Cancer Diagnosis and Hospice

harpeth

Last week, my LO was early Stage 6. He was happy and maintained some independence.

Then he fell and broke 5 ribs.  After 3 ER visits and poor communication with the hospital, I discovered yesterday while looking in his online chart that he has a 3.5x 1.5 cancerous mass in his neck with metastasis in his spine (C1 Vertebra). While I am furious that the hospital released him without notifying any of our family of his CT results, right now I am trying to process what this diagnosis means.  After talking with the rest of the family and his primary care dr, we decided to call hospice. Within an hour, they swooped in like angels and transformed our home into a place where we could give palliative care.  Last night was his first night in his new hospital bed, with his new walker, and his new bedside toilet. While it is still "home," it now feels like hospice, and we all know what that means.  Since my LO's multiple hospital stays, he has progressed quickly.  I'm not sure how much is Alzheimer's or the medication, but he is now total care, incontinent, and barely mobile. We have stopped cholesterol, high blood pressure meds, and his Aricept. 

In some ways, I am relieved that we have a diagnosis and that he won't die a slow death by Alzheimer's, but with the relief comes the guilt.  I usually deal with things by researching and consuming as much information as possible.  Since he was diagnosed with Alz in 2018, I have read every case study and medical journal I could find.  I have visited these forums almost daily (although I rarely post).  I suppose information gave me some sense of control in a situation which is totally devoid of control.  With Alzheimer's, I had a sense of a timeline--what to expect and vaguely when to expect it. Now, we have this cancer diagnosis, and I am rudderless.  Since we have decided not to pursue further medical assistance, I have no idea what type of cancer it it, how fast it spreads, or what to expect.  We have no oncologist--no one who can tell us what we are facing.

I live and work 4 hours away, so I don't know when I will need to ask for a family medical leave.  I know it is in God's hands and that He will take him when he is ready, but I feel so lost--are we looking at weeks, months, one year, three years?  I need to prepare myself mentally and emotionally.

Has anyone else walked this road of Alzheimer's and Stage 4 cancer/hospice who can give some insight?  I know everyone's journey is different and I can't predict, but I need something to keep me grounded and from spiraling.

M1

Harpeth, I am so sorry for such a sudden shock.  It is truly inexplicable how they could not have discussed this with you.  But based on what you are describing, my guesstimate would be that he doesn't have very long--a few weeks at most, maybe less than that.  I am glad hospice is there and I hope they can help keep him comfiortable.

notjolly

harpeth,

I'm facing the same road with my brother. Stage 4 prostate cancer and Alzheimer's we think in late stage 4 early 5 will get a test soon if I can get him to go to the appointment. I don't know which to treat first. Can't do anything about either so since I have to deal with the Alzheimers on a daily bases, I'm getting medication for that, so I can deal, and letting the cancer just do whatever it does. Doctors say there isn't much at this point they can do but monitor it.