u/bonkette

A few weeks ago I posted about my concern with the CM initially when my MIL went on hospice. Since my follow up I have had no concerns and feel like my MIL's needs are being met.

Yesterday I received a call from the nurse that visited and was told the sore on her butt was a Kennedy Terminal Ulcer. We initially thought it was incontinence-associated dermatitis but it is something much more serious. In all of my research concerning the end of life stages I had not heard of KTU. According to the nurse she felt that my MIL was now in the transition phase and maybe has a week or so left.

I had no idea things would progress as quickly as they have. It is upsetting that there is no treatment other than providing comfort but at least I am relieved to know that this was not a pressure created wound or incontinence-associated dermatitis that we could have prevented.

My MIL went on hospice April 30 and lives in a nice AL residence. When I met with the CM I asked for portable oxygen so we can take my MIL out for walks as well as briefs. I also wanted a meeting with the heads of the AL residence so we could all get on the same page for the new level of care my MIL needed after returning from a hospital stay.

It is May 9 and none of that has been done. I still don't even have her email so I could schedule the meeting myself. As of yesterday I now text her what we discussed on the phone so I have a record of when I asked for things.

I believe the workload for hospice care workers must be extraordinary so I don't want to expect too much but I am starting to wonder if we went with the right hospice company.

Looking for this neon green.

TL/DR: My MIL was given a 12 month prognosis due to heart failure a year ago. Yesterday her doctor told her there was nothing else to do and she should go on hospice. She is quite upset by the news, especially because she has dementia and while she remembers the diagnosis the prognosis has not sunk in.

It was recommended that my 85 year old MIL get palliative care a year ago for her heart failure. The issues with her heart are numerous but basically she has a severe mitral valve stenosis which her cardiologist said cannot be resolved. She has dementia which makes her understanding and remembering her prognosis difficult.

After two recent trips to the ICU she has come back unable to breathe, queasy, and exhausted. She is on oxygen but she still seems out of breath. Before the ICU trips she had what she referred to as an inactive active life. She was very content with her life. But now she is filled with anxiety.

She sleeps most of the time and has no interest in eating. After a visit with her cardiologist he basically said to let hospice make her comfortable. She was quite upset over the news and with her dementia has difficultly remembering that she recently got a pacemaker.

She is absolutely not ready to die but it is inevitable. She is in an assisted living residence that takes wonderful care of her. My biggest concerns are her worsening anxiety and her difficulty breathing. Also, while she has a DNR in place, she says she does not want to die. So we agreed to no CPR, no tubes, but shocking her heart and medication is okay. She also does not want anymore trips to the hospital.

I am calling the hospice care center tomorrow to set up a meeting and I hope they can start getting her more comfortable.