Hello all, and thank you in advance for any advice.
Dad was thrown a curve ball over the past 3 weeks or so, finally received diagnosis lung adenocarcinoma. He is 83, in assisted living (moved June, adjusted, have 2 part time private duty caregivers who he just loves in evenings 7 days/week), alz dx over 2 yrs ago, seems to be pretty solid in stage 5, beginning to tip over into stage 6 at times. Cancer large, already compressing broncial tube. No complaints from dad, always "feels fine."
My sister and I, in agreement with his doctors, feel that he would have so much trouble with cancer treatment, we would like to allow him to move on with dignity and enjoy whatever time he has left, without weekly dr. visits.
(He took complete care of Mom, married for 54 yrs, with her battle with cancer, radiation, hospice. How much he remembers, I do not know. He remembers from so far back now many things.)
How to gently tell dad there is nothing we can do? Other than manage pain, be there for him, etc. I feel that the simpler the better the explination, but do not want to come across as I am the one telling my father what to do. I have already had to take so much away from him (house, car, banking, etc.) that it troubles me.

Hello Kamper, I'm sorry to hear of your dad's diagnosis. I think you and your sister have made an entirely defensible decision...to let him move on with dignity. I have to say, tho', if dad answers that he "feels fine" and as long as he's in no evident distress, why must you tell him he is seriously ill? Especially with cancer, which is such a scary word for folks of your dad's generation. Does he even remember he's been to the doctor for evaluation? Is he asking what did the doctors say? Many times folks on these boards have raised the question whether/how to tell ADLOs that their spouse or sibling or even a beloved pet has died. I kind of regard your question in the same vein. Most folks seem to think that the first question to be answered is: what is to be accomplished by giving the ADLO the distressing info? What is the downside to withholding the info? If you've made the decision not to treat, perhaps the main objective now is to simply lavish dad with love and affection and happy memories and find the best hospice partners you can so that you can ensure that dad gets top notch comfort care so that when/if the day comes that he begins to feel effects of his disease, he will suffer no anxiety or pain. I'm sure this is a very tough call and I'm sure you and your sister are grieving about this unfortunate turn of events. But still, I wonder what's the upside of telling a cognitively impaired LO that he is dying of the dreaded Big C? Best wishes at this difficult time. Regards, Beth in SC

Thank you Beth, I had thought about not telling Dad also. Maybe right now, the best course of action is no action, allow the circumstance to play out so to speak, and deal with any of the questions as they arise. He does not remember the OP procedure for the biopsy. And as I talk to more of my friends, not family, the opinion returns to dignity and quality of life, which reassures me that the decision not to chase treatment is the better choice.

Kamper, I'm sorry to hear of your Dad's cancer and AD diagnoses. You say that Dad has no complaints and feels "fine". I agree with SC Beth that there is no need to unnecessarily distress your father by telling him his cancer diagnosis. If you consult with his doctor, you may find that his course with cancer may be similar to his course with Alzheimer's disease.

My Mother, who did not have dementia, was diagnosed with lung cancer in January 1991 at the age of 69 and died 19 months later in August 1992 at the age of 70. She had 2 lesions in the lung, one of which was inoperable. She was advised to have radiation therapy, which she completed successfully. She was ambulatory and able to get about unaided for a brief time. My brother and I took our Mother to a cancer hospital and a regional community hospital for further oncologic consultation. No chemotherapy was available for her type of cancer but my Mother said she did not want to undergo chemotherapy anyway because she saw how it affected her friends who had had cancer. She said it "tore them up".

Later in the disease my Mother had a course of brain radiation therapy for brain metastases. The radiologist said she would have died within days without the radiation. This was approximately 15 months after diagnosis.

We consulted a holistic doctor who prescribed alternative and nutritional therapy. I credit the nutritional and herbal therapy with extending my mother's life for several months because she was not very sick until the very end.

My Mother remained at home. She eventually required low flow oxygen via nasal cannula. As she became weaker we were provided with 4 hr, then 8 hr, then 16 hr, then 24 hour caregivers through her private HMO health plan. She did not have Medicare.

My Mother was hospitalized for pneumonia twice, once in the ICU and recovered.

Although she was weak, she was able to feed herself soft foods, drink Ensure and juices, transfer to a bedside commode with assistance, and converse appropriately. She always said she didn't feel pain and she was on no pain medications. She had medication for hypertension.

Three weeks before she died my Mother was admitted to the hospital for further weakness and shortness of breath. We were about to transfer her to a different hospital for hospice care when she passed during the night.

If we had known about home hospice care we might have kept our Mother at home until the very end.

Of course, every patient is different, but your father might never be in great pain from his lung cancer diagnosis. In any case, hospice has come a long way and they can keep your father comfortable. I would encourage you to make good nutrition a priority in his comfort care.

Best wished in taking care of your Father.

Iris L.

Dear Kamper,

You have posed an important question and as you can see, have received some thoughtful responses. Your family has been through so much upheaval and I’m sorry for that. It seems that your father is a resilient fellow, considering he is still enjoying his life following the loss of his wife and an Alzheimer’s diagnosis. I agree, why throw a wrench in that by giving him upsetting news? Of course, if he didn’t have dementia, it might be immoral to withhold the truth. However, he couldn’t retain this information even if it was presented to him in the clearest way possible. This information would only frighten him, and may cause some type of catastrophic reaction, impairing his functioning. He could slide into a decline and not even recall the triggering event. It seems to me that it is a kindness to withhold this truth, and demonstrate the greater truth, which is that you love him and want to protect him.

I agree with Beth’s comment that this is similar to the way other distressing news is handled with a dementia patient. Family members have to determine what the person absolutely needs to know and why they need to know it. The choice to withhold information is never made with the intention to deceive, but to protect and reassure.

I’m sure you know that you and your sister are always welcome to call out 24-hour helpline to discuss this further. We can provide information and emotional support anytime you need us. Ask for a Care Consultant when you call 1-800-272-3900.

Sincerely,
Kathleen

I agree with everyone else. Just shower him with love and affection, knowing you are doing the most by just giving him your love.

This way, you'll have no regrets about his last stages in life.

Peace.

Thanks again to all who responded. We have decided not to tell Dad anything at this point, and to address any questions that he may come up with at that time. All of my family (Aunts, Uncle, cousins included) does agree, so the support is wonderful and we are so blessed. The ALF that Dad resides in is so positive with the events, they are so willing to work with us to allow Dad to remain "at home" as long as he can or until his end. Thanks again!