Good Days Ahead

This has been a productive week.  We managed to combine our annual medical staff dinner meeting and monthly board meeting into one night.  I told Ron I only have two more of those meetings left to attend since I will be retiring in two years.  Our quarterly award ceremony was yesterday and I am caught up at work right now which only happens about two times a year.  That puts me in a great place before I'm off on vacation.  I hate to take off only to be greeted by a pile of work when I come back.

I realized last night that 24 months isn't very long when you measure it in meetings.  I have 24 more Board meetings....8 quarterly meetings.... etc.  I can do this standing on my head.  The next two years are full of dates to remember....Ron applies for Medicare in Oct..receives it in Feb. 2014...I apply in  March and receive it in July of 2014...May 2015 I notify the state of my retirement date in July and apply for Social Security.  Ahhhhhhh it will be here before I know it.  In the meantime I will enjoy my co-workers and my job while looking forward to the next phase of my life.

Oncology Update

We saw the oncologist today and she was on the same mind set that I've been on.  She told us about the drug treatment options but then said that there is no data that indicates these treatments will prolong life expectancy or that they will prevent the cancer from returning.  The side effects in her opinion do not warrant the benefits of the drugs.  Ron and I totally agreed and the protocol will be no treatment, continue with CT scans every 3 months and if something shows up again take it out if possible.  So that said, we return to life as before.  

I believe we are on the threshold of some major breakthroughs in the treatment of cancer.  One just has to live long enough to see it happen.

We are still considering a trip but if Ron decides to return to work we won't be able to go anywhere until next April.  I'm leaving the decision in his hands. 

vacation time

Well, I have the chance to take vacation time July 30 - August 11 which is enough time for Ron and I to drive to Raleigh, NC to visit Ron's daughter.  The problem is we can't figure out what to do about Mike.  I learned from Ron's surgery that my older brother isn't reliable enough to leave Mike in his charge.  I'm not sure if either of my daughters would feel comfortable enough to take care of him for that long so I'm still trying to think about options.  

Home health agencies are just too expensive.  It was over $2,000 for one week when we used one for my mom 4 years ago.  

One idea we had was that Ron could drive to Raleigh (we have some things to take to his daughter that won't go on a plane) and then I'd fly there to meet him and ride back with him.  That way Ron could spend a week and I'd just be gone 3-4 days.  Mike might be OK for that long.  My only hang up is I need a direct flight and we aren't sure we can get one.  But we'll see.

The thing about care giving is the caregiver never gets a day off.

Nigihtmare on Elm street

Last night I had a terrible dream.  It is the first time I've dreamed about Ron being sick.  In my dream he was hooked up to tubes and he was obviously dying.  I was also taking care of another dying man that I didn't recognize.  As most dreams go it was confusing and didn't make sense but I felt so sad and so stressed in the dream.  I woke up in the middle of the night and had to find Ron's hand.

Ron is on his way to see the surgeon this morning.  I have to work late tonight so he is going over to check on Mike when he's finished with the doctor.   Ron took Mike to the store on Sunday but he's already wanting to go again and basically buy the exact same things again.  He really tests Ron's patience!  We are trying to manage Mike's money but it isn't that easy.............he is so obsessive.  He will have 1/2 a box of something and then buy another box, open it, and let the first box go stale.  It's what he does with everything.  I haven't figured out how to control this behavior and I hate being the bad guy that tells him no all the time. What on earth am I going to do if Ron's condition worsens?  It really does scare me.

Just talked to Ron and the surgeon has released him.  Dr. T. told Ron that he (Ron) was rather stoic through this whole ordeal.  Stoic (One who is seemingly indifferent to or unaffected by joy, grief, pleasure, or pain) Yes, that sounds about right.  So, on to the next step.

Re-charging my batteries

I enjoyed a day all to myself yesterday.  Ron was with Mike all day and I went 8 hours without a phone call or anything.  I was able to finish all the projects I started on Saturday, take a long hot bath and just relax.  IT WAS WONDERFUL!  Then Ron and I went to dinner with one of my daughters and we had a good time. Ron and Mike watched baseball games and napped!  It was a win/win for everyone.

Sometimes we don't recognize our need to recharge our batteries until we are crying, blithering idiots and our loved ones look at us like we just grew two heads.  That's what happened to me Saturday.  I dissolved into tears and couldn't speak coherently.  Ron then took it upon himself to declare Sunday a peace & quiet day just for me.  I protested at first because I immediately felt guilty but then I agreed.  Mike and Ron went to church without me and I just slept in and had a peaceful slow day.  By 6 pm I felt like a new person!

This week is going to be a busy week at work.  Tomorrow night I have a dinner meeting followed by a board meeting.  I'll get home about 10:00 if all goes well.  So tonight I'm going to bed early.  

Ron sees the surgeon tomorrow and then he has an appointment with the oncologist on Thursday.  That's the appointment we dread the most.  She's going to talk about treatment options, schedule another CAT scan and then I know the waiting for results will just about put us away.  If anything were to show up I think it would do Ron in.   

Overall he is recovering from surgery very well but he easily fatigues.  This frustrates him.  He is still quite sore but moving around fairly easily.

Yesterday as I drove us to dinner I looked over at him and couldn't imagine not seeing him there.  It's a thought I can't let myself think about too often.

Not as expected

Well, after touring the senior apartments (it was not an assisted living center as described).  Ron and I are not sure it will work for Mike.  He would basically be on his own but in a smaller space.  We met many residents there and all of them were much more cognitive and alert than Mike.  The 94 year old domino player was definitely more with it than Mike.  We were told that if residents start wandering or getting lost they are not allowed to continue living there.  One woman was allowed to stay because someone moved in with her to take care of her.  We are afraid that it would just be a pit stop on the way to the nursing home.  But we haven't ruled it out.  The plus side was it is easier to get to from our home.  We are going to wait to see what Mike's doctor has to say and if he doesn't recommend a nursing home at this time we may reconsider the apartment.

This morning I was rushing around to get something in the crock pot and get to work when the doorbell rang.  There on my porch looking very proud of himself was Mike at 6:45 am.  I thought we had all the keys to his car but obviously we didn't.  I just had to hold my breath and let Ron deal with him.   

I talked to Becky, the nurse who does Mike's meds this morning and she believes Mike would do better in a nursing home.  I am struggling because it is so hard to admit I can't provide what he needs.  But I know that if Ron's condition declines there is NO WAY I can care for both of them.  It is just so hard to admit it. 

Candid Camera

Cheesing It Up

 

I'm what you call camera shy!  I HATE, HATE, HATE to have my picture taken.  I always make sure I'm the one BEHIND the camera not in front of it.  I have cleverly avoided family snapshots for years and my family has tried and tried to catch me to no avail.

But, I was outwitted yesterday by my husband.  I forget that phones have cameras in them so I was not at all suspicious when my husband pointed his phone at me.  I'm not growling as it appears in the photo I was actually giving him a big cheesy smile.......... not thinking it would be caught on film. 

So my streak  is over.....I have been caught.   Way to go Ron!

Gus the lawn boy

A nice place to watch the world go by!

This is the handiwork of our 11 yr old lawn boy!

One day while Ron was in the hospital a cute young boy came by with a flier looking for lawns to mow.  He is about 5 feet tall and skinny as a rail.  He wears huge horn rimmed glasses and a safari hat.  I doubt he weighs 80 lbs weight.  I wasn't sure if he was even big enough to push a mower.  But his funny personality and the name of his business made it a no brainer......I had to hire him.   His business slogan was "My name's not Juan but I'll mow your lawn".

Gus (Juan) not only mows the yard but he cleaned out my flower bed and put in new stone pavers and mulch.  (His dad gave him a hand) but it looks great and I'm so impressed how hard this boy works.

God is listening.........................

You know sometimes God hears us and you know that He is totally in charge and leading us.  I randomly looked online today for some kind of adult apartment complex and the first thing that popped up was an adult assisted living facility which are usually way more expensive than we can afford.  But this one is income based......The resident only pays rent + electric (which they said averages $35.00 - 50.00 per month).  There are activities, movies, etc. available for residents.  It has over 850 sq. feet. Living room, dining, kitchen, bedroom, laundry and accessible bathroom.  It's on the 3rd floor (they have elevators) and it overlooks the Owen Stadium......Oklahoma Sooner Football.....that's a big deal for Mike.  He can watch his big screen tv and hear and see the roar of the crowd!!!!!!!!

Normally there is a waiting list but they have an apartment available on November 1st.  We are going tomorrow to see it and possibly put a deposit down.   I think God has answered my prayer!

Father's Day Weekend

What a whirlwind of a weekend.  I got to spend some time working in the yard on Saturday and it was enjoyable.  I haven't been able to do much outside in awhile so I really enjoyed getting in the dirt.  We had our front flower bed weeded and new mulch and paver border put in and it really looks nice.  I really like the way it turned out.  I purchased some flower and filled the window boxes and they look really good.

Sunday, my daughter, her husband and my great niece Sophie came to Mike's and we tackled the yard and the inside of the house.  Sophie was a great worker and she and I cleaned inside and talked, talked, talked while Julie and Larry tackle the underbrush in the front yard.  Ron kept Mike company inside.

I hired Sophie to spend one day a week with Mike this summer.  She's going to do some light house keeping, help him with lunch, and just keep him company from 10am - 4pm one day a week.  She's planning on getting a checkerboard and getting him to play some games.  I really hope it works out.  It will give her some money for school and it will really help me out this summer.   

We are checking on a new independent living apartment here in town for 62 and over that is income based.  I think it would be a perfect transition if we are unable to get Mike in a nursing home at this time.   Ron is calling about it this morning to see if there is a waiting list and get information on the requirements etc.

Now I'm back to work so I can sit down for awhile..........

It's A Grand Old Flag...................

I have to say that venting yesterday really helped but also hearing another perspective was what sealed the deal.  I thank each and every person who took the time to comment.  Sometimes it is just helpful to listen to someone with a completely unbiased point of view.  I can't tell you how much that helped me.  I think I knew it all along but I was just reacting emotionally.  I absolutely do not have the right to tell my brother what to do with a gift from our parents.  

In spite of my new found awareness I was unable to sleep last night.  I wasn't thinking about Mike, Butch or even Ron's cancer.  I just couldn't turn my brain off.  It was going from this to that but to nothing in particular.  My body said sleeeeeep but my brain said no way!  I think I finally fell asleep around 4am and then the alarm rang at 6:00.  It's gonna be a long day!

Today is Flag Day - Olga's birthday!  Happy Birthday Olga and my sweet brother Mike's birthday!  My daughters are taking him out for a birthday lunch!   Happy Birthday all you Flag Day babies...............

Airing the dirty laundry

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.

How Many Balls Can I Juggle?

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!

A new day is dawning

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.

 

Me Myself and I

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.

Tuesday update

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!

Surgery Update

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!~