Yesterday I finally stopped by the bank to get my dad his money. I pay all his bills and manage his money so I often have to go to the bank and pull cash out of him. It is something that takes so little effort but yet it always hangs over my head and I don't particularly like this role in my life. So I ran by his house literally just to drop off the money and to run because we were on our way to Garrett's first occupational therapy appointment. My dad had been sick with the same type of illness we all seemed to have the other week but because of his health it hit him harder. When I stopped by he wasn't doing well and he told me his doctor diagnosed him with pneumonia and wanted him to go to the hospital. But he refused. He insisted he would not go to our local hospital and the same with the VA hospital. He decided that he would wait until Wednesday and if he was not better by then, then he would go to the hospital. Whey Wednesday? Its just a date he picked, that in his mind makes sense, because his doctor keeps giving him shots of medication and gave him several prescriptions, so he feels he needs to give those medications a chance to work. It was obvious that he needed some food in the house as well and I should have gone shopping for him but I was on our way to the appointment. So he said he would try to get his friend to go and if she wouldn't he would let me know. (And that friend better do it, in my mind, because she is always taking, taking and hardly ever giving!)
Then he gave me a copy of some blood work to take a look at. He told me his doctor says his kidneys are failing and his liver is in bad shape again, and that he should get on the transplant lists for both organs. None of this stuff is very new. Its all stuff that we know is out there. Its simple that we don't know when all this stuff will come true. We know, all too well, the path his health will eventually take, but we don't know when or at what rate. And I also don't know how much to believe my dad. Not that he would out and out lie about his health- its more of an anxiety thing. He gets anxious about it and sometimes blows things out of proportion or reads things in between the lines that aren't actually there. When he gets like this I often feel like I need to go to the doctor with him so I can hear it all for myself straight from the doctor's mouth.
The reality is his health will eventually slowly decline. I just don't know when. I try not to think about it or to have anxiety over it. But I don't always know if that is the best thing for me to do. How do you prepare for something that you know will happen but you don't know when? How do I prepare for something when his resources (like money) is so tight? How do I find a balance between helping him, spending time with him, all the while having such a young, busy family?
Seven years ago, the day Sierra was stillborn, he had a surgery that gave him some bad news. He was in Delaware at the time and was not able to be there for me when I had Sierra. A few months later, on what should have been the week of Sierra's birth, I got a phone call from Hospice that I needed to move in with him (in Del, we were in MD) so that I could help take care of him. At that time he was not willing to get a transplant for his liver and thought "just let me die in peace." So for 5 weeks I lived with him in his little apartment in Del. I remember I watched a lot of TV and scrapbooked a lot. Brian would take the long trip over to visit on the weekends when he could. It came to the point where we needed a long (short) term solution and the summer was coming which meant I had my nanny job to do (I used to nanny for twins with disabilities every summer.) So he moved into a nursing home. That was hard for everyone but especially for him. He had to say goodbye to his cat and most of his stuff. He was going in there knowing he would die there. We had to clear out his little apartment and try sell a boat (that was in the water and had no trailer! good grief.) We made so many long trips from MD to DE. He got a lot worse. The thing about having a liver problem is that it is not a smooth and easy death. When the liver stops cleaning the blood certain chemicals accumulate in the system. It caused hallucinations and an altered state of mind. My dad even became violent (not like him) and the nursing home sent him to the ER and would not take him back. So the social workers had their hands full trying to find a new nursing home to take him. This all was not pretty and not easy. I remember literally talking with Brian in the car and saying something like "at this rate he is going to die pretty soon." But somehow he didn't. He got a bit better and he begged to go out of the nursing home. He hated it and still has nightmares about it. Somehow we had him move in with us and had hospice to help us (at this time we had just moved to Bel Air.) While I was taking care of him I couldn't work (its a hospice rule that there is a full time caregiver.) At this point my dad finally starting thinking "maybe a liver transplant wouldn't be so bad after all." So we started seeking help in that direction. Hospice dropped us because once you aren't considered dying in the short term or you are seeking life sustaining help- you don't qualify for their services. That was a bit hard. Johns Hopkins wasn't much help. If we stuck with them I'm pretty sure he would have died a long time ago. Somehow we found Georgetown University's transplant team, near D.C. They were great. He got on the list ASAP and one day we got the call that there was a liver for him (it helped him that he has one of the rare type of blood- the line is not as long, plus his scores were that bad he was bumped way to the top of the list.) At this point my mom moved to Maryland from Nebraska. She had been wanting to come back east to be close to use kids but didn't have a lot of money and I needed help. My dad couldn't really live with us much longer because by this time I was pregnant with Garrett. So the plan was they would share an apartment for a while. So Dad got his transplant and it was a long, long, long ordeal. The transplant itself went OK but beyond that it didn't go all too well. He spent a lot of time with the tube down his throat, he got an infection, etc. He was in the hospital for about 3 months. It was terrible. And more long, long drives all the way to D.C. this time. But he eventually made it out of the hospital. Him and my mom (who have been divorced since I was like 5 but have always been on pretty good terms) shared a rental town home for a while so she could help take care of him until he was up to par. He was able to make it to Garrett's birth. And I remember he didn't see our first house for a long time after we bought it.
(picture: my dad in the back, this was when garrett was born. He was so skinny! My father-in-law, David, is also in this picture.)
So that is that story in a nutshell. There have been many ups and downs. Things I can't take the time to write right now and perhaps don't care to write about. It was a trying time back then. This all happened after I lost my first baby. I was about 22 yrs old. Sierra was suppose to be a newborn when my dad got sick. Sometimes I wonder, what would I have done if she had not died? I have no idea. Those are things I probably should not think about.
(And I realize that I neglected to write why my dad was so sick. He has Hepatitis C which is not curable once it become chronic. Hep C affects the liver and makes it fail eventually. So his "new" liver is being destroyed by the Hep C and his kidneys have been damaged from the transplant\anti-rejection medications.)
So back to the present: I called today and he is feeling better and feels like he is over the hump of pneumonia. His new medication seems to be helping. So that is good. I am hoping he will be a lot better by the end of this week so he doesn't end up in the hospital and so I won't have to worry about him while I'm at camp. Also, the week after camp he is moving. We were told he could get his keys on that Monday. He needs to be completely out of his old apartment by that Wednesday. He found out today he might not get his keys until Wednesday or Thursday now. There is a good chance we will be under pressure to get him moved out on time and to make matters worse- we have to hire some strong able men to help move all the big stuff, and we can only move him into the new apartment during weekday business hours. Brian is taking off from work to help.
So, all this is why I couldn't sleep very well last night. I'm feeling better about it all today. Its life. What ever happens, when ever it happens, we will survive. There is not much choice.
