Wednesday, March 12, 2014

The kindness of friends and strangers

Sunday night while I was writing my blog post, there was a crash from upstairs at my dad’s.  I ran upstairs and found Dad on his knees in the bathroom.  He was having problems (again) with his colostomy and while attempting to deal with it, he had slipped and fallen.  Again.  I should add that I also found out earlier in the day that two days before I took him to the hospital, he had fallen in the driveway and was so weak, he couldn’t get up.  He was able to flag someone down who helped him.

This time he was able to get up on his own, and I helped him deal with his colostomy problems.  Then we got him back into bed.  It was stressful and I started to worry that the home health aide who was starting on Tuesday wouldn’t be enough.

Monday morning, Dad seemed kind of tired and drained.  I was tired and drained too because I woke up every time he went to the bathroom in the night, worried he would fall again.  The visiting nurses came at around 10:30am, and at first Dad seemed to be doing okay, but then things unraveled.  While in the kitchen, discussing his medication with the nurses, he had problems with colostomy.  I should explain that Dad got the colostomy as a result of his bowel resection surgery 5 years ago when they had to remove the enormous tumor obstructing his colon.  He has handled it very well and completely independently the entire time.  But starting in January on this new med that caused the diarrhea, the colostomy began causing him a lot of problems.  A LOT of problems.  For a man who has managed his situation very well to go from that to periodically leaking in front of strangers, well…. I think it’s understandable that he gets very upset about the whole thing.

One of the problems with my childhood home is that it is quite old.  It only has 1.5 bathrooms, and the downstairs bathroom is a very small half bath. Dad can’t really use it to deal with his colostomy.  But the nurses helped him, and then I set about cleaning up because now there was a huge mess. Then the leaking continued.  The nurses helped Dad get upstairs, but getting upstairs requires that Dad leave his walker (which he just got this week), and use a cane to sort of mountain climb his way up the stairs.

The entire process was exhausting for him and he had to sit and rest in the bathroom.  The clinical manager pulled me aside and basically said – your dad can’t be here.  He shouldn’t have been released to home from the hospital, he should have gone to a rehab facility.  I told her that the physical therapy consult at the hospital claimed he was strong enough in the report.  Welp, maybe he was strong enough to take 80 steps in a hospital setting without stairs, but that was very different from being strong enough to come home.  And even with an aide coming in, it wouldn’t be enough.  It was a matter of safety – Dad was going to fall and he just couldn’t manage at home right now. 

“What do I do?”  I asked the nurse.  She said she’d call the case manager at the hospital and see if she could get them to help.  The hospital people were resistant.  They weren’t inclined to help now that Dad wasn’t their problem anymore.  But the visiting nurse manager basically cajoled them into it.  Mind you, the help they provided was limited, but in the end, I was able to get a list of rehab places, and they agreed they would send his files over to whatever place I wanted to send him.  I spent the next hour researching rehab facilities and calling them to see if they had a spot.  A lot of the better places were full.  But I finally found a well-rated facility with an open spot.  I got Dad’s oncologist to fax over a prescription for the rehab, and the hospital sent over the inpatient report (Medicare will pay for rehab in certain circumstances, and one of the requirements is that you have to have been in a hospital for at least 3 nights…. Dad was in for 4).  And then I proceeded to freak out that they would refuse him because of that damn PT report.  In the end, they took him.

Dad spent the afternoon in bed, and when it was time to go, I helped him up, packed up some of his stuff, and got him into the car and to the rehab facility.

It was a rough day.  I never showered, I spent way more time than I ever thought I would cleaning up diarrhea, I didn’t have much time for food or water.  And I cried off and on all day.  I guess there's a joke in there somewhere about how that's what it will be like when I have a newborn, but there's nothing joyful about this process.

When we got Dad into his room at the rehab facility, I started to cry.  “I feel like I’ve failed you.  I feel like I should be able to take care of you at home, but I just can’t.”  My dad reassured me that I never fail him.  But it just felt so sad to leave him there.

Rehab is the right place for him right now.  He is safe, he doesn’t have to worry about doing anything but resting and doing his physical therapy (which he likes and finds helpful).  We’ll see how it goes.  Hopefully he’ll be able to return home at the end of this, with one of those Lifeline buttons and a home health aide to assist him in his daily living activities.

March is Colorectal Cancer Awareness Month.  If your parents are over 50 and have not been getting regular colonoscopies, please refer them to me.  Please ask them who is going to take care of them when a preventable form of cancer eats away at them.  Colonoscopies are safe and they save lives.  There is no reason not to get one if you have insurance, and if your parent is over 65 and on Medicare, then a colonoscopy is covered.  My dad beats himself up all the time about his refusal to get a colonoscopy until it was too late.  Trust me, you and your parents – they don’t want to be us in this situation.  This situation is the worst.

But what about the title of this post?  Where’s all the kindness from friends and strangers?  This post is mostly about a really, really bad day!  I’ve felt so alone in all of this.  But there were people who made me feel less alone, and I am so thankful.
  • To Lauren, an old college friend, who is an elder law attorney.  Years ago when Dad got sick, she drew up all the paperwork we needed – advance directive, power of attorney, will, etc.  I finally told her what was going on, and she called me first thing Monday morning.  I told her I was totally confused by hospice and whether Dad could be home or not when the time comes.  “Don’t worry.  We have a lot of options, we’ll figure it out.”  She’s been helping me all week and reminds me that I have someone with a lot of information at my disposal
  • To Liz and Vinny, Kate’s parents, who let me come over and spend the night at their house on Monday because I didn’t want to be alone in Dad’s house.  They fed me, and offered a lot of advice (they have taken care of sick, aging parents so they know where I’m coming from) and let me cry, and then made me laugh.
  • To Anh, who sent me a giant chocolate and peanut butter cake from Baked, my favorite bakery so I’d have a treat.  
  • To Mary, Dad’s oncology nurse, who got Dad’s scrip for rehab faxed over in 5 minutes with no questions asked, and who called the next day to check in and make sure he had gotten into a good place.
  •  To those visiting nurses, who went to bat for us and got the hospital to help us, and who called at the end of the day to make sure I had gotten Dad into a place and reminded me to eat and drink something.
  • To the lady who runs the home health aide service who worked so quickly to make sure Dad would have an aide right away, even though we didn’t need it in the end.
  • To everyone who commented on my last post – I wanted to write back, but I just haven’t been able to.  I’m so grateful for your support and your kind words, and they meant a lot as they came in throughout that day.   
I'm home now, and even went into work today, which was nice.  I hope the next week is better for both Dad and me.  

5 comments:

  1. Sending a virtual hug that lasts as long as you need and whenever you need. I wish I could be more there for you - but I am pretty sure that a chocolate peanut butter cake for a pregnant woman is a pretty good substitute. I'm here *whenever* you need. xoxoxo You are such a good daughter Megan. Never doubt that. You're the daughter your dad deserves. And that is saying a lot. <3

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  2. Wow so much to deal with! I'm glad you had help around you and he's going to get the time and help he needs. Continued prayers!

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  3. Oh gosh Megs, I'm so sorry I missed your last post because I've been kind of a-wol. The rehab will at least give him the care he needs...you need a break! It's not fair that you have to spend your pregnancy with this kind of weight on you...your sister should be helping too! You really are an amazing daughter, and I continue to be amazed at how well you're handling this all. I just hope that you get some time to yourself too, to enjoy this pregnancy and take care of you. Maybe, with your dad at this facility, you'll get that. Sending hugs!

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  4. Oh Megs. You are a wonderful, caring and amazing daughter, your dad is lucky to have you. I know it's so hard, but it sounds like rehab is the best place for him right now, and these are such tough decisions, but you can't feel guilty or second guess yourself. Sending you love and strength, please try to take care of yourself.

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  5. Hi Megs ! This is Kathy frm Miam and untill now I have been just following your blog. This post you just put on here hit me so hard and I was compelled to write you because my dad too had a colostomy bag and at that time I ws 19 and pregnant and my brother's wife would help him with bathing . He passed when I was just 3 months pregnant and I miss him stil to this day . It was back in May of 1979 so that was a long time ago but if I had a chance to go back I would spend as much time as possible . You are a lovely woman. All the best to you !

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