5C's Que Pasa

First off I just want to thank all of you, my special readers for your continued support during this difficult time.  Your comments and emails mean so much to me as do the few phone calls I have received.  Even though I don’t always reply to your emails or comments, it really does help to read them.  Mille gracias.

So in a nutshell ( maybe a big nutshell ) I will give you the latest info on Dad, but first a recap.  He fell early morning on August 2nd and was brought to emergency for a cracked head.  While there it was discovered his heart was in very poor shape.  After a month in cardiac care it was decided that nothing could be done to help his heart and that he had two months plus ???? to live.  Palliative care rejected him as you need to die within the allotted four month period.  Cardiac care discharged him and a call went out to the hospital for any MD to take him on as a patient.  He remained in cardiac care for over two weeks until a bed in a medicine unit ( catch all for whatever doesn’t fit somewhere specific ) was available.  The plan was that he was to wait in this unit until he could be transferred to a nursing home.  The wait list is huge as there are not enough facilities to meet the growing demand.  He would have a wait of a few weeks to over four months.  Will he still be alive by then?

Last Tuesday we received a one hour notice that he was being transferred.  Some of the cardiac staff warned me that the unit he was going to was pretty bad, they were preparing me.  It was worse than I could have imagined.  I can only wonder what was going through Dad’s mind.  I did the best I could do to set him up but there just wasn’t any space to put his few things.  No room for a night table, his walker or a chair for him to sit on.  Did they expect him to spend the next few months just laying in bed?  This unit was in the oldest part of the hospital.  As I followed the stretcher that Dad was on ( pushing his walker ), I felt like I was in a horror film.  The building was so old that 90% of it was closed off with pieces of wood and signs, do not enter.  The walls are crumbling, the elevator is not something I would normally step into, the floors are scared and permanently dirty with embedded crud, everything is dark and dingy and the smell is anything but pleasant. Once I had Dad settled in bed and unpacked I discovered the next horror.  There were no TV’s in this unit as it was too old.  There was one TV in the lounge that he could go to but he would not be able to hear the TV there due to his hearing problems.  The only two things that Dad does is read the newspaper everyday from cover to cover and watch the news and sports on TV.  At home he used to go out and visit his friends at all the stores he shopped at.  So now suddenly he was down to just reading the paper, how sad for someone who has mere months to live.

Dad's small space in the 4 person room. His walker in behind his chair wedged in the corner!!

A brief word about his 3 roommates, one had dementia and another just sat, starred and threw things and the third person frightened even myself and was constantly in Dad’s face ( mine also while I was there ) as was the fellow with dementia.  Don’t get me wrong, I have worked with people like this while I was nursing and have compassion for them but not right then while my father was there.  Dad was a prisoner in his bed in a very strange environment.  I had been at the hospital for over 8 hours and had an appointment ( doing something for Dad ) and just had to leave.  A few hours earlier I had asked my sister to call my brother to please come earlier ( it was his night to visit ) as Dad was stressed.  Andre replied, ‘sorry but I am going home to do laundry, make dinner and then I will come to the hospital’.  Later we texted him to ask how was Dad managing ‘ok’ was the reply.  So un helpful.

When I left Dad that afternoon he muttered to me that he was never going to get out of bed again nor eat again.  That hit me hard, I think it was easier telling him he was dying several weeks ago than to leave him in that room.  What to do?  I did my task with my sister as per Dad’s request and then back to Dad’s condo where I paced, cried on the phone to Colin and just did not know what to do.  I did not sleep that night.  At 5AM I left a very strong message with the Transition Coordinator and on reaching the hospital at 7AM I noted that the Unit Coordinator ( the manager of the entire floor, I think 4 units ) was sitting at the desk.  I asked to meet with her ASAP.  Meanwhile I was yelled at by a staff member to not go into Dad’s room as he was being given a bed bath.  As I waited in the hall I noticed another visitor and then overheard her say “Gramma I am here to help you move to the nursing home”.  The room that she was in looked to be a semi private room and there was a TV on the wall.

So I met with the Unit Coordinator/Manager and explained that my father had mere months to live and that he just would not survive in the room that he was in and that I would like for him to be placed in either a private or semi private room.  I explained that he needed his last few months to be peaceful so he could have private time with his family and also for he and I to do the necessary financial business that needed doing at this time of his life.  I mentioned that if he was likely to die in hospital because of the wait that we would prefer it to be in a dignified manner and not in that particular 4 bed room.  She said she understood and hoped then when she was at this stage of her life that there would be the option of private long term facilities.  We do have good health care system here in Canada and then each province has it way of doing things.  In Alberta, where Dad is, long term care is fully covered by the government other than a $58.00 per day charge.  However you don’t get a choice of where you will be transferred to.  You are asked to choose your top three nursing homes but that does not mean you will get into one of them.  I visited several and only one is what I would choose but there are 40 people on the waitlist.  The others are varying degrees of bad to worse and the bottom line is that the system can send Dad anywhere they want and override my three choices.  Assisted living facilities are plentiful with many choices and of course the more you spend monthly ( $4000.00 ) the nicer they are but sadly Dad requires long term care.

So the Unit Manager seemed sympathetic to my case and then I casually mentioned that I was aware that a  semi private room was coming available.  She was aware and  said that it was already being filled by someone else.  I suggested that the someone else take Dad’s bed in the 4 bed room.  I didn’t let up and finally she said she would see what she could do.  I honestly believe that being an RN has helped me get Dad better care both in this instance and on a one to one with the staff.  At this time I went back to see Dad who was now sitting in a chair with his table in front of him.  Only problem was that his walker was way back in the corner behind all of this set up and no way could it be reached if he needed to get up and move or go back to bed.  I sat on the bed as there was no place else for me and asked how he was.  He had had a terrible night and his story was full of hallucinations and accusations of what the other roommates had done to him all night.  My heart was breaking.  He kept putting his finger to his mouth and telling me to not talk, he was paranoid.  This was not going to work but I said nothing about a possible room change just in case it never happened.

He was transferred to that room within a few hours.  It was a semi private but the 2nd bed was pushed to the wall making it into a private and it had a TV ( only 3 rooms on the entire unit have TV’s ) and it is brighter although no view, just another hospital wall, but lots of space.  The staff were fabulous in helping with the transfer, even the charge nurse worked at it.  Dad was so relieved and happy.  Latter I was told that he had the room for as long as he was there, unless a specific isolation case came in, it was a possibility but unlikely.  So by noon Wednesday he was in his own room with his own TV.  Yeah me!  Friday I brought in cupcakes and thank you cards for each of the coordinators and for the staff of the unit.  During the day Wednesday, Thursday and Friday I observed a bond forming between Dad and the staff.  They with my help were learning his routines and he was learning about them.  I knew that I could leave Friday afternoon to come home to my family with a lighter heart.

Already this morning I have been on the phone to the hospital 4 times, I am in the loop as to the many changes he is experiencing.  This new doctor wants to do things his way and has been very accommodating in asking me my opinions.  I don’t agree with some of the things he is trying as in the long run I just want Dad to be comfortable in his remaining time with us.  I would rather he have a permanent tube put into his chest so his lung can be drained every 18 days without causing him pain and taking 4 days to recover, that would be easier on Dad than having his diuretics doubled ( which happened yesterday ) as it is difficult for Dad to use the urinal.  I keep asking myself what is best in terms of comfort for Dad.

Meanwhile the MD has not yet signed the order for Dad to be put on the wait list for long term care.  He wants to get Dad all sorted out before he gives that order.  He has a good reason to wait as once Dad is transferred he will only see an MD every 4 -6 weeks, once again someone assigned by the system. All long term care patients are entitled to see a doctor but certainly not too often and you can imagine the care level.  It will be be up to us as family to monitor Dad’s needs once he is in a nursing home.

Hmmm, guess this wasn’t exactly written ‘ in a nutshell ‘.  Sorry for the ramble but now you know the que pasa.

Dad after the move, he was exhausted. In the other room the person next to the window kept the blind down all the way and his curtain closed around his bed so Dad had nothing to look at. Much better here.

Lots of space in the new room. The bed on the left is pushed to the wall giving more space. I set up this room as it was in cardiac care and now he can get in and out of bed on the same side as he has been for the last 8 weeks which is much easier for him.

He can see the TV from both the chair and the bed and all the photos I taped to the wall.

He also can see who is coming and when. I figured it would not hurt to use the extra board in the room. When I'm there, it is from 7:30AM till 2PM or as long as it takes. One day it was 6:30PM.

The nicest thing is that two of the nurses from cardiac, one the very first day he was in his own room, have come to visit as well as the cleaning lady.  Dad makes friends where ever he goes.  As the palliative care doctor said after spending two hours with him ” he is an extraordinary special person”.