My mother had a cancerous brain tumor removed in December, 2019. Recently, she discovered that multiple cancerous brain tumors are back. The doctors say it is not good, and without treatment she has 4-6 months to live. She is going to try immunotherapy soon to see if she can buy some time. In the meantime, she is terrified of death and keeps crying and asking "Why me?" I am tongue-tied, and simply remind her of her upcoming drug therapy or hold her tightly. I know this is not fixable in any way.
Has anyone cared for a terminally ill parent or sibling? How did you keep the mood positive? What else can I do? I'm running out of ideas to distract her from the cancer. We can't talk about the cancer, because she gets hysterical and starts crying. A counselor won't work either, because she would never, ever go to one. Please help me.
I think you may have to ask her medical specialists if a trial of anti anxiety and/or anti depression medications can be tried with her.
Could you introduce a counselor as an “advocate” or “visitor” or “respite companion”?
Once she calms down a bit, perhaps she has a pastor or minister who she can speak to? Or you can buy a book called Proof of Heaven by Dr Eben Alexander who was a neurosurgeon who had a near death experience. He briefly died and experienced the afterlife and wrote about it in this awe inspiring book which I highly recommend. The best way to accept our eventual death is to take the fear out of it. If we're able to do that, then we find acceptance which comes with the realization that life is eternal. We just transition from one plane of existence to another.
Since you suffer from anxiety issues yourself, I hope you will be able to take care of YOU during this time of trying to help mom. You can't fix this for her....all you can do is try to help her come to terms with her own mortality.
Wishing you good luck and Godspeed, my friend. Sending you a hug and a prayer for peace.
I sure am sorry. There isn't a person out there with this diagnosis who at some point doesn't want to shriek "WHY ME".
I'm sorry that you're having to deal with this now. The thought of losing someone you love so, is hard. I know. Just be there for her, and let her know how much you love her and how much you appreciate her as your mom. God bless you.
Consider talking to her doctor about getting her on hospice and
(1) Advanced directives
(2) Will
(3) POA
(4) Estate planning
(5) Prepaid funeral or cremation
If you don't do these things trust me it will be a living nightmare because of the legal quagmire of death called probate. Even things you don't think about like home-owner's insurance if it is in her name will have to be converted to the current owner's name. If you do not have a prepaid cremation or funeral those funeral homes will gouge you. You MUST get these done--if you have not done so already--while she is "with it" to sign papers. Or it will involve attorney's and courts.
Death is a very expensive thing.
After her passing I asked my Dad if she had been afraid of death. He told me that she rarely talked about it but, that on one occasion towards the end of her journey she approached my Dad and starting sobbing, she told him she was very afraid. He told me that he went to her and held her. He told her not to worry and that it will be ok and when the time comes she will be fine and to not be afraid.
When he conveyed this to me I instantly felt a peaceful calm come over me and I imagine that is how he made my Mom feel too.
He acknowledged the inevitable and did not skirt the issue. He tackled it head on and kicked deaths ass!
We walked that difficult journey with my mother and my sister, both diagnosed in the same year although my sister was diagnosed first. And her precious and loveable Chow Chow also was diagnosed with stomach cancer during that period. There's so much that could be written, but I'd like to share just some experiences.
1. Rally your friends; my sister's and parent's friends helped in whatever way they could. One friend visited, then would take out the garbage, and would also purchase items my sister needed. Sometimes they took my sister to chemo treatments. My parent's friends helped in similar ways.
We had decided that at Mom's age we wouldn't want her to go through chemo, so she just took some anticancer meds. That is NOT a criticism of either you or your mother though. Every situation is different. My mother was already tiring of age related medical conditions, and we felt that adding chemo would be too challenging.
2. Focus on the bonds you've created over the years and let your diagnosed ones know how much they've contributed to your life, and how much you value them. I don't have proof or citations, but I think end of life produces reflection and questions on self validations. Help them realize they are good, worthy people, who've helped others and their families, and will be remembered for those kind hearted actions.
3. Play their favorite music, especially when they become restless and can't sleep. One particular night both my sister and I just couldn't relax, so we put on a CD of waves gently lapping on shore. It was very soothing, and almost hypnotical in the rhythm of the waves.
4. Consider exploring Gilda's Club, even if you don't join and participate. I didn't discover its value until after both my mother and sister were gone, and I wish I had learned more about it earlier. It is a gut wrenching experience to go to specific meetings though, such as those battling different types of cancer, as everyone there has some relation to cancer. But it's also supportive, in many ways more than friends b/c many of the Gilda's Club members have cancer, while friends, family and neighbors don't necessarily have that horrible experience.
5. Pay special attention to what someone can or can't eat. My sister at one point only wanted good juices; she just didn't have the appetite for anything else. That was a challenge as she was losing weight and strength. It was a challenge I never could conquer.
6. Make arrangements for everything that needs to be done, including trips to the infusion center, someone to stay afterward, especially during the initial chemo treatments, as well as radiation. Even if you're not in a cold weather area, carry extra survival gear, especially blankets, water, mittens, scarves, and of course a charged cell phone.
One frightening experience was when my sister had a "bacterial shower" as it was known then. Apparently even a tiny amount of bacteria can accidentally enter the body in the post chemo flush, and cause rapid reactions of violent shaking and decreased body temperature. That happened once; fortunately my sister was a nurse and recognized it, so I rushed her back to the infusion center and she was treated, wrapped up, and we stayed then till the reaction stopped.
Post chemo is not only vulnerable to physical weakness, but it's also a very lonely time, and just having a family member or good friend there, w/o conversation, can be comforting.
7. Consider limited visitation and interaction; it's difficult to try to engage in a conversation when someone is exhausted and depressed.
Overall, I think just being there is comforting.
Stage 1 - Denial - can't believe reality
Stage 2 - Anger - frustrated and outbursts about situation
Stage 3 - Bargaining - doing anything in hope of different outcomes
Stage 4 - Depression - sadness and mourning loss
Stage 5 - Acceptance - finding peace with situation
Trying to keep your mom or yourself positive all the time may not be helpful. Ask your mom how she feels. Allow her to "feel her feelings" and let her be able to share those without judgment or trying to "fix" them. Gather family and friends who can be those good listeners and strong shoulders for you and for her.
Since you are concerned that your mother may be running out of time, consider engaging in activities that create good memories. Do things together that you both enjoy. I always am thinking about how can I engage all my senses: touch, smell, sight, hearing, and taste in activities that I can enjoy with another.
My husband likes dancing while my mom prefers walks along the beach or in the woods. My husband prefers spicy flavors while my mom prefers bland food. My mom loves lilies while I prefer roses and carnations. My husband prefers disco music while I prefer contemporary Christian artists and my mom loves the old hymns. My mom and I play Solitaire and Bananagrams together. My sister does crossword puzzles with my mom. Hopefully, this will spark some ideas.
We prayed every day for her Healing. It seemed to help her s lot just getting closer to God by reading, listening to Cd's and music.
But just because she has been TOLD that she is terminal, does not mean that she may not outlive others who have not been given such a diagnosis.
One doctor told my friend that predicting how long a person has to live is the Height of medical arrogance!
NO ONE knows that timetable. People beat the odds all the time.
There is a book called, "Close to the Bone", about facing life threatening illness.
It's written by Jean Shinoda Bolen, a Jungian analyst, and it gives beautiful case studies of people with serious diagnosis.
Essentially, it addresses the terror that a person initially experiences and talks about how they might understand and take a different view of the situation and their own feelings.
When I had to face chemotherapy, I was terrified.
A friend gave me the book and the first few pages turned my terror into resolve and gave me an understanding of what I felt and why.
The book said, when you are faced with a situation that you feel you simply CANNOT endure, and you have no choice, your Ego has come to the limits of its ability to guide you. (That's the part that's terrified).
You now have to drop down into Spirit, a wiser and steady part of yourself, and trust THAT part to take over guiding you.
You will make a connection with a very deep part of yourself, where you will meet and claim whole parts of yourself that you never knew existed. And you will emerge from this process more whole than you've ever been in your life.
This book changed the whole complexion of what I was about to embark on. I realized that I was going on a journey with my own Spirit and I was going to gain, not lose, in this process.
It may sound glib to say that this changed terror into excitement, but that is truly what happened.
I went , in a matter of a few minutes, from terror to a profound send of anticipation and confidence that this was going to be OK. Better than OK.
I hope this helps you both.
My dad had had cancer twice before-- at age 19, age 65, then his final time at 88. None were related to each other. When he was given his diagnosis, he turned to me, incredulous, and said, "This is the first time anyone ever said I could die of cancer." It literally had never occurred to him that it could be a death sentence.
He immediately got to work, and we got the rest of his affairs in order. Then he turned to two tasks --completing his autobiography (really a bunch of random memories he wrote down, not an edited book), and he started contacting friends and family to let them know how much he loved and appreciated them.
That was my dad, though. He just decided what he felt was important, and he took care of it. His doctor told him he could have months or up to a year, but privately the doctor told me it was likely a month or two. My dad wasn't going to waste precious time mourning what he wouldn't have. He said his only regret was not being able to see my son get married.
Everyone handles this differently, and I'd say your mom is going through the standard stages of grief. She'll probably get to a better place in her head, but you might gently tell her that time is fleeting for any of us, and if there's anything she wants to do or say to people, now is the time. Ultimately, how she spends her remaining days is her choice, and it's what you'll have to accept.
My dad did ask me one night what happens as someone dies, because he'd never been with someone at that time. I had, so I was able to tell him that he'd go to sleep before he actually dies and wouldn't know. Death is a slow process, with the heart beating more slowly, the breathing also slowing, and eventually they just stop. It brought him comfort to know that, so perhaps be ready with some of that information if your mom asks.
I agree with others, stop trying to be positive, there is no point. Cry with her if you want to. She is not going to live. If she has a religious belief, that can be a comfort. I have held the hand of my father, mother, 2 aunts, a sister-in-law, and several close friends when they died. I like to think of it as passing from this life to the next.
That's quite a lot with which you are dealing!
I for one cannot understand why anyone would want to prolong the life of someone with Alzheimer's dementia whose already 84 years old.
Palliative care nurses are some of the most compassionate people on the planet. Perhaps your mother is afraid of a painful death and a consult with palliative care is in order.
You cannot "keep the mood positive" because that would be disingenuous and dismissive of her very real fears. It's also a huge burden to put on yourself when your mother is BP/NP.
Perhaps I read it wrong, but my impression was the mother is the one who wants to try the immunotherapy treatment "to see if she can buy some time."
There's also no harm in trying sometimes to cheer each other up. That's not being disingenuous or dismissive. The only alternative is to play Eeyore all day every day - that would get old quick. Finding some joy in simple things, watching a squirrel scurry around in the yard, watch birds flitting about (maybe put up a feeder to entice them), waiting for the sun to peek out after a storm, taking a nice walk on a pleasant day, watch a favorite funny movie or some well loved old classic you both enjoyed, playing some old board games, some indulgences with snacks and tea... the little things in life.
Yes, there will be sad moments, angry moments, etc. I'm not saying wash them away, they are legitimate feelings and should be expressed. I'm only saying we can try to make happy times too, fun times, joyful times even, to build some good memories to cherish later.