Tuesday, July 23, 2013

Okay, okay, I get it, I'm sick

Thursday night, the phone rang.   It was my sister, saying my 83 year old father was very sick and she wanted to let me know.  He was at home but had been having bloody diarrhea for a week.   She suggested he go to the hospital, but he refused.

I called him.  He answered, but sounded very out of it. Difficult breathing, long pauses between words  - the weakness was leaking through the phone line and I could literally feel it.  I knew this wasn't good.  

He sounded like me the day I went septic from c-diff.

I told him he needed to be hospitalized, and now.  Many of you know that I don't rush to the hospital often, and my doctor has agreed with me. I don't automatically tell people "Go to the ER."   But there are times when you have to go and this was clearly one of them.

He said, "I (deep breath, long pause) am  (deep breath, long pause)  going  (deep breath, long pause) tomorrow  (deep breath, long pause) at  (deep breath, long pause) 10:00 a.m. (Pant pant pant)  I asked him why he was waiting.  He had no good explanation.  "Because I am."   I again told him he needed to go right now; I was not sure he would be alive in the morning, it sounded like he was headed towards shock.  I asked if anybody could take him - I asked if I could call an ambulance.  He was worried about his dog, so I said "Go to to the hospital and I will go up tomorrow and stay with your dog."  I was not going to let it go unless he went, and if he had said no, I was going to call an ambulance anyway.  He resisted.  I know he's afraid of hospitals and doctors, so  I explained what would happen:  they would intake him, give him IV fluids, likely do a CT scan to see what was happening.  He would feel better with the fluids and then be able to be treated.  He would not get better at home.

If he didn't go, he would get septic and die.

He must have been feeling as bad as he sounded, because the stubborn old man agreed; I'd broken down all his objections, and knowing what would happen in the hospital helped, I think.

Now, to backtrack:  I have not been able to go see my father in a year.  He lives three hours away by car, which is the only way to get there.  He lives in the mountains, which means the roads are often closed during the winters and medically, I can't take the chance of getting trapped up there, so summers are the only time I can go.  I believe the last time I saw him was in July of 2012.

I have not been healthy myself after four years of chemo; the ride is long and exhausting and it just takes a lot out of me.  There is one other reason:  my father is an alcoholic. Visiting him means going to bars which I don't like to do, and it means watching him get drunk, and it means meeting his alcoholic friends instead of talking with him.  It seems pointless to go when he is always surrounded by people.

Our relationship has faded.  He has sometimes became nasty on the phone to me when drunk.  After the last time, I finally drew a line:  I told him I loved him but I am at the end of my life, and I can't tolerate any more drunken conversations, especially ones that outline my past faults, which I can do nothing about (even if they were true).   From that moment on, he was only to call me when he was sober.  Because he begins drinking at 9:00 a.m., I would not call him, but would be happy to hear from him at any time after I get up at 10:00 or 11:00.  I told him that calling me sober meant no alcohol on board at all, not the couple of drinks that he thinks is like morning coffee.  I said I hoped I'd hear from him.

I didn't.

It hurt my feelings that he never once considered waiting to have his first drink so that he could call his terminally ill daughter.  But, it also was something, growing up in an alcoholic family (my mother died of alcoholism) I never expected would happen, so was not surprised.  Alcohol has always come first.

There.  The "secret" is out.

But of course, he's my father, I love him and I don't want him dying on his living room floor.   I wanted him to get to the hospital.  Right after our phone conversation, he called his neighbor as promised, and they took him to the ER.  I kept my bargain and went up the next morning.  My husband had to work so I took my older son with me.  After a nice visit with a CHP officer which will probably cost me $400, we arrived at the hospital, where I discovered that on this very frail man  - so frail that his entire upper arm was bruised dark purple from the blood pressure cuff - their method of first line diagnosis was to do an endoscopy and colonoscopy.  I felt a CT scan should be done first to see if they could diagnose him without invasive methods.  I went to the nursing staff, found his nurse and explained my concerns and asked if I could talk to a doctor.

She was immediately defensive and rude. "Are you a nurse?"  I shook my head no.   "So, you aren't a nurse?" implying I had no right to question his treatment.   "No", I said; "I just have been a patient for a long time as I have metastatic breast cancer."  She smirked at me and said she'd give the doctor my message.

Uh oh, she just labeled me a bitch.

The doctor did call and we had a vigorous conversation.  He said he'd been doing his job for 30 years, that he thought this was the best method of diagnosing what was wrong.  I said that my understanding was that they thought he had some ulceration in his colon and that I knew there was a risk of perforation with colonoscopy, and that my dad seemed so fragile and weak that I was concerned about the anesthesia as well as the procedure, and wanted to know why they didn't start with a CT.  He said that the contrast would not be benign and there were risks with that too.  I said that I thought the risk were more with the tests he wanted, but after some back and forth, he convinced me that he was on the right path, so I felt better about their methods.

But then not an hour later, they changed course and decided to do the CT.  I am not sure why as I wasn't in the room when they came to tell us.

What it turned out to be was a colon infection along with symptomatic anemia.  They gave him a blood transfusion, put him on IV flagyl as well as two other antibiotics and treated his alcoholism with valium and IV vitamins and nutrition, which they called a "banana bag".  He was also dangerously low on potassium and severely dehydrated -  his idiot primary care physician had prescribed long-term Lasix for an alcoholic without recommending potassium supplementation.  The GI doctor came in and shook my hand and I apologized, saying I didn't meant to question him but I was concerned.  He said that I should question, and it was good to talk to somebody who knew what they were talking about.  All I have to say about that  is I wish I didn't know what I was talking about.

So, for the next four days, I sat in the hospital, seeing that my dad got the care he needed, that he was put on the pot promptly and not left there, that he got changed and bathed - everybody in the hospital needs an advocate when you can't care for yourself.  I spent time calling around and arranging for 24 hour home CNA care for when he was released, talking to his helpful case manager, Kelly and getting home PT as well, and sending my husband (who came up the next day) out to get portable shower stools and pottys for bedside.   They wanted to release him to an assisted living place but my Dad was adamant that not happen, so it was critical I find 24 hour care.

Like all hospitals in my experience, you get great care and you get terrible care, depending on which nurse you have. Andi, his day nurse for four days, the one who needed me to be a nurse to ask a question,  was lazy and sometimes rude.  She only came into the room once per shift, and trust me, Carson-Tahoe hospital is not a busy hospital compared to the ones I've stayed in. (In my experience, the RN should come in once per hour.) The hospital was silent and empty and nothing like UCSF or even Mercy in Sac, and every time I walked to the desk, they were sitting there chatting.

There was one time when the woman in the next room started screaming "Help, Help!"  The housekeeper was in our room and she said, "Oh the nurses won't pay any attention to that" and they didn't.  We were near the nurses station so it was impossible not to hear, but they seemed to spend a lot of the day gossiping with each other, and why get up from your conversation about the Royal Baby for a patient who is yelling for help?  The housekeeper didn't go see either, she kept mopping.  My husband and I couldn't stand it, and he went to see what was happening.  There was an elderly lady, lying on the floor, having fallen out of bed.  If my husband hadn't intervened and got the nursing staff, she may well still be there yelling "help."   When my husband said "there is a lady on the floor in here"  about six people came running so it's not like they weren't around - they were just doing exactly as housekeeping said:  ignoring patients who yell.  God forbid you don't push the button.

On the other hand, all of the night nurses were amazing, one in particular, whose name I didn't know because I had to leave for the day before I met her.  She spent two hours talking to my dad about his drinking and suggesting that to be successful in recovery that he move to live with one of us, and she even called my sister to make sure that was possible.  (It always has been.)  She told my sister than she didn't usually spend 2 hours with patients but something about my dad made her want to do it.  He can be quite charming.

Jacob, a CNA, was super caring when he came to do my dad's toileting, a frequent job as it always is when somebody has an infected colon.

So, you would think sitting in a hospital room, hunting down aides and making phone calls wouldn't be too physically taxing.   You would be wrong.  My first day, I was raring to go.  By my fourth day, I could hardly walk and no way could I have driven home.  My legs were shaking, my knees barely held my weight and I was simply exhausted.  I felt hollow, liver pain intense, unable to go on.   I wasn't eating right and the one time I went to get some soup, my dad called freaked out about something so I went back.  I felt pressure to get everything accomplished before I gave out and had to go home, which happened Sunday.  Fortunately, my sister decided to come too, so we crossed paths.  My father has 24 hour care now for the next couple of weeks, and my sister is keeping an eye on them to make sure they do a good job, at least for the next few days until she has to go home. Hopefully, he can recover enough to move in with her in the next few weeks. She has a gorgeous house and a nice private bedroom.

It will be a long recovery but with sobriety and understanding that it is a process and not something that happens instantly,  he will certainly make it back to where he had been before this illness.  It took me 3 months to recover from c-diff.  I was sicker than he is now, but also younger.

Why did I go?  My sister has done all the checking in on my father for the past year and I felt it was my time.  My unemployed brother is too selfish and lazy to help, although he lives just an hour further than I do, so we know that was not a possibility.  In all the four days he was in the hospital, my sibling only called once and didn't recognize my voice when I answered the phone - in fact, he aggressively and rudely questioned who I was:  "Who the hell are you?"  I said, "Nobody you know" and put my father on the phone.

The last two weeks, I'd been feeling stronger, feeling good enough to start picking up around the house, organizing things, getting ready for the exhaustion I hear will happen after SBRT.     But doing something simple like sitting in a hospital took it all out of me.  I now have a recovery ahead of me too.

I am not going to be able to do it again.

I now believe.

I'm sick.  I'm really, really sick.  I guess I never really did believe it before, but it is true.  Even if I feel okay, even if at home I feel relatively normal, and start doing normal things -  I can't do what healthy people do.

It's a hard thing to wrap your brain around sometimes,  that any expenditure of energy can wipe you out for days or weeks.  I'm only in my 50s and this is frustrating.  And, of course, it means that my sister has to do everything in regards to my dad.  I feel like a deadbeat.

My doctor said chemo was killing me.  I think he was right.  I can only hope this SBRT gives me a reprieve, and once I heal from that I can heal from chemo at the same time,  and my body will get to do all the things that my brain thinks it should do, for however long it lasts.  But I realize now that permanent damage has been done and I may never be normal again, even if this SBRT gives me another two years.

Let me say, I'm very proud of my father. My mother's death caused a downhill slide as far as his drinking went, and I imagine it is very hard to quit.  Drinking has been a big part of his life; with all his friends in the drinking world, sitting in bars, partying constantly - so the fact that he is determined never to drink again makes me very happy, although I know it will be a struggle.    He has been told, and it is the truth, that any more alcohol will kill him, and he'll die in a hospital, a place he hated.   He is taking that seriously and I hope that it lasts once he starts to feel better and the memory fades.   Taking the steps to recover at 83 is a remarkable step of courage, and I will look forward to many clear-headed conversations with my dad.


  1. Glad you were able to be there for your father. Don't feel like a deadbeat. You did what you could. You have a reason - not an excuse - why you can't do more. I hope your dad stays sober and it works out well for him to stay with your sister. Once you have recovered from this upcoming treatment, you may be able to occasionally give her a break for a day every now and then. Only people who have been there realize how much even a day means.
    Meanwhile, you did good getting him to go to the hospital. I know how stubborn 80+ year old dads can be, and mine was sober.
    Emotionally, it will probably be better for your dad not to be living alone anymore. My dad went downhill pretty fast after mom passed away.
    Another thing, if there are medical decisions that have to be made in the future that dad fights, you do not need to be the one handle it. Convincing dad that he needs to see certain doctors, get certain tests, or do certain treatments can be very, very exhausting even when you are strong and healthy.
    Wishing you and your dad and your sis the best, in my prayers.

    1. Thank you. I just got a call that he has taken a turn for the worse. I am just not able to go up. He refuses to go back to the hospital so I told my sister to see if she can arrange hospice. He needs more than just somebody to help him to the bathroom at this point.

      Amazing how well he did when he wanted out of the hospital, then just dropped like a stone. I hope he can climb up again but I fear he's done too much damage. :(

  2. This really touched me as I am a caregiver for my 91 year old mom. It is very trying and emotionally draining. I am the only one here and I think she moves better than I do. It certainly is hard with all the side effects from the chemo. My husband is a recovering Alcoholic. When he was drinking he was the same way with the phone calls. His sister in law told me she looked at the caller id and wouldn't answer the phone. He was always rambling and talking about his first wife that passed from brain cancer which made me feel inferior. He is now sober almost 4 years and hasn't touched a drop and even quit smoking 3 months ago with an almost 4 pack a day habit. It took a massive heart attack in order for him to do that. But, people can change and he is a great person now. I am going to a new oncologist on Thursday hopefully this one will do some scans so I know where I'm at with this and if I'm NED for sure or need more treatment. I'm a little nervous. I really wish you best of luck with your SBRT. I love your blog. You are an encouragement and an inspiration. I love the way you just keep going and smile about it.

    1. Mary, thank you for the nice words and I'm unbelievably impressed you can do full-time caregiving with Stage IV cancer. I know for a fact I could not do it. It was hard the few days I was there. I'm very happy for you that your husband has become the sober person you deserve.

      Good luck with your upcoming scans - I know how nerve-wracking they are. I wish you NED.

  3. Wow. There is so much in your post to absorb that words seem pretty inadequate. Just a few - in no possible definition in any language are you a deadbeat. I just hope that your dad makes the effort worth it in the sense that you do have many future and, maybe the most challenging part, clear-headed conversations with him.
    - Ingrid

  4. your post left a lump in my throat. To not only forgive your father, but to travel to take care of him in your fragile state is extraordinary. I've seen that list passed around, I think it's called "what cancer can't take from me". Something to add to that list is generosity. People who exude generosity seem to do so in both health and sickness. Nothing will trample your decency, and that makes me cry.

  5. You know, I'm so grateful that you have the opportunity to forgive your parents when they are alive. I never got that opportunity. I think that there would be a tremendous amount of closure to be able to have those final days, weeks, months...who knows...reaping the rewards of that forgiveness.

  6. A deadbeat ? Hardly. My husband has been hospitalized twice in the last six months for heart failure and surgery. I am reasonably healthy, but found the daily hospital routine exhausting. I too, am glad that you had this time with your father. My father (also an alcoholic) died in his 50's, laying on a sofa in his home. We didn't have a reasonable conversation for years prior to his death. I don't know what we would have talked about, but I with it could have happened.

  7. You are an amazing woman. As sick as you are you find the energy (somehow!) to go and take care of your Dad. Given the history that you have with him, most people wouldn't have bothered. Amazing.

    1. It is never easy dealing with an alcoholic but he is also has a lot of good qualities. People are never just one thing.

      It is up to each individual what they will tolerate. For me, when the conversations started getting cruel, I knew that I wasn't healthy enough to blow it off like I might have done years ago. So I had to protect myself but I certainly gave him the chance to talk to me. It was just a condition he couldn't accept. Hopefully, that has changed.

  8. Ann, I understand how you feel about accepting that you're sick. I try to deny it, and some days it works. Then I'll forget to take a pill and have a huge setback. Do you think there is a sweet spot combination of denial and acceptance that makes Stage IV living tolerable? Let me know when you find it.

    I'm glad you had this time with your father. I wish him well. As you say, it's an uphill battle to recovery.

    As always, you're in my prayers.

    Kate (Kate Has Cancer)

    1. Good question about the sweet spot. I know it is definitely a roller coaster ride with the emotional aspect as well as the physical. I don't think our brains can comprehend our deaths for too long - we know it's there, it'll be coming sooner rather than later, but you can't think about it ALL the time. The better you feel physically, the more it seems to recede.

      Then suddenly, bam. Something like this happens and you realize, no, you cannot do what everybody else your age can and yeah, that's because you have a disease that will kill you. But it's like waves - up and down. And, I find on the days I'm really, really sick, and can't get out of bed or function? I am not worried about it at all. Life becomes more distant.

  9. Ann you are a beautiful writer, wise, funny and refreshingly honest. I keep reading your blogs because somehow they keep drawing me in,even as they sadden me at the same time.

    A stage 3 breast cancer survivor from Toronto, Canada who wants you to get as much time as you can in as much comfort as possible!

  10. I admire you so much, Ann. You are so clear, brave and strong. I admire you even more after learning obstacles you've had to overcome from your family of origin. You handled this situation so beautifully, and I hope your father gains the clarity to realize what a gift you are.

  11. wow, having been through the alcoholic parent/sibling thing, I would not have chosen to go. good for you that you did what you felt you needed and wanted to do. best of luck to your dad but most of all to you.

  12. You will always be grateful that you did that for your dad, as hard as it was and as draining as it was. No regrets! Gotta focus on you now, hope he can get it together to get better. Rough road ahead all around. But that's gotta feel good that you were able to be his advocate. Without your prompting and then going there, he might not be here. It's a lovely gift, a great memory, a poignant remembrance no matter how much time he has left. Much luck and light to you as you enter this next treatment phase! Always love reading your blog. So much to be learned. xo

  13. Only a wonderful person and caring daughter would go to the lengths you went to for your father during his latest crisis. I trust he hasn't waited to long to make needed changes in his lifestyle.


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