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I know it is inappropriate to vent every emotion one has on the internet. My brain knows it but sometimes I think I'm going to explode if I don't get it out of my head.
I've been trying my best to figure out how I'm going to financially take care of Mike. He is on disability (approximately $800/month). That is not enough to maintain the 2,000 square foot home left to my two brothers and myself in which Mike currently lives alone. The taxes, insurance and upkeep are just too much. So, my plan B, if a nursing home will not take Mike...was to find a small apartment where I could budget his expenses a little better. I need to use the money from selling the house to do that but I need my older brother to kick in his share of the house the same as I'm willing to do. Unfortunately he has informed me that "he needs HIS money". I can use my part and Mike's to take care of Mike.
I just felt so hurt....it's OK for me to have all the responsibility of our brother but without the financial means to do it. I wish my mother had not left the house to all three of us but to Mike only. It would have made this so much easier.
I've been trying to tell myself to let it go. I just have to realize that I'm alone in this and that I just have to keep doing what I think is right.
I've never been very coordinated and I certainly am not athletic but I'm developing quite a talent juggling. I juggle care giving for two people while working a full time job. I maintain two homes, my own and my brother's house. I manage the finances for both households. I cook meals for my husband and myself and cook separate meals for my brother who has food allergies that include milk, cheese, tomatoes, grains (except white flour) and MSG to name a few. I keep all the balls in the air at all times because if I look away for a second they will all come crashing to the floor. The only time I take for myself is for prayer because without Him I would simply pull the covers over my head and give up.
My husband and family are constantly telling me that I CAN'T do all that I do and that I'm going to kill myself but they never give me an alternative. I know that my brother needs 24 hour nursing care but no one tells me where I will find it. So far we have been denied by 3 homes because of his psychiatric diagnosis. Yet, they still keep telling me I can't take care of him. What do they expect me to do, walk away?
The only argument that Ron and I have ever had is over Mike. I realize that Mike is not Ron's brother. I also know that Mike is the reason Ron never wanted to get married during the ten years we dated. He knew that some day I would be responsible for my brother. He says that he accepted that a long time ago but he struggles with it and I can understand why.
I held my mother in my arms as she took her last breath. The last thing I said to her was, "Don't worry about Mike, I will always take care of him, it is ok to go." No one else was in that room and no one else made that promise....it was me. I will die trying to keep it!
I went to bed last night at 8:00 and I think I'll do the same tonight. I just can't seem to get caught up on sleep.
I had 5 voice messages on my phone when I got to work this morning all from Mike. He started calling about 5am and called every 1 to 3 minutes on the first 4 calls and then at 8:03 on the last call. Honestly if I strung them altogether I still couldn't make heads or tails out of what he was trying to say. I called him but still didn't know for sure why he had called. I never heard from him again while at work.
I think I have a plan for what comes next. We have a psychiatric appointment set up for July and a primary care physician visit. They may order the neurological work-up and I'll just give the doctors my notes for the past 3 months. I keep daily notes to help explain the changes we are seeing. Then hopefully they will recommend long-term care.
The next step I suppose is getting him qualified for Medicaid long-term care. I don't know what that process involves but hopefully since he is already receiving Soonercare (which is Medicaid for health care) it won't take much more to get the other approved. But who knows.
Then we will have to find a nursing home willing to admit him and that takes Medicaid. Not as easy as it sounds. We were never able to find one that would take care of my mother and she didn't have any neurological dysfunction. She was just end stage of life and bed fast. So the process is only in the early stages with a long way to go.
I haven't even thought about Plan B if the first plan doesn't work. I'm just too tired right now to think much further than the present.
Had to take Ron to urgent care this morning. He woke up with a lot of blood in his urine so I suspected a UTI...was right. Got him started on an antibiotic and then hightailed it to work. I've got to get myself back in a routine.
I picked Mike up yesterday and brought him over to our house. He hadn't been out of his house in 2 weeks and I thought he needed a change of scenery. He ate lunch with us and talked to Ron and was ready to go back home after a couple of hours. He is still agreeable to do whatever the doctor tells him. I sure hope that attitude continues. We bragged on him for being a responsible man.
I made Mike some salmon patties to take home (one of his favorites) and fixed him a spice cake which he also loves. I'd do anything in this world for my brother and I just want him to feel loved and safe. I'm doing the best I can.
Butch is supposed to be stepping up to help him but he is inconsistent. Mike has been waiting all day for him to come and go to the store for him. Mike just called and asked if he should drive himself to the store. I said no that I'll come take care of it when I get off work. Butch doesn't understand how anxious Mike gets and how you have to do what you say you are going to do. He relies on routines and what he can expect next.
I've decided I must get rid of any expectations of have of others. You can't count on other people so you need to just rely on yourself. If I let go of my expectations I won't get angry or disappointed. As long as I know that I'm doing the right thing I'm OK.
Ron came home from the hospital Thursday afternoon and we are getting settled back home. He's still very tired and has no stamina but otherwise doing ok.
Mike is recovering from his fall and my older brother has stepped up to help. He told me last night he wants me to pull back and let him take care of Mike for awhile. He is really trying to help.
Mike has agreed to do whatever the doctor recommends. If the doctor recommends a nursing home he says he will go. Of course I know that could change tomorrow but for now I think he recognizes his needs have increased and I'm not able to meet them.
I'm mentally and physically exhausted and I feel as if I could sleep for a month.
Ron has a hollow sound to his voice. I guess it is from the reduced lung capacity. He looks like someone with cancer. His appetite is gone and he just wants to sleep. His doctor wants him up and walking as much as possible. I haven't been able to get him to walk yet but he says he will try this evening.
We found a father/son team to mow our yard this summer. I came home and found a flyer on the front door and they just live down the block. I didn't want to impose on my son-in-law even though he said he would mow it for us. I felt like he already has enough to do. I was impressed that this dad was trying to teach his son about work ethic. So, it's a win/win for everybody.
I worked yesterday and had a late meeting. I only saw Ron yesterday morning but he said he was doing fine.
I found out last night that Mike got tangled up in his sheets and fell out of bed. He called 911 and when the EMT's and the police came they saw all Mike's bruises from his previous fall and suspected abuse. Fortunately Butch was able to tell them what had happened and that we took Mike to the ER for treatment. We have to fill out a report but the officers said Mike needs to be in a nursing home. I think we are all in agreement about that but Mike is refusing. The one thing I know is that if he is resistent and acts out or becomes physically aggressive they will not keep him. So I'm not sure if that is the right way to go at this time. I'm going to wait to see what the doctor tells us.
Then to top everything off Mike had another bowel accident last night. This time Butch got to deal with it and see first hand what Ron and I have been dealing with.
I'm feeling completely caught in the middle. Ron is worried about me and therefore getting very resentful of Mike. Butch is angry with Mike and I feel torn.... I want what is best for Mike but I don't know how to get it. I was so worried last night I only slept 2 hours. I still have a job to worry about, Ron to worry about and Mike.
The removed Ron's last chest tube today. He may come home tomorrow. I have to get ready both at work and at home.
Wish me luck!
It has been a long four days but Ron is doing great! I can honestly say it was only a little uncomfortable the first day and that ended early evening. He's just done great ever since.
Today they removed one of his chest tubes and his epidural. He was worried that the pain would start once the epidural was gone but so far he just feels a little sore. Tomorrow they will remove the last chest tube and I'm thinking he will come home on Tuesday.....ahead of schedule.
The spot was malignant and it was renal cell carcinoma so we have now confirmed that his original cancer has spread. His surgeon said it was probably always there but this type of cancer does some strange things. As long as the original tumor was growing it put out a hormone that suppressed the other cancer cells. When you remove it then other cells start growing. Now we've removed another cancer and we should expect it to pop up somewhere again. This was hard news but we will just keep fighting it as long as Ron can tolerate surgeries.
The hospital has been great and his care has been excellent. About an hour after he was taken to ICU he had to be evacuated because of tornado threat. Then he was evacuated again the second day because this time we could see the tornado from his window. It came very close to the hospital and our home. Then we were hit with flooding but fortunately we are ok. I don't know how much more this poor state can take and especially Moore, Oklahoma.....
So Ron is one tough cookie....he survived lung surgery and tornadoes.
I am personally exhausted trying to take care of Mike and Ron. I came home and cooked several meals for Mike. He's using a walker and still looks beat up. He refuses to go to a nursing home and I'm just not able to focus on him right now. It's a mess. Maybe when I have time to regroup I will figure something out. I'm just feeling very resentful toward him right now and I know that's not right. He's just sucking the life out of me.. The first night I came home to sleep after being up more that 36 hours straight Mike called me at 1:39 am. It scared me to death because I thought it was the hospital. I was really aggravated and kind of lost my patience with him. He was awake so of course he called me. He lied and said that Butch told him to call me......so he knew better. I know it is his mental illness that makes him so self-centered but it still drives me crazy! I just needed someone to think of me for a change.
Then my niece called and said she was drinking. It wasn't the best time to use me as a confessional....no patience left. I told her she has to make up her mind to either get busy living or get busy dying. The doctor told her if she doesn't stop it will kill her and it won't take long. I said if she chooses to drink then she at least needs to prepare her daughters for living without her. It's her decision. I felt so mean but I'm tired of taking care of everyone else....they have do take care of themselves.
I'm afraid God is going to have to do an intervention on me!~
