So I have started several blogs over the past couple weeks but never get far. There are so many things I want to say and are feeling but there are just no words to describe. The past few weeks have been an emotional roller coaster and I feel like not only will my seat belt not latch but the lap bar is stuck in the upright position while I'm about to go over the tallest drop.
I say the past few weeks, but looking back it's only been 10 days. Ugh. I did not need that realization.
On the 18th Aaron's parents left for their move/roadtrip to New York. It's something we knew was coming and Aaron had talked about alot with his parents (side note: he wanted the knowledge that his parents had a place to go and would be taken care of when he was gone and they wanted the security of a home to come back to rather than trying to start a move when all was said and done) it has been hard without them. Even though we encouraged them to go and get settled, then come back, I did feel a bit abandoned. It's hard to be the soul caregiver 24 hours a day. Let me make it perfectly clear that I love Aaron and do all of this out of love and respect, not obligation, but even then it makes for a long day.
After the pizza fundraiser, on the 16th, Aaron's back started to hurt terribly, along with the already new and bad liver pains. With the help of hospice, multiple phone calls and nurses visits, his pain meds were raised to a level that makes him comfortable which is now three times a day instead of two.
Shortly after that he started having hallucinations. Not of bugs on the wall or scary things around him but of travel. Like sitting in a train and viewing our entertainment center as an antique cabinet while he composed a text message on an old fashion type writer. It may sound funny now but it was quite scary and confusing at the time. It turns out this is related to the fact that his liver is loosing function and starting to create a build up of ammonia in his system. So once that was figured out another medication was added (twice a day) to, in essence, bind the ammonia and flush it out of his system. At some point the ammonia will overpower what the medication is able to do and the cognitive issues will return.
On Tuesday Aaron's lift chair broke. It had been such a blessing that our friend Karen gave to him to use after her husband had used it. It looked to be more than we could or had the patience to fix. Two separate screws were broken off, a screw on the other side was bending and some wood had been splintered. This may not seem like a huge thing to overcome but it was almost my breaking point. It just seemed to be the icing on the cake.
Wednesday morning I found a new lift chair on craigslist for $75. That is almost unheard of being that they cost around $1300. That was truly a miracle. A friends son was able to pick it up and deliver it as well as haul off the old one to St. Vincent DePaul where they can hopefully fix and resell it.
Wednesday afternoon was Aaron's first day out of the house since the fundraiser. We had to go to the doctor to have bloodwork done to get a pre-authorization for his insulin. When we got home Aaron got light headed getting out of the car and fell on the sidewalk in front of our house. We tried for a while to get him up, just the two of us, but there was just no strength in his legs. After a while we decided to call the paramedics. Of course they showed up in all the fire truck and ambulance glory.(at least no sirens). The men were able to help Aaron up and he used his walker to get back into the house. Of course somewhere in the process of getting up he separated a rib on the right side.
So to recap, in the last 10 days, extreme back pain after fundraiser, Aaron's parents moved, hallucinations and realization that liver is failing, chair breaks, fall and separated rib. No wonder the last few days all I've wanted to do is sleep.
After things happen so close together my depression usually gets worse. I go through so many ups and downs and anxiety having to make decisions, solve problems, come to grips with the newest "normal" that I just crash when there's a lull.
The last three days all I've wanted to do is sleep. Aaron's very good at letting me do what I need when I can. Of course I still need to make sure that he gets his meds at the right times, has something to drink, doesn't need any breakthrough pain meds and figure out what's for breakfast, lunch and dinner. With his new med regiment he has to have his first dose at 7am and has to have something to eat before he can take it. Then again at 2:30, dinner time and the last dose at 10pm. This is even harder to do when I'm depressed and don't want to get up. I don't list everything I have to do for Aaron to complain. But people don't know what our life is like on a daily basis.
Today I feel indifferent about everything. I want to sleep, but I don't want to leave Aaron alone. I'm hungry but I have no appetite and nothing sounds good. I'm tired of watching tv, but I have no interest in doing anything else. I feel restless and agitated. I also feel like I could cry at any moment. And there's nothing I can do to fix or change any of it. That's the hardest part.
When I was a little kid and didn't want help with something I would say "self do it!" well. Now I'm in a situation where so much is going on and there's nothing I can "self do"! I am completely helpless to be present while Aaron's body slowly fails, then just stops working. Sure I can make sure he has pain meds and is as comfortable as possible but that doesn't actually fix anything.
Our next hurdle is going to be finding a roommate and fast. We have to have someone move into our second room in order to make it financially. On Aaron's disability alone there is no way we can pay all our bills with the $300 that is left after rent. It's hard to find someone that's willing to move into the mess that is our life and be willing to pay to do so.
The only way we could get by with not having a renter is if my disability appeal comes through and I am granted disability for my anxiety and depression. Honestly I think if they lived just a day or two in our house they would practically throw the certificate at me! But instead they go by notes and the amount of money they would have to pay out to me over my lifetime if I never go back to work. It's so easy for someone who's never dealt with this illness to look at you and say " I hope you feel better soon." It's not like a virus that goes away. While some days are better than others, it is something that I'll have to deal with constantly and will probably always be on medication for.
So that's my update. If you have any extra or are willing to help us out there's a donation button at the top right on my blog. Things are going to get ugly real fast for us we don't get something to bring in that extra money we need.
Thank you for following and reading both mine and Aaron's blogs. It is nice to know that people care even when we feel so alone.
