The Last Post

Well...it has been a very longggg, hard winter. Larry passed away-peacefully in his sleep on January 18th.
He had gone to the hospital right before Thanksgiving- we all thought that his PD dialysis was not working because he wasn't pulling off the weight and his blood pressures were dropping way down when I tried to pull any more fluid off.
Then, the 3rd day that he was in, they sent him down to get hemodialysis. When I got to his room at 1:00 pm, he just was coming back, so I ordered him lunch and sat down to visit with him.
HE DID NOT KNOW WHERE HE WAS.......He always knows what is going on-what day, where he is, everyone's name. He had no idea. He thought it was summer and he was at home. I called the nurse and told her to call the Doctor immediately. She tried to argue that it was just pre-dementia! NOOOO! Call the doctor. Dr. Korker walked in and Larry started to talk to him about how nice it was that he was visiting us at home. Now, Dr. Korker is definitely worried too- this is not Larry's M.O. They pulled all sorts of blood and figured out that he had a really bad sepsis-infection in his perma-cath. They treated it over the weekend and when Korker came in on Monday-Larry was so weak, that he couldn't even roll himself up on his side. Korker examaned Lar and pulled me out to the hall- "I think that you should consider taking him home and hospicing him- he is never going to have a quality of life like he wants. This infection really took it all out of him. Or you can take him home on paliative care and he could live 5 or 6 months, if that is what he wants.
I went back in and talked to Larry- he said "SEE- I told you I was sick.
He said that he would like to be able to make it through Christmas. Ok.
I call everyone and tell them and then I have to contact the Social worker because Larry will have to go to rehab for at least a week- he can not move at all. He can't sit up- he can't stand. He is just miserable.
We also had to have new anti-axiety meds prescribed because he was so panicked that he couldn't breathe (Another reason for the panic is they gave him Ambien to sleep for 2 nights and he kept trying to climb out of bed and buzzing the nurse-totally unlike him)
So I have him transported down to Linden Grove- which is right next to the hospital and they supposedly do PD dialysis. This place was AWFUL! I felt so bad for him. It was like a torture chamber-with no cable TV. He improved enough in the 2 weeks that he was there that I could bring him home and he could slide board transfer to get out of bed for a couple hours a day.
We had home health care come in- a nurse and PT and OT therapies. He was making progress- grudgingly.
We had Christmas- he was in bed, but he made it. And the weekend after, our good friends the Wilsons, drove down from Minneapolis and had a really nice visit.
After that, he just slowly got a little weaker, couldn't eat, was either constipated or going like a goose, was hardly drinking anything unless he was prompted.
Biz flew in on Jan.10 to help me because I was starting to wear down. He was constantly buzzing for me- panicking that he couldn't breathe, thinking he had to go on the bedpan, uncomfortable, on and on...and I was only getting about 3 hours of sleep every night.
So, Biz came and we took turns getting up at night. I kept asking him "Do you want to pull the plug and change over to Hospice?" and he would look at me, but shake his head no, but, he was telling Biz that he just wanted to die.
WE moved the good TV and Dvr into his bedroom and the recliner so that we could sit with him. And the last few nights before he died, Biz and I took turns sleeping in with him on the chair. Not necessarily because we thought that he was close to death, but because he was uncomfortable and would get disoriented. We were working with the doctor to change his meds to get more of the anxiety under control and the discomfort with breathing under control.
And Saturday night, I gave him his pills and he had a terrible time swallowing them. SO I got pudding and finally after scaping them off his tongue seceral times, he got them down. But, he was breathing like he had a chest cold- heavy congestion-not wheezing, but you could hear him breathing. In the past- after he settles down at night and the pills kick in, his breathing relaxes and he doesn't have the real congested sound. So, I stretched out on the chair and got up to check on him several times. He seemed to be pretty out, which was good, at least he was getting some sleep. I heard his breathing starting to settle down at about 4 am. I did not get up because I did not want to wake him up since he was finally settling down. At 6:30 I got up and went over to check on him and did our normal wake-up. Ran my hand over his head and just was talking about the day. But, he was cold. It was hard to tell that he was not breathing because the machines were both running and you just don't hear subtle things over the noise. So I shut everything down. And....I was totally shocked, but he had passed early that morning. How can that happen with a defibulator??? Well, apparently (according to the M.E.) when the heart gradually slows down, like his must have, there is an override that lets you die.
I really am so happy for Larry, that he is finally done with all of this struggle and the body wearing out. I really, really miss him. And even though, his health declined so much the past year and he was so miserable most of the time, I still- miss him. His humor. His curiosity. I miss trying to find things that he will enjoy doing. We really were a team for a long time and it is hard to just stop.
So, I am being gentle with myself. I am crying alot- but, I think that I am not only grieving for Larry, but for Mom. I didn't grieve for Mom a whole lot because I had to keep Larry going and if I grieved, he really went into a funk. So, I am letting myself grieve this time.
And then I have to figure out where the heck I am headed. What do I want to do now? I don't have a clue. I have not had a life of my own in 7 years. Many people, thinking they are being caring, have been pressing me-What are you going to do? Are you staying at the house? Are you getting a job???? Don't know, don't know, don't know.
I don't know aht I want to do. I was very good at caring for Larry. Do I want to do that for someone else? Get a job in the nursing home arena?
I don't know yet, but I do know that I am so grateful to have had the opportunity to care for Larry. It was an incredible experience and I would not trade a minute. I was so lucky to be able to do this- for him and most importantly for me. I learned so much about what I can and can't do.It helped me grow in ways that I never expected.
Thank you Larry. I will miss you. I love you.