30 April Saturday

Today was First Communion day for Noah, something that has been on the wish list for Krista for two years according to Mike. There was always a possibility that things would not go to plan but every day since I have been here it has been a topic of conversation or something was happening towards today.  It involved the church bit and the lunch bit at Di Napoli Restaurant  for 23 family and friends. It was always going to be either Noni going or me going as someone had to stay with Gramps. The end result was me going just to the luncheon. So we had to agree on a plan with Gramps in the morning to work around me being gone. 

Today was a totally different day from Gramps than yesterday and somehow Gramps seemed down from the start.

He did not want to get up this morning, was cold and wanted to warm up first, but came out for breakfast and by then sun was pouring into the kitchen and it was nice and warm. He stayed up until it was time for me to be picked up but was pretty quiet and then got back in bed, said he thought he overdid it the day before. 

I came home with Tony and Natalie as they wanted to say hi to Gramps. He really does not want company because he is not looking his best but rose to the Occassion. Martinellis and the Gregs arrived after that, gramps stayed in bed. Once everyone was gone Noni and I both had a little snooze but put our heads together to come up with something for gramps to have for dinner, fried potatoes and eggs. He would have happily slept on but Noni told him he had to sit up. He ate the eggs with a root beer  and asked if there was any ice cream, polished off the frozen yogurt Michelle had brought over. 

We sat in there with him and got talking about various things and aside from 2 short coughing bouts he    talked almost normally and we were able to have a bit of D&M for half an hour or so, the longest and the most he has talked since I got here. He talked openly about the situation and said it was clear they could not stay on in the house alone, doing nothing was not an option. He says he thinks although he may get better then he is now, he does not see getting his strength back, so does not like the look of the future for himself and how that will impact on Noni. It was good to be able to discuss things openly. 

He decided to come out and sit in the den where Noni was doing her crochet. gReg arrived to sort out the TV again as the two remotes keep getting used wrongly and then we lose the channels. They need a new Comcast box and cable to match the new TV. Hopefully this will happen tomorrow. I still think he is improving physically and moving around more  easily, but it is slow and I am not sure about his mental health, his spirits, this is where his situation is taking its toll. 

2016Photos1

I have not taken too many photos this time around. Gramps has not been able to shave or do his daily hair routines for over a week now. This, his state of physical and mental health and all the weight he has lost mean that photos of him at the moment are not on. Noni also has not been out at all since the day Gramps came home, Wednesday. She has still got dressed each day ready for whatever comes but that one morning effort is it. So I have only had a few opportunities there too and somehow taking photos has just been harder. But I have  a few photos to share. Linda was going through Moms coats and jackets and she tried on a few for us. Martinellis setting up new TV. Noni making her pasta sauce which she then distributes to the households. The box of 12 Taco Bell tacos which arrived with Mike one day for early lunch. gRamps in den reading newspaper, everyone very excited about that as he had no interest in newspaper or TV before this hospitalisation. Enjoy.

Friday 29 April 2016

It is now Friday afternoon so we have been through nearly 48 hours. At this stage Gramps is significantly better than when he arrived so that is positive but I will go back to the beginning.

First full day, Gramps very late waking up but we decided to just let him sleep although Noni was in there every hour. This meant a very late breakfast but he sat up for that and got thorough all the medication regime with a decent amount of input. he is on less pills than before so that is good. He was definitely happy to be home but weak, not able to converse much and still looking pretty drained. Also if he gets up or does anything at all he then sits for 5 minutes to rest, can be hard to watch. 

The Hospice program provides a team of people who cover different areas, some of whom we will see regularly, others not so often, but all of whom are to be available for you at any time by phone, at least that is on paper. Thursday was first visit from Hospice Case Manager named Jane. This caused great confusion the night before. Linda was told by the agency person on weds night that our case manager Janna would be calling to arrange a time for Thursday morning. Later on weds night Linda received a call from Jane the RN who hoped to come by on Thursday afternoon at 1. At 11 in morning we had not yet heard from Case Manager so initiated a number of calls, but turned out that Janna and Jane were the same person..and she did arrive at 1. She had a confident way about her but spoke softly with a very strong Russian Accent. She spent close to three hours here. The first two were with Linda and I as Gramps was sleeping soundly and Noni did not want to participate. We went right through the Hospice program components and got the paperwork completed. tHe Hospice service is at no cost to G&N, costs are paid to agency be Veterans Affairs and or Medicare. 

We Also spent some time on the other services we thought we needed but it is all new territory so we are not even sure what is available. Jane  wanted to know about Dad, his work career, his social and family life, how long he had been unwell, etc. then she wanted to meet Dad for which we had to wake him up. This was pretty interesting, she really was determined to develop a relationship directly with Dad and even though we were all in the room she spoke mostly to him, checked him over, ran some tests, asked lots of questions, talked about the medications, their purpose and value, took a test to see if he really needed the oxygen, etc. she had him pull himself up on the bed and stand up and take some steps. she offered lots of advice and felt he still had some infection in his lungs that needed treatment, possibly pneumonia but could not be sure without test, but he definitely needed to stay with the oxygen all day.  But at the end said she would be back on Monday and if Dad did the following things he would be much improved by the time she saw him again. We were all a bit shocked as he did not look like he would ever get well. She told him that he had to force himself to do things for himself whenever he could, get up and move around, do things he would normally do, eat well and drink whatever he wanted as long as he was putting in liquids. 

Dad got stuck into the water and juice that Afternoon and decided to surprise Noni by coming into the kitchen to have his dinner. He still looked pretty ragged but forced himself to eat soup and then stayed up for about an hour before heading back to bed for the night. Noni was thrilled.

Today he slept till 9. NOni had sent me on an errand at 8.30  to see if Nick at Sciandris Hardware store had the part we needed for their toilet, more on that later. I suggested it might be better if I waited till after dad had woken and done his brekfast and meds but she wanted me to go then, got a bit thingy about it. So off I went. bY the time I got back Dad was awake and sitting on the side of the bed finished with his  breakfast and ready to do his morning tests, but feeling cold and so stayed in bed to get warm. 

Around 11 he got up and wanted to walk, went through to lounge room, bit cold there so into Den where cozy lounge and blankets were available and decided to stay there for a while. Asked if there could be a snack, maybe some salami? Of course there is always salami. Then Martinellis arrived with a new flat screen TV. (Their TV had conked out the day gramps came home). So Gramps just sat and watched all of that process, emptying and cleaning out the tv space, getting the new one set up, turning it on to the first channel that appeared, the Catholic channel and just enjoying the show. Once they left he had a coffee and donut hole and read right through the newspaper. hE ended up being out there for 3 hours, was exhausted by the time he got back to his bed but happy and went right to sleep.  Krista and Greg and kids arrived in afternoon and he had chats with them and then with Michelle who came after, so lots of engagement. Greg got the rest of the TV set up Done too.

Once everyone was gone Gramps got up for dinner again, ate with a bit more gusto and then said he would watch TV for a short while. Both he and mom were planning on an early night. but Gramps ended up flicking through all the channels and finding a Cowboy movie, so they watched that. So two big periods out of bed today. We will see what tomorrow brings.

April27_2016

It is Wednesday night now and it has been a big day. First day was arrival day, mostly spent at hospital. sEcond day was the day we talked to team and said Dad was going to go for the home hospice option. Plan was that Dad would come home the next morning, weds and a number of things would happen before and after that.  Today was that day and it was a big one. With the bed gone we did a bit more cleaning and reorganising of remaining furniture but as we did not know what bed would look like  thought we would wait for that. Bed and oxygen delivery was done by 9.3o but then it all started to go west. Several other deliveries arrived with either equipment or unmarked bags of supplies but no Dad. tUrns out they could not find Dads shoes (this is because he arrived in sippers approx 7 days before) so he stayed for lunch and did not arrive home till close to 3pm. Big process to get him out of transport and onto the waiting bed, lost of dramas and gramps was very stressed, but said he was happy to be home, the room looked great, he felt very proud to be brought in there and have us all waiting. Then all he wanted to do was sleep which he did till the Greg and Krista boys started arriving around 5.30. One by one the paid a visit and Dad was happy to see them, had little chats, asked them about their stuff, very cute. He sat up for nonis little dinner she had made him and ate almost all of it, did just a few of the men's and now is tucked into bed hoping that he can fall back to sleep.

He is very week but wants to do some things for himself if he can. wHere he cannot Noni is ready to dive in. So although he has only been home for approximately 6 hours it has a positive feel and all of us are happy he is home. But it all depends on weather he regains some of his strength and can get on top of the coughing, that really exhausts him. 

Tomorrow we will see his case manager and the nurse from his team and we will go through a lot of questions we have now that he is home. We also have a number of people we are talking to about a live in person. lInda has already begun that process and Noni now seems to be willing to give that a try, but that is as far as we have got to.  We are hoping that we can get through a full week of the program to see how the week works but there are a lot of ifs, if and how much he improves, how Noni copes with the responsibility and the duties, how able they are to be on their own for any part of the day, etc. it was a pretty hairy start today and that was with Linda and I  on deck. So we just move forward from here. 

April25_2016

Hi all, this is the one I thought I sent on Tuesday night  from Martinellis, obviously did not get published, so that just tracks the first two days. 

It has been full on and this is the first time I have been in a wifi zone, so here goes. I have no time to edit so sending as is.

I arrived in San Francisco right on time at 9.30. NOni and Linda came to pick me up and it was straight up to the hospital where spent the rest of the day till around 4. Krista was there for a while too. 

Across the afternoon we met a range of people across doctors, nurses and Social service people. Everyone is very nice to Gramps and Noni especially Dads young Phillipino Nurse, David, who is just wonderful with Gramps. 

Gramps is pretty down, knows he is not going to ever get back to any decent level of health and just kept saying things like "what is going to happen now, how will it all work?" 

They have definitely decided that he is too unwell to do the assisted living option, I guess because of the extra care he would need it would start to get too expensive and Mom does not need that level of care.  so it is about find a stay-at-home option and the Veterans Hospital has a range of options depending on "what your goal" is. They keep asking Dad what is his goal,  They have asked him this a few times, Gramps has not handled the question too well, so we have had to have lots of follow up conversations once various hospital were gone. 

They asked him in a few different ways does he want to to get better and build up his strength to get back to some level of independence or just to go home and "be as comfortable as they can make him". In real terms this means go home and be comfortable for as many days weeks months as you have left, but no one is saying the word dying. So it is all a bit awkward and a lot of the conversations just kind of skirt around the real question, is this the beginning of the end. 

Noni definitely thinks it is has said a few times " I did not think he would go like this, I thought he would just have a heart attack." Other things she is saying just in passing, it is clear that she thinks he is going but of course who can say if it will be fast or slow. She just hopes he does not stay like this too long, either gets stronger or goes fast.

Yesterday I just kind of listened to everyone and said a few things but just did not want to dive in too soon and say too much and certainly not want to look like I was dropping in and taking over. But by this morning I had had some conversations with Noni and separate conversations with Linda and said up front that I thought that the best thing to do was to try something new. And if the VA was offering a range of services we should go for the most comprehensive thing they had to offer, which is the Hospice Palliative care option. fOr Gramps every time they mentioned Hospice he had pulled because in their experience once someone goes into hospice the next thing was the funeral.  But they talk about it as a stay at home option for someone who is failing, using a non hospital approach, a health professional approach rather than just doctors who are trying to solve a problem, a different approach to medication, different response to crisis situations and a whole stack of education to support self management. So a whole new ball game. in general they are all exhausted from the merry go round of incidents and hospital stays, coming home and then finding themselves back in the same spot a few weeks later.  

we had an apt at 11 in Dads room with all of the doctors and social services people who have been looking after him, about 6 people. It just happened that I found myself in the room with just gramps about 5 minutes before everyone came in. Linda was parking the car, Non took foo to the toilets, so I took the opportunity to talk to Dad and see how what he was thinking. Of course he asked me first what "What is the decision, what is going to happen?" So I dived in and said I thought he should just focus on getting home with as much support as was on offer to make being home possible and get off the hospital merry go round. since the Hospice palliative care offered the most in house support, that was the way to go. It would represent trying something that was totally different and the fact that the services are available AT NO COST for veterans makes it a no brainer. 

sO by the time all of the specialists were in the room and Aunty Lindy and Noni were there and they asked gramps and the rest of us to talk to them about understanding of the options for what to do next, everyone looked at me and just sat there. Dad says, my daughter knows what I want and she will explain it.  So took a deep breath and talked it through and making it clear Dad was happy to go with the Hispice program.  It was clear to all of us that this is the option the doctors would have recommended themselves. Part way through we could all see that Dad was having a little snooze, which continued until everyone had left at which point he opened his eyes and looked at us and said Is it all organised?

Honestly it is like a weight has been lifted because a decision has been made and they're as a set of things to do now. once we have made that choice it is all systems go. Tomorrow morning a hospital bed will be delivered along with a range of other items Mike Linda and I took gramps bed down this afternoon. Once he is home someone from the palliative care people will arrive and walk us through the new world order. Will try to write another post tonight in prep for sending tomorrow.  

Personally I think getting him home will have a positive impact straight away. That's all for now, we are at Martinellis and the Chinese food has just arrived along with Santino and Krista.