watch her fumbling away trying to do some, for her, difficult task. But she did not appreciate unsolicited help. She needed to know that her capabilities had not all been taken from her. We eventually had to evoke a rule on ourselves that unsolicited help was only given when needed for safety. Sometimes it took a little patience as she fumbled. However, our relationship improved. When the time came that something was no longer possible, she was grateful to accept the proffered help.
Similarly, the empowerment of asking for what she wanted was well received. Sometimes we overachieved, but mostly it helped her spirits to be able to make decisions. Not all of them were what we wanted, but if you don’t like the answer, you shouldn’t ask the question.
Everybody has heard about a miracle drug or treatment from “Timbucktu”. Of course you will want to fly off there to get it. (One person who was trying to help did not understand the irony of recommending a “healer” who failed to cure his uncle!) Early on, decide which organizations/ therapists you want to go to and stick with that decision. We’re glad that we did that. As it was, before the end we had gathered over thirty drugs, supplements and a few exercise regimens.
If you read the above, there is probably little more to add. By all means send cards and e-mails. If you phone, ask if the patient can talk, even if it is the patient who answers. If you want to visit, ask if you can visit beforehand and how long you can stay. If you plan to bring something, ask if you may. On the other hand, when a visit is contemplated, ask if you can help by bringing or purchasing something on the way.
The Aftermath by Bill Ring
“It’s over!” That’s what I said to Tim and Meg when they answered my call. It was over for Sue, but not for the rest of us. We thought the pain of seeing Sue gradually fail would finally be ended. It was, but it was replaced by the thought that we would never have the ability to say and do the things we wanted to say and do before she died. In her last days, Sue didn’t care about many things we thought were important. She was focused on her next lifetime and the hope that it would be a good and fruitful one.
Grief is a many-faceted emotion. A turning point came when I realized that many of the facets had to do with me feeling sorry for myself. We always look out for number one, don’t we? Another facet was realizing that when issues she cared about when living were resolved after she died, she probably no longer cares about the resolution. That we could not tell her about them is simply another way to feel sorry for ourselves. When I realized that much of the grieving was turning into ways for me to feel sorry for me, I rejected them and things began to look up.
There were far too many times when Sue and I thought we could discuss and plan later, tomorrow. Far too many tomorrows never came. This is my main regret. Lesson for caregiver and patient: Live like tomorrow will be too late, because it might be.
Sue became a very picky eater. She blamed the chemotherapy, but when it ended, the food-fussiness increased. Finally, the light dawned on us. Food was her one remaining pleasure. She could control very little in her life. What little she could control, she wanted to control. When the realization struck, eating became a comfort and pleasure for her and food preparation a labor of love. Lesson for caregivers: Give the patient what she wants, “It’s not going to kill her!” – the disease will.
On the practical side, the Hospice form taped to the refrigerator was valuable in listing the things she did and did not want to happen to her during her last days. The form is blunt and thorough. Lesson: Fill it out.
One thing that chokes me up, (which is a form of grief I have not yet mastered), is being able to complete Sue’s last requests. I believe that I know what she wanted and it is a great comfort to be able to do it all. Lesson for caregivers: Make sure you know what the patient wants and plan to do it. It will be good for both of you.
For reasons that you do not need to know about, her estate was very complex. The ability to defer the tax paperwork is invaluable. Lesson: Use this time. By the time the forms must be submitted and the bills paid, one can deal with them more easily. But, there is another, more important lesson for the patient and caregivers: Read and reread the living trusts and wills. Things change and these directives must change to accommodate them. We also discovered many errors that were hard to rectify once discovered.
The final stage for me is building a new life without Sue. I haven’t mastered this yet, but if you don’t try, I believe you will be mired in your misery and that is surely NOT what she would want. Final lesson: Talk about the survivor’s life afterwards. Should you keep the house? How about a new significant other? Your relationship with the in-laws?
I hope the above will be valuable to patients and caregivers. I wish someone had given me the information in the blog you have just read.