This is just a quickie post. The other day on facebook a friend was asking what sorts of things make good gifts for a person with cancer, and that question, combined with my own ruminations, is what prompted this post.
I will likely NOT think of everything there is to say, because every cancer patient is different and there are so many types of cancer and so many different treatment modalities with new ones coming available every day.
But here is what I know:
Cancer treatment is time consuming. It takes time and energy and often there is a need to travel to go see a top oncologist, to receive chemo infusions, immunotherapy infusions, or radiation treatments. Both the patient and their caregiver will be traveling. They will be sitting in waiting rooms, they will be waiting. And waiting.
They will need to smuggle food in. I’m just saying… ( remember one time I had not had lunch at it was pushing 3 pm before we finally saw the doctor…and I was very pathetic. Usually snacks are available, but I have extensive food allergies. After that day, I did a better job of planning ahead.
Items I frequently used on our treatment days: thermos full of hot food for each of us. Books, journal, laptop.
Hospitals are always either too cold or too hot…but mostly cold, I think. And Chemo makes a patient even colder. A loving gift of warm stuff is always welcome: wool socks, ,mittens, hat, shawl…hoodie. Chemo and radiation and steroids can break down skin and make it very sensitive, so make sure that the gift is SOFT.
Travel chapstick, lotion, carmex…that sort of thing. Because cars have dry air, waiting rooms have dry air…everything is dry dry dry…and cold, or overheated and skin can just get so darned chapped.
A cancer family needs an Instant Pot. Those oncology days are long and busy and tired. That IP was a lifesaver so many many times when we were going back and forth to Louisville.
A cancer family might need dining out gift cards. Because travel and low energy means there might be more restaurant meals than desirable.
A cancer family might appreciate a squad of people coming in to do some basic cleaning, or a gift certificate for a maid service.
A cancer family might appreciate an anti nausea gift bag that includes Quease-Ease, some anti-nausea wrist bands, ginger tea bags and all natural peppermint gum. This could be for the patient or for car sick kids who have to get dragged on trips to the doctor.
A cancer family might need babysitting.
A cancer family might need godparents or trusted friends to invite the kids into their lives on a more regular basis.
A cancer family might need visitors who won’t get offended if everyone starts having a melt down and they have to get asked to leave. Or visitors who are willing to only visit for a very few minutes because the sick person is too tired for any more than that.
And a cancer family might need people to hang in there with them even after the disease has stopped being new…because cancer is a long haul (except when it isn’t).
I know I have left many things out. But I hope this list of ideas will help someone care for a cancer family in your life.
Sadness and grief are definitely not the same thing.
They are different the way ice and snow are different from one another. There are some basic similarities, but sad is fluffy and soft like snowflakes (sad can still be an avalanche, it is not benign) whereas grief is like ice…it is large, it will leave you knocked out and bleeding when it falls on you from above and it moves through your life with glacial slowness, and can cause you to slip and fall in an instant. Snow and ice: Sadness and grief. Often occurring together. But not quite the same thing.
It is very cold outside today.
It is my experience that grief can coexist with joy. Grief can even coexist with happiness. Like sunlight that shines on ice and reflects it back. Like ice covered trees sparkling in the winter sun, breathtaking in its beauty, the grieving soul experiences these moments of light.
So if I seem to be full of joy, maybe pause and notice the grief-ice reflecting the sun.
And if I seem to be cloud wrapped and dumping precipitation, know that I am blanketed in that snow-sadness.
I remember so clearly the night my husband had his first focal seizure. We were sitting in the den, each of us reading quietly, and I asked him a casual question. I looked up to his silence and found him with a shocked look on his face, moving his mouth and jaws but unable to answer my question. I instantly grew concerned and realized something was going on. Something medical. Something bad. “Can you talk?” He shook his head no. “Can you move around?” He stood up to show me. “Move your right arm. Move your left arm. Move your legs.” He could still move all the parts of his body, both sides, but he couldn’t TALK.” After a couple of minutes words started to come back. Slowly. The right side of his body was tingling, and the right side of his face was numb. Soon we headed to the emergency room. I parked the car, while he walked in under his own power and said “I think I just had a mild stroke.”
If you ever want quick attention in the emergency room, present yourself with stroke symptoms. By the time I parked the car, I was joining him back in triage where he was being whisked into a bed. He was promptly whisked in for a CT scan and after that we promptly saw the doctor. There was a visible lesion on his brain. Next, he was promptly admitted to the hospital that night and given all the appropriate medications for a person who had had a stroke. The next three days were spent with a team of doctors trying to figure out WHY he’d had a stroke, because he was not at all the typical stroke patient, being young and fit and thin with zero blockages in any of his veins or arteries anywhere in his body. One doctor on the team saw things differently: Not a stroke, but a possible brain tumor.
It all started on September 30th. Between then, and the day before Thanksgiving, he was in the hospital those first three days, had numerous appointments, MRIs and eventually a biopsy surgery. The day before Thanksgiving we got the diagnosis that he had Glioblastoma Multiforme, terminal brain cancer, and that there was no cure, just treatment. He would be a cancer patient for the rest of his short life. He was going to die.
I spent Thanksgiving Day alternating between food, and weeping in my bedroom. Scrabble, and weeping in my bedroom. Pie, and weeping in my bedroom.
And I became the family grief bearer.
Because of the nature of his illness the tasks of caregiving crept up on me slowly, as he was not immediately disabled by his illness. Because of his seizure, I instantly became his driver, and the only driver in the family, so that was a big change which waxed and waned and waxed again throughout his cancer years relative to seizures and surgeries. Other tasks increased and fell on my shoulders as he got sicker, had surgeries, electrical field therapy treatments, and as he was constantly run down from his chemo and radiation, and then finally as he lay dying. Those nitty gritty tasks are perhaps for a separate story…. But at first the biggest burden that got dumped in my lap was an emotional burden. I became the grief bearer. And I was the person who helped my children with their anticipatory grief.
My sweet husband changed into grumpy sad angry distant husband. He wanted nothing to do with my grief. He would actively leave the room if I entered it. He avoided me. He worked. And I cried even harder because dammit, he was DYING and how could he reject me like this when all I am is just so very very sad that he is dying? I felt like I lost him twice or thrice: I lost him to the cancer. I lost him because he rejected my anticipatory grief, and then I lost him when he actually died. Now, of course as all things in life are messy, this was so very very messy too. We had our bad moments, but we also had our very good moments. We struggled and we tried, but as the caregiver spouse, I was on SUCH a different page from my dying husband.
It hurt him when I would look ahead and ask for his advice about what I should do after he died. I wanted his advice because I wouldn’t have it for much longer! But perhaps I was asking too much, for in wanting his advice about what I should do after he was gone, he felt like I was wishing him away. In actuality I was trying hard to cling to every last scrap of him that he could give me before he vanished away from me. It was so hard.
Becoming the grief bearer meant we were living in two different universes from one another. His focus was on fighting as hard as he could, living as long as he could, and using his diminishing energy resources as well as he could for as long as possible. His focus became his job and the way that he showed love to us, his family, was by working. He didn’t have a lot of energy and it ALL went to his job. He would get back to work within two or three weeks of each of his brain surgeries, absolutely insisting to his surgeon to give him clearance, even though he was having to re-learn how to speak, code and type each time. I believe now that his active rejection of the grief process and his active embrace of denial was absolutely the only way he could cope. I have come to see his choosing to focus on work for the love that it was. In so doing, he provided for us then and now. But at the time, it felt really really bad. It felt like I was left alone with my grief, and on an emotional level it felt like he was already gone.
He grieved too, don’t get me wrong, but mostly he embraced denial as hard as he possibly could up until about three months before he died. And this, I think now, was necessary at the time. He was the fighter and I was the grief bearer. That was a necessary division of labor which enabled him to fight longer and harder than he otherwise could have fought.
And I wonder if this idea of being a grief bearer would be helpful to someone else whose spouse is dying. Perhaps this is one fundamental element of spousal caregiving in a terminal situation that we need to talk about. Because caregiving, although a very physical and practical thing, also has emotional and spiritual elements.
At the very end of his life, when words were failing him and he was slipping in and out of coma sleep, he handed me his prayer rope and said “pray for me”. I knew he didn’t mean I should pray to God about him, but that I should use my body and my words to pray in his stead as his agent because he simply could not.
And that is what a grief bearer does, too: I grieved for him…both for the coming loss of him, but also in his stead as his agent, because he could not.
I can only see this in retrospect. So I hope that sharing this idea helps someone.
I have been gathering answers to the following survey questions from volunteer facebook friends, and I would like to open it up to any readers of this blog. So far I am seeing several categories emerging and some relevant themes, and I will be writing on topics that bubble up, as I gather more data. Feel free to send your answers to my email (see contact tab). Blessings to all.
What is your relationship to the person for whom you are/were caregiving? (parent, spouse, child, adult son or daughter, non-family member)
How long have you been (or were) you a caregiver?
How did the intensity of caregiving increase or decrease as time went by?
What specific duties do you perform to help the other person?
What is your greatest sources of stress, as it relates to your caregiver role?
If you could ask for three forms of help from others, what would they be, and who would you want that help from?
In your role as a caregiver, finish the sentence “I wish….”
How would you describe (without breaking privacy) your relationship with the person you are caring for?
In what ways does being a caregiver limit your life?
I have never been a caregiver for someone who has had dementia, but I am fascinated by the human brain and how it works. I have dealt with caregiving persons with brain issues, one due to brain surgery/brain cancer and my interest developed. And so the subject fascinates me. One day I was poking around on youtube and I came across these very informative talks by a woman named Teepa Snow. I will create a link at the end of this post, but using youtube, many more of her talks are available and she has a LOT of information to share.
In the future, I hope to create a section of this page that has a list of information resources, but until I figure out how to do that, the best I can do is tag this post. Seriously, go watch all of them. Fascinating. Hope this is helpful to someone.
Caregiving is an unsung and silent ministry that many of us participate in at some point in our lives. All of us have parents, and many of us have spouses and children and out of these familial roles comes the sometimes role of “caregiver”. As people age, often a caregiver is needed and that role often falls to daughters, sons, spouses. Sometimes a person gets sick and requires a caregiver, either temporarily, long term, or terminally. Sometimes parents fulfill a dual role of being both parent and caregiver to a chronically ill or disabled child. Sometimes parents continue caregiving disabled adults after their children are no longer children and the parenting years are ended, but the caregiving continues.
This blog is by a caregiver, for caregivers and about the ministry of caregiving. I will be exploring topics related to caregiving, with an special focus on caring for the persons who are the caregivers.
Caregiving is a stressful role, and it can be hard, draining and isolating. Caregiving is not something that can be planned in advance. One becomes a caregiver when a loved one suffers an injury, illness or old age, the timing of which is out of human control. But being a caregiver is part of being in the human family, and is chosen in advance, when we choose to love each other. It is my hope that by starting some caregiver conversations, a ray of light and encouragement can come into the caregiver’s life. We are not alone. We face a common struggle and carry a common cross. We can reach out and support one another. It is also my hope that this blog can serve to educate communities, pastors, churches, and families on how to see the caregivers in their midst and how to be supportive of them.