I take care of my 84 year old grandmother. 2 years since it got bad, but she has lived with me for 5+. She has dementia, a type of blood cancer and requires blood transfusions (2+ units) every 2-3 weeks. We have good days, but quality of life is poor. She feels bad alot. She cries when I tell her she has to go to the hospital and says it's time for her to die on a regular basis. More days than not. She cries alot just worried she is a burden. With the dementia she is not the same person I grew up with and is totally dependent. In lucid moments she still tells me she doesn't want that (of her own accord), but won't accept that that's what she is - dependent.
This week I didn't take her to chemo. I just took her to the hospital for more blood (hgb 5!). I think if she was herself, she would want to end this. She has said it many times over the last 6 months, but of course forgets within minutes. When she is super low I give her anxiety meds. But have to lie to her bc she doesnt want to take them.
I am tired. She is tired. If I decide for her, NO MORE treatment, is that murder? Will the guilt destroy me?
This is so hard to go through. I take care of my 86 yo mother who has ALZ, dementia, kidney disease, possible colon cancer, fecal incontinence and is going blind in one eye. Her doctor won't let her go through chemo or any form of surgery because of the risk from anesthesia. I know my mom would rather be with her deceased husband and the Lord more than anything else. I have even prayed that God would bring her Home, but until then we take it day by day. Be gentle with yourself. Talk to a doctor or mental health professional for support. <3
It sounds like it is time to talk to her doctors about hospice. Hospice chooses to focus on the quality of life of a client and stop focusing on curing a disease. With hospice, she will get care to make her comfortable so she can enjoy the time she has. I would also suggest that you need some more people involved in her care - you sound like you're getting burnt out. Ask family members, friends, members of faith community and paid help to take some of the burden off of you. You need to be able to get 7-9 hours of sleep every night, 3 good meals daily, time to take care of your own health, and some time off to socialize with your friends or pursue something you enjoy,
I know someone who had a blood cancer and went for transfusions weekly, then every few days. She finally “No more.” She died with dignity 24 hours later. The transfusions didn’t give her a better quality of life, it just postponed the days God had written for her in His book.
You are absolutely doing the right thing and will be blessed for it.
Treatment is not going to give her (or you) the life she once had/or allow her to be the person she once was.
As a social worker, I want to say this: You might be feeling both guilt AND grief. Easy to confuse/interchange the two because they are both such intense feelings. Don't confuse the two. When you feel guilty, allow your thoughts to also revisit the times she said she didn't want to be a burden. When you follow her true wishes, you are not murdering her, you are honoring her.
As a daughter who had my own mom with Parkinsons and Dementia at my home for 5 years and had to transfer her to a hospice facility for 24 hr care, I understand the guilt, regret and confusion. I suffered every day until I realized my torment wasn't about if I was doing the right thing for her, but that I was already missing her and she wasn't even "gone" yet physically. It is normal to feel grief as we prepare unwillingly to say goodbye while we are trying to respect their wishes.
Lastly, In the end, your faith night comfort you that you really aren't omnipotent and only God can comfort her and love her unconditionally. You are not held accountable to a standard higher than God. Your intentions are what count. Focus on loving her whatever the day brings.
If any of this strikes a chord, think about talking further with hospice staff, a social worker/nurse where she goes for treatment, or a clergy person. YOU ARE OK - you are not crazy and you are not a murderer. You are a loving grand daughter who stepped up to help. So many of us support you!
My experience was similar to yours. In 2004, my dad at the age of 82, was diagnosed with Stage 4 Pancreatic Cancer from being a diabetic. We saw an Oncologist who told him, there really weren't very many options but if he wanted to try chemotherapy, they would go that route. When he said "ok," I was stunned. I was 41 at the time and had never heard of hospice.
I went home and l had my radio on the sports talk radio station that I'd been listening to consistently for quite awhile to get away from regular talk radio. I heard a commercial for hospice and called them right away requesting their informational packet.
As the day wore on, I was getting more upset about the thought of him getting chemo plus it would be hard for my mom and I to transport him and get him up to the 2nd level where the Oncologist's office was.
Early that evening, I called my mom and said I didn't want dad to go through needless suffering for what may keep him alive for just a couple of weeks. The next day, I went over there and had a talk with my dad telling him the same thing and told him about hospice. He was very receptive to my thoughts.
Later, the case manager came by and we were all on board and signed him up that day. It truly was the best decision made for him. They set him up in the living room of my childhood home and took great care of him. He too died peacefully just three weeks later with the hospice nurse, volunteer, my mom, husband and myself all surrounding him as he drew his last breath.
It was the most loving thing to do for him and I've never regretted it and was extremely grateful to them because he died with dignity!
To treat or not is not 'murder'. Many people of very sound mind choose not treatment when they know the facts about the treatment: Quality of remaining life versus quantity of days.
I highly recommend the book Rethinking Aging: Growing Old and Living Well in an Overtreated Society by Dr. Nortin Hadler, MD. We are doing way too many tests and treatments, particularly in the elderly.
It has to be her decision, but as you say, she doesn't know what she wants. I agree with others who have said that you should talk to her primary care doctor and hospice. God bless.
She would just ne home with medications to help her with any pain.
Then let her Dr know what she decided.
If I knew I was going to get better. Justice aittle ling taking chemo, I would rather have what little time I have not in the Hospital and being sick from the Chemo Treatments.
Let your mom make the decision on a good day when you know she is saying what she really wants.
Prayers
My mother is 94, with moderate dementia, chronic neuropathy pain in her legs & feet, and a bunch of other issues including constant complaining and dissatisfaction with life in general. I pray daily for God to take her, I honestly do. Why would I want to extend THIS life she's living?????? She's already outlived the average person by 16 years! Enough is enough, that's my perspective on things. If she came down with cancer, the last thing I'd do is sign her up for CHEMO!!!!!!!!!! And I wouldn't feel one ounce of 'guilt' for preventing her from going thru THAT level of added pain & anguish on top of what she already goes through.
Leave grandma alone now & let her live out her final time on Earth in peace & love, with you by her side and no more extraordinary measures to prolong this phase of her life. She's tired, and rightly so.
Wishing you the best of luck accepting that you have no control over the outcome here, and wishing you peace in the process.
Will you feel guilty if you choose to stop medical intervention? Yes. But you feel guilty over your grandmother's quality of life now.
There's no avoiding guilt. Some people feel less guilty if they feel like they "tried everything." Others feel less guilty if their loved one had a dignified and pain free death without the insult of pointless medical intervention (you can probably tell my feelings on the matter).
Call hospice and let them do an evaluation. Without that, you're not fully informed enough to decide.
I can't give you any definite answers as I don't know the prognosis of your grandmother's cancer. You should speak to her doctors if you haven't already to know this. Do you have a durable power of attorney for your grandmother (or is there a medical directive), if not you may need to go to court and get guardianship over her.
Depending on what her doctors have to say, hospice may be something to look into. Dad's hospice provider was a Godsend for my father and our family. For the most part hospice is covered by Medicare Part A (only things not related to the hospice reason aren't covered). There's nurse and nursing aide and bath aide from the hospice were very caring. My father was initially against the bath aide, but once he got used to it he adored his bath aide.
If hospice is not an option, I would recommend you place your grandmother in a long term facility to take over her care. And you should not feel guilty about this as you are already feeling guilty. The cost to you of caring for your grandmother is tearing you up. You need help and a break, especially if you are the only one caring for her. I tried to get over to my parents once a wee; the week I skipped my father just closed his eyes and died, something I felt bad about; I would have been there that day and been with him as he broke his earthly bonds. But I know he is at peace now.
It comes down to - don't make the cure (treatment) worse than the disease.