sarahsbeingfrank

Month: October, 2015

The Inmates Are Growing Restless

Mom and Dad and their respective leg issues continue to improve.  Mom walks most of the time without a crutch, sometimes because she chooses and sometimes because she forgets.  We were out for a walk and someone waved at her.  She raised her arm, waved back and her crutch fell to the ground like a fallen tree.  Timber!  We looked at it, at each other and burst out laughing.  We are like a comedy show that most are afraid to laugh at.  Regardless, the surgeon did a great job and her pain has diminished enough that she’s almost off the pain pills.

Dad has been using one crutch, against doctors orders, because he thinks it’s going to make him better, faster.  I can’t get it through his head that we’re trying to prevent a fall.  He wants to get rid of his “attachments” and I can’t blame him.

Dad doesn’t ask for anything so I have to anticipate his needs.  Mom has grown quite comfortable with asking for whatever she wants and it makes me laugh.  I’ve started having her do more around the house and it’s mostly gone well.  She has been washing the dishes, no one does them to her standards anyway, and dusting.  We had visitors last weekend and she wanted me to vacuum before they came even though we’d just vacuumed two days before.  Evidently she wanted the little lines in the carpet for Cindy and her dog, Brad.  I told her it could wait and I’d do it after they left.  She then got the vacuum out and let it sit in the living room, presumably so it would pressure me into doing it.  It did not work.  One other line I have drawn is ironing her sweatshirts and sweatpants.  I love you mom but no.  Just no.

Dad can now drive around town and it’s really opened up their world.  Mom is anxious to resume control and normalcy, whatever THAT is.  I don’t have the heart to tell her that much of this is temporary and fleeting.  For now, a drive past the dog park or a trip to Walmart improves her mood.  The pleasant weather and sunshine greatly impact her disposition in a positive way.  When she starts to feel like a caged animal, look OUT.

It takes them much longer to do anything and they get wiped out easily.  There are many naps happening throughout the day.  I joke about getting them both down for a nap at the same time so I can get some things done for myself but it’s completely true.  Mom sometimes makes comments about the disheveled state of my hair or the fact that I’m often wearing a wife beater.  “Don’t you have anything better to put on?”  It’s tough raising your parents.

The meals provided have already proved invaluable, especially to me.  My parents’ complaints about not needing them have lowered to a low mumble.  They now look at the calendar on the wall where I’ve copied the information and we all look forward to what we’re getting, when.  They still don’t think they need help and they don’t like feeling like a charity case but I keep reminding them that they’ve helped many people over the years and it’s time to let a few folks repay that kindness in a small way.  If nothing else, I tell them it’s more for me than for them.  Dad seems resigned to it.  He looked me in the eyes and said “meals now are better than flowers later”.

What’s next?  Appointments of the un-fun kind.  I’m trying to stay in the moment.  I keep telling myself to not let tomorrow poison today.  I don’t always take my own advice.

How am I?  I’m hanging in there.  I have my hands full managing all of our appointments, running two households and working.  I came back to Des Moines for one night so I could get my own treatment on Monday.  I try to get out for a short walk first thing in the morning and last thing at night to burn off some of the funk that builds up in my mind and body during the day.  It helps.  I have friends in Osky that I can visit when I want or need to and they help keep the crazy in check.  I’m back in Des Moines for a few days to take care of some things piling up and to give all of us a reprieve from each other.  As Dad says, I can’t miss you if you don’t go away!

Thanks for reading, thanks for caring.  My gratitude for my family, my friends, a good meal and a nice cup of tea continue.  Carpe diem.

Meal Train For My Folks

A few people have asked what they can do to help us.  The first thing that comes to mind and seems to be the easiest and most practical for my folks is meals.  I have created a Meal Train for the month of October with the potential to add dates going forward.  They don’t want help, they don’t think they need help, but I know this would make their lives (and mine!) a bit easier and one less thing to worry about for the short term.  It made a huge difference for me in the days after my surgery and I am eternally grateful for those that delivered delicious food to me, amongst all the other help I received.

If you are interested in providing a meal, email me at roxyrolls@rocketmail.com and I will send you the link.  Please save the phone calls for now.  I appreciate those who have reached out but I’m trying to control and funnel information in a manner that doesn’t overwhelm them.  They are normally private people and the concept of anyone doing something like this for for them is quite foreign.

Continued thanks for reading and for your support of me and my family.

And THEN I Stole A Wheelchair…The Saga of Mom And Dad

Mom had knee replacement Monday, August 24th.  The expectation was that she would be in the hospital until Wednesday and then go home.  She stayed until Thursday and then PT recommended she go to a skilled care facility due to…a few reasons.  She’s quite strong-willed and when you couple that with cognition issues, going home to a very stressful and demanding home life, attempting to manage and care for a paraplegic son and an 84 year old husband with his own health issues is not a good situation.  Recipe for disaster, actually.  I agreed.  Dad agreed.

I scrambled to find a suitable place in under 24 hours.  Thank goodness Jana was able to recommend The Life Center and it had an opening.  Telling Mom where she was going and why went exactly as you’d probably expect.  She was not happy.  But, it was for the good of all involved, especially her.

Dad stayed with me while Mom was in the hospital.  It was one-on-one time together that is rare for us.  I made him tea and breakfast every morning.  He read the paper while I worked.  We talked over dinner about the things that we scarcely have the chance to.  I put the dishes away out of the dishwasher while he was watching the news and realized something was missing.  There was an empty space where a wine glass should be.  I looked around the kitchen, then in the dining room and even in the living room.  Nothing.  Was I finally losing my mind?  It was no where to be found.  When I walked into the bathroom, there it was, on the back of the toilet.  Dad had been using it as a mouth rinser-outer when he brushed his teeth.  Sounds about right.

Mom and Dad have been married for 55 years and held traditional roles, divided duties.  There are many things around the house that only one of them would do and Dad encountered a few of the ones that had never been on his list after he returned home and Mom was away.  Such as the washing machine.  And the thermostat.

Dad:  Sarah, where is Mom’s purse?

Me:  I don’t know Dad.  Have you checked all of her usual spots, doorknobs, clothes hamper, etc.?

Dad:  Sarah, where is the checkbook?

Me:  Probably in Mom’s purse.

Two weeks of daily physical and occupational therapy along with speech therapy (works with memory) a couple of times a week was good for Mom even if she didn’t like it.  For the first time in a long time, she was not in charge and she was NOT pleased.  I tried to ease the transition and usually visited 2 or 3 times a day, bringing her things she asked for and doing her laundry daily.  She had a busy schedule and she adapted after a few days but only under the circumstances that after two weeks, she was going HOME.

How a person in a situation such as this likes the food can make a big difference.  Most of the time it was OK and she didn’t hesitate to let me know when something wasn’t up to her standards.

Day 1

Mom:  This iced tea is terrible.

Day 2

Mom:  This iced tea is the worst I’ve ever had.

Me:  Well, don’t drink it.  You have other things to drink.

Day 3

Mom:  I’ve never had such awful iced tea.

Me:  *takes saran wrap off the top of the glass and sniffs the contents*  That’s because it’s prune juice, Mom.

After a week or so, PT pulled me aside and asked about home again.  After painting them a picture of what she deals with on a daily basis and her known memory issues, they recommended that she go to transitional care such as assisted living for an additional 30 days after she left.  Oh boy.

I talked with Dad about moving her to assisted living for a short period of time and despite paying the out of pocket cost, we both decided it was well worth it even if Mom hated it.

Dad:  Who makes this decision?

Me:  We do.  At this point we have to decide what’s best for her and if we don’t take her home, she’s not going anywhere.

We needed to give her knee a chance to heal enough that it wouldn’t be critical if she couldn’t remember all of tasks and movements they were teaching her to keep her safe.  We needed to keep her in a controlled, non-stressful environment that could help her heal for the time being.

This conversation was even more excrutiating than the last.  She insisted she was going HOME.  I’ve never seen her in such a state of mind and it was gut-wrenching for Dad and me.  But it was decided.

The Friday before Labor Day at 5:00 PM I started my frantic search for an assisted living facility that would suit our needs and hopefully Mom would enjoy.  I settled on 3801 Grand and asked them if they could accommodate her for 15 days.  I think 30 might have completely pushed Mom over the edge and her knee was doing quite well.  Actually, all of her was doing quite well.  We kept the stress to a minimum and didn’t involve her in the daily goings-on of home and it seemed that at times, her memory improved.

We moved her into her bright, cheery new short-term digs and she settled in.  I kept up my 2-3 times a day visits and she adjusted quite well.  They have a very nice facility that suited her; lots of windows, old trees and plenty of activity to watch or participate in.  She usually liked the food but really enjoyed the dining room, it’s view and the people she sat with.  She had more freedom and could walk outside and loved looking at the buildings and homes near her.  She became as calm, peaceful and stress-free as I’d seen her in decades.  Her memory was as good as I’d seen it for many years and even some of her old personality that had been shoved in a far corner was re-emerging along with her sense of humor.  We spent a lot of time walking, sitting on the patio and just enjoying each other.  I am so grateful for those days.

My decision to have her stay 15 days, until September 25th, was not random.  Dad had all of his follow up appointments at Mayo on September 24th.  We decided that it would be best if just the two of us even though Mom would not be happy.  I didn’t bring the appointments up but she remembered a day or two before we left.  She grumbled but she accepted that we were going without her.

Dad and I took off after work on the 23rd.  It rained as it always seems to on our drives up.  We checked into our hotel, unloaded and then headed down to the Co-Op to grab him a bite to eat.

His hip has been bothering him more than normal for the last month or two.  He was having some pretty serious pain around his IT band and we were getting desperate.  Nobody seemed to be able to do anything for him.  Cindy had taken mercy on us and used her massage therapy skills on him to see if she could alleviate some of his distress.  And it worked!  Not completely but it improved.  I tried working on him in the same fashion every time he came up to visit Mom.  It seemed to help.

BUT….

After Dad and I got back to the hotel, checked out the game room, drove some race cars, the air hockey game was still broke, we headed back to our room.

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We were both spent.  I went in the bathroom to wash my face.  The next thing I heard dropped my heart to the floor.

Dad was yelling, gasping in severe pain.  I sprinted back to him.  He was still sitting on the edge of his bed but in serious distress.  In a split second I looked him over but could see nothing that would lead me to the source of his pain.

Me: I’m calling 911.

Dad, crumpled red face:  No, it’s my hip.

What?  He was in the same place I had left him less than a minute before.

Me:  What did you do?  What happened?

After giving him a couple of minutes, the pain started to subside and he could talk.  He had taken his left shoe off and then put his left foot behind his right to push off his right shoe at the heel.  That’s when something in his right hip snapped.  I suggested going to the ER but he said he was feeling better.  I repeatedly looked him over because I wasn’t trusting his words at this point.  He did seem to be relaxing so I was inclined to let him stay with me in the room and see how he felt in the morning.  We really needed to get through his urology follow up appointments, we were two months overdue, and we’d arranged many things around making them happen.

The next morning he tried to convince me he was better but I wasn’t completely buying it.  He wanted to go down for breakfast on his own but I went down with him.

We made it to the first two appointments without much hassle.  There was quite a bit of walking in between and it was slow-going but we managed.

The third appointment was a urogram and chest CT.  I waited with him until they called his name and then took off to check out of the hotel when he disappeared with the nurse.  I came back an hour later and she was pushing him into the waiting room in a wheelchair.

Me: What happened??

Nurse: He went down in a chair.

Dad:  My leg gave out and I just kind of…went down.

Me, looking at Nurse:  Now what do I do with him?

Nurse:  Blank stare, shoulder shrug.

Me:  We need an X-ray, how do we arrange that?

Nurse:  Get the doctor he’s here to see to order one or take him to the ER at the other hospital.

I looked at him in the wheelchair.  He wasn’t getting up.  I got behind him and away we went to beg his urology surgeon to order an immediate X-ray that had nothing to do with his follow up visits.

After a very confusing conversation for the urologist’s nurse, she got it scheduled for right after lunch.  I pushed Dad down to the cafeteria, parked him at a wheelchair accessible table and went through the line to get us some food.

We headed to X-ray as soon as we were done and they took him in almost immediately.  Getting him prepped…..was a challenge.  He was already in discomfort and this was just going to make it worse.  His right leg was fairly useless and painful if he tried to move it.  I stayed with him the whole time, even when they were taking the X-rays.  I was not leaving him again.  The tech just threw an apron over me.

We headed up to meet with his urologist after we got him dressed and back in the chair.  Nothing was happening fast except me pushing him around once he was settled in the wheelchair.

Emily, one of the urology team members met with us first.  She read the X-ray report which was already done.  It confirmed a displaced avulsion fracture.  I was relieved and concerned at the same time.  At least we knew what was wrong.  But what do we do about it?  I asked Emily to request an ortho consult while were there and she did although they would not squeeze him into their schedule the same day.

Onto the reason we were there.  We reviewed the CT with Emily.  It showed a new mass that was not there during the last scan and it’s in the same spot the cancerous bladder resided.  Sigh.

Dr. Thompson, the head surgeon came in and we walked through the scan with him.  He recommended a biopsy to see exactly what we’re dealing with.

Dr. Thompson:  Well, you can’t outlive everything.

They couldn’t do the biopsy the same day but they were able to squeeze it into the schedule the next day.  Once we were resigned to staying another night, I realized I didn’t know what I was going to do with Dad.  He couldn’t walk.  He didn’t have crutches.  I wasn’t sure how to get him back to the hotel for which I no longer had a reservation.  It was 4:50 and the clinic pharmacy closed at 5:00.

Me: Dad, hold on.

We were off and rolling, intent to get to the pharmacy before it closed to get him some crutches.  We made it in as they were turning off the lights but managed to buy a pair at the last register open.  Now what?  I called the hotel and their shuttle could accommodate a wheelchair so we told them to pick us up.  Stealing a wheelchair, it is.  I rolled him into the room and parked him between the beds and told him he was to stay put.  I was concerned about him falling or causing himself pain that I couldn’t alleviate.

The next morning I was also concerned about the biopsy causing him pain due to the precarious spot they would be sampling.  Joel, our RN was great; patient, thorough and appreciated our sense of humor.  Joel and the two techs let me stay with Dad while they prepped him and we chatted about everything and nothing.  They were very careful with him and respected his fragile state.

Me:  Dad, they said I could run the saw.

Tech:  I don’t think we’re going to need a saw for this.

Me:  OK, maybe next time.

When the procedure was complete, I rolled Dad out to a nice sunny spot in front of the building, locked his brakes and took off to retrieve the car.  Time was of the essence.  I wasn’t sure what to do with Dad, if he should be in a hospital or if he was OK to be out and about with the rest of the world.  I had done some research on the type of fracture he had and it sounded like it could go either way.  I was hoping to get him back to Des Moines and into his own orthopedic surgeon before his office closed for the weekend.  It didn’t happen.  We were about 30 minutes past when they would see him.  I made Dad a deal that if he wasn’t in pain and he didn’t do anything stupid, I wouldn’t take him to the ER and we’d cross our fingers until the ortho could see him on Tuesday.

After much conversation, we decided to pick up Mom.   It was the day she was expected to go home and we decided I would take them both to their house in Oskaloosa and I would stay with them, as I had already planned on doing.  I just wasn’t planning on two people gimping around.

Mom felt good on Saturday and completely overdid it.  She is still paying for it, more pain than she was prepared to handle.  Both of them are on crutches.  Neither of them can drive.  Sarah’s Assisted Living is now open but already at capacity.  Duties include but aren’t limited to cooking, driving, sock and shoe put ‘er on ‘er, drug manager, toenail trimmer, hair cutter, laundry doer, grocery getter, leg massager, walk accomplice and repeated question answer-er.

I’m working from their house and it’s gone OK with the exception of the train that runs daily that is just a few short blocks away.  I’m sure the conductor is getting paid by the horn blow.  It makes for interesting conference calls.

Their house is the one I grew up in and the only place they’ve lived since I’ve existed.  They lived for 10 years across the street before that.  The town, the neighborhood feels very small to me; at times weirdly familiar like time has stopped, at times like I’m a stranger in my own land, at times comforting, at times suffocating.

Tuesday we made it to the ortho office, both of my folks on crutches.  We get a lot of WTF looks, even in the waiting room.  The ortho explained that the tendon on the inside of Dad’s hip pulled off the bone.  That spot had deteriorated and snapped apart when Dad put pressure on it.  He’s supposed to continue to take it easy, use both crutches and I’m pretty sure he also said not to do anything stupid. I packed them both in the car ever so slowly and we were off.

I knew we’d get biopsy results by Wednesday but I wasn’t in a hurry.  I knew it would be a game changer.

Mom, Dad and I were going for a walk around the block when the cell phone in Dad’s shirt pocket rang.  I pulled it out and looked at the number calling.  Mayo.  Sigh.  Here we go.

Emily asked if now was a good time to go over results.  She confirmed that it was a recurrence, that the mass consisted of the same bladder cancer cells that ruined his bladder and caused him so much pain and overall distress earlier this year.  Surgery is not an option.  Radiation is not an option.  They set up an appointment with medical oncology to review what, if any, options there are for chemotherapy.  I thanked her for her time and hung up.  We were still a block from home.  Our slow little handicapped train made it up the driveway before I shared the news.  Dad slumped on his crutches.

We went inside and I attempted to explain what I knew, what would happen in the short term and repeated that nothing was going to be decided tonight.

For now, we’re taking care of the immediate needs, the day-to-day stuff.  That’s all we can do.  That’s all I can handle, at least for now.

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