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.

Cement Patching 101

You would think that perhaps we would have patched the cement on the porch when it was nicer out. A little warmer. Some sunshine. That sort of thing. But, no. Apparently we are a bunch of cement ding dongs and we thought waiting until it is just above freezing, with glacial winds whipping around us would make the project easier. DUH!
In my defense, I kept trying to get the guys to patch the porch all summer. The edges where the wheel chair always runs over had big holes and were getting bigger. I figured that one more winter of that and the whole porch would drop off and then how the heck would we get Larry in or out?
I had been covering the major craters with outside rubber backed carpets, so, it kept major ice from forming in the holes, but still...Porch, dropping off the house...not a good idea.
So, there were Phrog and I, 3 times in the last week, filling in holes and cracks. Hopefully it will all cure and last through the winter.
I have to tell you, Larry and I are both not missing getting up at 5:30 and out the door by 6:15 am to get to dialysis 3 days a week, and now that it is starting to get cold, we are even happier.
And gas is $1.92 a gallon today!

A Long Road to Tipperary

We have been doing the PD dialysis for a little over a month now. It is a lot easier than I thought that it would be for me. It is all about establishing a routine and that makes it easier to get into a rhythm and do it every day.
I have only contaminated the end of his exchange set once and I am not sure if I really did contaminate it- I just assumed that I did and drove Larry down to Delafield to get the exchange set changed out.
We do have some issues yet. The first and main issue is...we are supposed to weigh Larry every day when he gets up to see how we are doing at managing his fluid levels. They gave us this really nice digital scale. Unfortunately, the digital scale does not stay on long enough to get a weight. By the time Larry steps on the scale and gets himself balanced enough to let go, it shuts off. We tried everything. Biz and I finally(with Phrog's assistance and sawing skill) built a wooden frame to put around the scale so Larry could walk a step or two before stepping onto the scale (not UP onto the scale). Still could not balance enough to get a weight.
I do have a regular scale- with a dial, but, again, the balance thing is an issue and he can only let go of his walker for about 1/2 second, so if I am not looking at the right place in the fraction of an instant- too bad, so sad, no weight today. I do try to have him do it again and sometimes it works, but some days, he won't even try to get on the scale at all because he is too wobbly.
The second issue is trying to adjust taking fluid off without dehydrating him. He gets dehydrated so easily and I have been tweeking the combination of solutions to try to take off some fluid and keep his weight down. To make it more difficult 1.5 % solution doesn't even do anything, so I have to use a combo of 2.5% and 4.25%-the stronger I use the more fluid comes off. BUT.... also the more deydrated he gets because it is pulling fluid from places that don't need fluid pulled instead of places that it needs to come off of.
The result is, he has been very wobbly after his afternoon exchanges since Friday. So,5 days of afternoon and into evening wobbly. How fun is that?
I think that eventually, his body will get used to the fluid coming off this way and even out, but, it is mentally wearing to have the same discussions with Larry every day.
"Yes Larry, you are a little weak and wobbly."
"No Larry, you are not worse than you have ever been."
"Yes Larry, you can stand up, we just have to keep trying."
"Calm down.....Breath through your nose Larry."
"I think that you are dehydrated Larry. So have some sips of water while you are watching tv."
And on and on, reassuring him and trying to keep him focused because he has a tendancy to sink into poor me, poor poor pitiful me. Which really does not do him one bit of good, but he does enjoy a good pity party-as do we all.
So, overall- this PD dialysis right now is a mixed bag of nuts- mostly good and hopefully, all will be well as we progress.

Finally out! YAY!

Well, it was a long road for Larry, but he got out of rehab Finally on Wednesday last week.
They would not let him out on the Friday before, because they had gotten his INR-(How thin his blood is with coumiden) up to 10!!! Therapudic is 2-3. 10 is extremely dangerous because you could bleed out from anything! I bumped his leg and he got a huge bruise. They took his blood pressure and his whole arm turned black and blue. He got hematomas all over his butt from the pressure of sitting. It was not good! And then, the doctor would not listen to me about the fact that you can not try to rush Larry's INR up to therapudic. You have to go slowly and it takes time. But, NO! She is the doctor and she knows best...and guess what? His blood started to get real thin real quick again over the weekend because she insisted on "Bolusing 5 mg into him for 2 days" Yeah right. I just can never understand why they don't listen to me. I really do know what I am talking about. I know what he takes and why he takes it. I know what happens to him when he has reactions to some stuff. I tell all the docs and nurses, yet SOME of them, just don't think that they have to listen because they have the degree and I don't.
Well, the upshot is, he got out on Wednesday and we have been driving down to Delafield several times a week to get out training for PD and we start on Thursday. I am a little nervous.
Biz is here, so at least I won't have to do it all by myself. She will be here for moral support. Wish us luck!

Getting out of Rehab on Friday

Well, it has been a long road for Larry, but, he gets released from Virgina Highlands on Friday morning. Susan and Rose have been working him pretty hard and I think that he is a lot stronger now than he was before all this started, so that is a good thing. I do hope that his appetite improves once he gets home, because he has not been eating real well for the last couple of weeks. I don't know if it is because the food is not real good there or if he is getting nauseous for other reasons. I know that he is not pregnant, so that is not the cause for his nausea. All we can do is wait and see what happens over the next few weeks.
We have been driving down to Delafield to get his catheter flushed for the pd-dialysis and it has been flushing great. John says that we can probably start dialysis at home in the next couple of weeks. Biz is coming into town on Tuesday next week, so at least she will be here to give me moral support for the first week or so that Larry is starting. It is always a help to have someone else to say-"Hmmm, what do you think?' to.

Larry got a day at home

It was such a nice day yesterday, that Biz and I brought Larry home all day and let him sit on the porch in the sun, then he came in and watched college football and then took his nap in his own bed. I think that he was a little nervous about walking around the house because the last time he was home, he fell down and got hauled away in an ambulance.
When we took him back to V.H., I think that he was a little pooped out from being out and about.
Biz and I went out to Katie's for a bonfire after dinner. It was a beautiful autumnal evening and we had a nice time. Biz had a little wine and plopped off of the stoop and twisted her ankle a little, so after a little ice on the ankle, I loaded her up and we went home.

Getting stronger every day

Well, it has been a winding road for Larry, being in the hospital, then at Virginia Highlands, back in the hospital and back to VH, but, he is WAYYYYY stronger now than he was before this whole thing started. I am so glad that he is building up some stamina and reserve strength. When he had the procedure last week Thursday, they kept him over night because they had to take out the entire catheter and replace it, so he was laying on his back for 26 hours. He was a little shakey, but could stand and by Sunday could walk to the bathroom without a wobble. THAT! is amazing!
The poor guy was all bound up again after the procedure and on Saturday, they gave him a dose of Milk of Magnesia. That got things moving again.....alot. Poor Lar. At least his bathroom breaks are back to normal.
So, they think that he can get out later next week. I will let you know.