What I Wish I Knew, Part 1

I wish I had what I am fixing to write when I was taking care of mom.  This may end up becoming a book.  Seriously.  It is something that has been on my mind for a while now.  It is inspired by a friend of mine.  Actually, she inspired me to start this blog. I learned so much from her and others.  But their experience wasn’t mine.  Mine is different.  I am an only child. And having the duties totally on me was difficult.  Not only that, being a wife and mom on top of it, well, was nothing short of a miracle I made it.  I want this to basically be a draft if you will, of a book I hope to write.

I guess where I want to start is where I began in my caregiver journey.  It wasn’t with mom.  It was with my father in law Richard. He was a man of his own rules.  But, he was also the most amazing man I knew.  I learned a lot from him.  He taught me about carpentry and some metal work. He was a radioman in the Navy, got out right before Vietnam started.  He also worked for IBM and Kodak before he retired.  He was also an avid Nascar and Law and Order fan.  I met him when I was 15, my now husband was 18.  I don’t know what it was about him, but I felt like a part of his family as soon as I met him.  Fast forward to 2003, he felt a spot in his throat and he knew deep down inside it was cancer.  He asked us to move in and help him with stuff and since we were looking for another place to live, it made perfect sense to us.  So, he and my husband got the rooms ready for us to move into and life went on.  Finally, one day, he went to the doctor and got the confirmation that he in fact, did have cancer.  That was the first time I ever had scotch as well. Cheves scotch was his stiff drink of choice.  We all knew what was going to happen from then on,  or so we thought.  His cancer progressed pretty fast.  He ended up having to have his voice box removed and have a tracheotomy because the cancer was wrapping around his trachea and esophagus.  He started having cancer treatments, chemo and radiation.  But, after once chemo treatment, he said no more.  It made him so sick.  He couldn’t eat by mouth because it of his esophagus and it actually sent him to the hospital.  I took him to and from his radiation appointments for 6 weeks, 5 days a week.  It was not only hard on him, but me as well.  I had a 2 year old at the time.  Taking care of a 2 year old alone is exhausting, but taking care of someone who has cancer, that was the death of me.

November 14, 2004 would be a day I would never forget.  That day was my son’s 3rd birthday.  I am glad he wasn’t old enough to remember how hard that day was for me.  Richard had a doctors appointment. Not just any appointment, but it was his 6 week post radiation appointment. I will never forget sitting in that doctor’s office with him and waiting for the doctor to come in.  It felt like eternity. When the doctor came in, that look on his face said it all.  I knew.  When the doctor said that the cancer was back, it felt like slow motion.  The radiation took it all, but, because it was an aggressive type of cancer, it came back and the doctor said there was nothing else they could do.  The doctor said that it looked like the radiation did nothing and it was worse than it was in the very beginning.  I excused myself and told Richard I had to go to the restroom.  He knew what I was doing.  I went and cried my eyes out for a few minutes.  I didn’t want him to see me cry like that.  It all felt like a horrible dream.  I came back after a few minutes and I remember Richard asking me if I was ok.  I said I was, even though I wasn’t.  We came home and cue the second shot of scotch.  That one shot probably was the most needed ever.  Trying to stay strong for not only Richard, but for my son and husband.  Trying to celebrate my son’s 3rd birthday was not easy.  They gave him 6 months.  He passed March 4, 2004.

Those 4 months were the most trying months of my life.  I had support to a point.  I had my husband, both my parents, and some amazing friends.  But, what I didn’t have was all the advise that is online or the different groups that can be found on Facebook or in general.  We had hospice coming in to help bathe, dress, administer meds, etc.  But, I was pretty much doing it alone.  My husband was really being more dad to our son, honestly because me being mom was hard.  I will say I will not talk bad about my husband’s siblings because they lived quite a ways away.   The closest one at the time lived 3 hours away and both her and her husband had their own careers that made it hard.  The other 2 lived in other states.  So, no, no badmouthing them.

My day with Richard consisted of making sure I was awake early enough to make sure my son didn’t find his grandpa dead.  My son was generally good at coming in our room when he got up, but it was always a fear that my 3 year old would find grandpa dead and not understand what was going on.  I would get my son changed, dressed, and get him breakfast. Get me dressed for the day while my son was eating.  Go in and check on Richard and help him to the bathroom if needed.  I would get him his “food” if you wanted to call it that.  He had a nasal feeding tube and had a nutritional drink that he had to have because at the rate the cancer was growing, it was crushing his esophagus and was no longer able to get food down.  If he tried to eat, he would choke.  It always drove him crazy when I cooked because he missed home cooking.  I also had to be careful on what spices I used, especially garlic, it would irritate his tracheotomy.  Generally by the time I got done with morning stuff, the hospice nurse would come in and help him bathe and all her other stuff.  She was great, an angel, and would talk to us to make sure we were doing ok.  She knew we were going through a lot.  She always told me that if there was ever a point where I felt like we couldn’t handle it anymore, to let her know.  She always made me know that they were there for us.  While she was there, I was generally able to clean and do things that needed to be done.  Since Richard couldn’t talk, he had a little bell that he kept by his bed if he needed something.  Generally it was going to the bathroom.  And of course, it was always when I was dead tired and trying to relax.

I remember one day in February of 2004 we had snow.  Richard grew up in Vermont, so snow was home for him.  I went in his room and was going to do something for him, and he said it could wait.  He wanted me to take our son outside to play in the snow.  So we did.  I remember him sitting up in bed watching his 3 year old grandson play in the snow.  When we came in to warm up, the smile on his face was priceless.  I knew he needed to see us enjoy it.  He knew that it was his last time to watch snow fall and I guess watching his only grandchild play in the snow brought back his boyhood memories.

A week before he passed, I could tell had had enough.  He was really fidgety and we had a really hard time keeping him from picking the tape off of his morphine drip.  One night, I will never forget it, I went in to check on him before I went to bed.  I came into his room with him had already pulled out his feeding tube.  At this point, I could tell he was just done.  He wanted to go.  He had lost most of his brain functions because his airway was getting more and more closed up.  I got my husband to stay with his dad while I called the hospice nurse.  They came to check on him that night and had tried to get the tube back down, but because the cancer was crushing his trachea, the tube was the only thing holding it open, it had collapsed completely.  I knew then at that moment, it was beyond me.  I couldn’t take the risk of my son finding his grandpa dead.  The next day when his regular nurse came in, I told her it was time to move him.  I hated that I couldn’t keep taking care of him, but I had a child to think about.  What kind of mother exposes her child to watching someone die like that?  I had a long talk with the nurse about it and she agreed that it was getting beyond us. I knew Richard was done.  He knew subconsciously what he was doing.  In all honesty, I didn’t blame him.  He was miserable.  He wasn’t able to be the person he once was.  Within a day or so, he was moved from his home, to a hospital for his final days.   I hated that decision, but looking back, it was the best decision.  My husband and I took turns going up to see him because we didn’t want our son to see his grandpa like that.  Yes, my parents lived close, but, it was also hard on us seeing him like that everyday.  The day he passed away, we had some friends stay the night the night before.  They were getting ready to leave, and we were both going to see him, and we literally had one foot out the door.  The phone rang and I ran to get the phone and about dropped it when we got a call from the hospital. Dad had passed away.  We couldn’t believe it.  Our friends took our son to my parents and we raced up to the hospital.  Richard’s best friend met us there.  He had been talking to him and Richard asked him to leave.  He was ready to die.  His friend had been in Vietnam and had seen his fair share of the face of death on his fellow soldiers.  He said he saw it on dad.  We felt horrible that he died alone, but yet, he wanted it that way.

It was hard taking care of dad, my son, being a wife and everything all at once.  But, it was the most rewarding at the same time.  Richard, dad, grandpa was all the things you could want in a father in law.  He and I talked about stuff.  Him and my husband was able to bury the past and have a great father son relationship.  He taught me a lot, stuff my dad never did.  I never doubted the love he had for me.  When my husband and I got married, he gave me the biggest hug ever.  I knew then how much he loved me.  He even told my husband when we were dating (I found this out not long ago), that he better not hear of him hurting me.

Looking back, would there be things I would change? Yes.  But only one thing.  I wish I had the resources we have now.  I didn’t know about half of what was out there.  I know that there was nothing more I could do, simply because back in 2003 we didn’t have internet as accessible as we do now.

I leave it like this for now.  Part 2 coming in a day or so.

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