jan

Thank you so much for all your kind thoughts and prayers. Your words have helped me in so many ways. I think you are right that Dad perhaps chose Christmas day. He knew how much my mom loved Christmas Day with her children and grandchildren, and wanted to be with her. At least that thought does give me comfort.

Dad was buried yesterday next to mom on a cold, blustery, sunny day. He was sent with military honors, and the graveside service was beautiful. I’ve witnessed the service with the gun salute, taps, and flag folding, but to actually receive the flag “on behalf of the President of the United States” was such a humbling and emotional experience I’ll never forget. His friends and family were all around to support us over the last couple of days, and it was comforting to know he was loved by so many. I provided the funeral director with photos of dad from long ago until his 85th birthday in July, and the result was a beautiful video of his life. It was so moving, and will be a wonderful keepsake.

For me, now, I am feeling so many things: relief that he suffers no more, a little bit of guilt because I don’t have to make difficult medical decisions any longer or see him waste away in the nursing home, sadness that he both my parents are gone, but mostly a kind of emptiness. The last five years, especially the last 12 months, have been consumed with nothing but his care. I am sure I will find plenty of things to do to replace the time, getting his affairs in order, for instance, but I just feel like it will be a huge adjustment getting some of my life back.

Just thought I’d add an update on Dad’s hospice care –

Things have been status quo. The fluid buildup that we anticipated when he left the hospital weeks ago hasn’t materialized. However, he has gradually weakened to the point of having to need help feeding him his meals, has tremors in both hands, and can’t speak more than above a whisper. On the positive side, he still remains pain-free. He eats his meals while in his wheelchair in the company of his friends in the dining room. His mental status is still being helped by the Xanax twice a day, to prevent anxiety. I visit with him daily at lunch to help with feeding, and my brother comes and helps at dinner. His appetite has been great, and he’s never eaten better. The hospice nurse comes by the nursing center twice a week, as well as a CNA. The weather has been great, so we can even get outside for some fresh air. Most of the times he gets his afternoon nap. If not, my brother will catch him with his head in his plate at dinner!

On a more sensitive topic, the worst and most humiliating experience for him now is toileting. He can no longer make the trip to the bathroom with or without assistance. He has the urinary catheter, and has to rely on adult diapers for the rest. He sometimes gets confused and will ask for help to go to the bathroom, forgetting that he is unable. Of course, as with any nursing home I’ve visited, patients sometimes have to wait their turns for assistance, and it’s depressing to see him having to wait for someone to change him.

When he left the hospital about 2 months ago, the doctors said he had “weeks” to live, so needless to say, we are amazed and happy he’s still with us. On the other hand, because he’s still with us, I can’t help wondering if we made the right decision about ending treatments for a “quality of life” approach. Is sitting in a dirty “diaper” quality living? I also wonder about all the chemo he had. He’s definitely weaker than ever, but since stopping chemo he’s had no further fluid building up in his legs or around the lungs like he had in the hospital. I am truly glad he’s not experiencing the symptoms he had with chemo, but I’m feeling confused as to why doctors use the terms “weeks” or “months” when they really don’t know how long someone will live. I could drive myself crazy with all the second guessing. I have to confess that I’m feeling a little guilty because expectations were that we only had a short time left, but is still cruising along very well, the selfish side of me wants to know how long he’s going to go on this way or, I should say, how long do we have to see him like this? What does the future hold for him? So many questions, with no obvious answers, of course.

I apologize if that last paragraph made no sense. I’m not making much sense out of anything these days.

Jan

Darla, thank you for your words of encouragement. This site has been so helpful to me.

As an update, I spoke with his case manager today. She met with him and it was decided to start dad on a very small dose of Xanax for his anxiety and depression. I have always been hesitant about these sorts of drugs, but when I saw Dad today at my usual lunchtime visit, there was a remarkable improvement in his mental status. He was more alert, less anxious and even smiled at times. He was tired after lunch, of course, and after a few minutes of “The Beverly Hillbillies” on the rec room big screen TV, he was ready for his afternoon nap. I’m happy to say that the nursing home has worked a nap into his daily routine, and his hospice case worker also agreed it’s important to stick to a routine, especially what he was used to at home.

One of his brothers stopped by as he got into bed. Unfortunately, it was a short visit as Dad drifted off to sleep. So I encouraged my uncle to visit earlier when he was still wide awake and better company.

He has been moved to a room closer to the nurse’s station, and the room is both brighter, and a tad bigger, and he has plenty of room for all his stuff.

Considering everything, it was a good day.

Thanks for all your experiences and opinions.

Daddysgirl, I feel for you and your horrid experience with nursing home care. I have heard other nightmarish stories similar to yours, and fortunately most of the really bad facilities have been closed down.

As far as tests to see why he is falling, yes, we could have more tests done, but we’ve made the decision to begin the hospice program, and feel that he has been poked and prodded enough. He began falling on occasion at home months ago, and this has gotten worse as the cancer has progressed. The cancer has invaded his organs, his platelets are low, chems are out of whack, and we are definitely beyond any PT to be of any use.

Federal regs do not allow restraints including rails on the beds. He has a sensor alarm, but as disoriented as he is, he somehow manages to remove it. He was moved yesterday to a room nearer the nurse’s station. I know it sounds unbelievable, but other than this issue of falling, this nursing home is the best of any I have experienced, and between my parents and my inlaws, I’ve experienced many. I sincerely believe that if they can protect him, this facility is a good match. I do not want to move Dad again, unless it is to the hospice inpatient center during his final days. I met with the nursing supervisor and the hospice nurse yesterday, and they have assured me they will do all they can to give him the attention that he needs to keep him safe. God, I hope so.