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Saturday, July 20, 2013

20 - What are your plans?

For anyone "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you'll take the time to go back and review my earlier posts so you can catch up with my story. For anyone who has been along for the whole ride - Thank you!

What are your plans?

"What are your plans?" they wanted to know.  I told the Palliative care team about the trips we had been making and the trip we had planned.  Just like some of you reading this blog, they probably thought I would NEVER quit talking.  After explaining all of our adventures so far, the doctor just stared at me.  I'm not sure he believed all the horrible things we had been through (trust me, I've spared anyone reading this a LOT of the grizzly details!).

"I guess I better start canceling those appointments", I mumbled.  It had taken a LOT of planning; begging; and coordination to get all those appointments in the same week.  They told me to wait a few
days and see what happened.  They thought it was important to get mom to these appointments even if it was a five hour drive.  They told me they would "try" to help facilitate that happening.  I really hoped they could help.

Within just a few days moms morphine dose was increased AGAIN.  The Palliative Care doctor still felt that mom could have some quality of life if they could just figure out what was causing the pain.  He still felt that we should plan to try to keep our scheduled appointments.

Another couple days, another increase in pain medication.  I was astounded that mom could even
hold her head up, let alone carry on a conversation.  That seemed like a LOT to me!  They also started her on another medication, Neurontin to try to calm the "burning" in her legs. I wondered when that had started, why hadn't mom said anything about burning in her legs?

Less than 24 hours after this new medication was started I noticed mom was not quite "with it" and was told that it was probably the Neurontin, "it has to build up in the system and might take some time for her to adjust to it", I was told, "we're monitoring her".  She had been started on the lowest dose available, which would likely need to be "increased over time", I was told.

The pain was being semi-controlled with the morphine, enough so that mom was able to get up & take a few steps with her walker.  "She seems to be really unsteady and leaning to the right", I observed.  I also cautioned about too much weight bearing on that knee, "I really want her to be careful so it doesn't completely give out".  She didn't seem to be as aware of the knee (or much of anything else) as she had before the Neurontin.  "We'll keep an eye on it", I was assured.

On Friday afternoon several members of the Palliative Care Team came to moms room.  They wanted to make sure I was still planning on getting mom over the mountains and to those appointments.  It was the "best chance she had" according to them.  I wanted to, I just didn't know if it was going to be possible.  I didn't even know how long she would be in the hospital.  After some back and forth conversation about the logistics, a plan was hatched.

Mom would stay in the hospital until Sunday afternoon. When I had everything in order & was ready to get on the interstate we would load mom in the car and get her there as quickly as possible.

If I needed anything else I was to call before 5 on Friday.  If it was after 5 or over the weekend I was to call the number on the card they gave me and "someone would help me", the inpatient team would be gone at 5:00PM on Friday and would return on Monday morning.

Who could have known that at 5:15PM on that same Friday our world would once again be turned upside down?

After spending most of the day at the hospital I needed to run some errands and make some phone calls. My aunt & uncle would stay with mom until I returned.  Mom didn't seem to be in as much pain with all the morphine on board - she didn't seem quite as coherent either.  In fact, in just a few hours, mom had gone from fairly "clear headed" to near dementia.

As much as I hated mom having to stay in the hospital for the weekend, I figured it would give me a chance to prepare our trip.  I got as much as I could get done that afternoon and returned to the hospital just before 5:00PM.

When I walked in to mom's room I could tell she was furious about something.  My aunt was trying to calm her and looking fairly confused herself.  Mom babbled something about them "trying to kill her" and that "nasty" doctor.  "I do NOT have dementia" she insisted.  My turn to look confused.  My aunt wasn't sure exactly what had happened, they had stepped out for just a few minutes.

By the time I was able to figure out what was going on, it was AFTER 5:00PM - I better find that "after hours" number the Palliative Care team left for me.  I did find it, only to be told by a very nice woman that she was sorry, "You need to talk to the inpatient care team" and  "They will be back on Monday". Great, just great.  Now what what I suppose to do?
I found the "nasty" doctor mom had referred to (She was actually a NP).  She was condescendingly sweet as she told me what a "good job" I had done with mom, but that I needed to stop all the searching for answers.  She gave me a hug as she cautioned me about "wasting the time we had left". "Her dementia is getting worse very quickly", I was told.  HUH?  I know mom seemed confused this morning, but when did "dementia" become part of the picture?  I didn't know if dementia set in that quick, I always assumed it was something that kind of "crept up on you".  Something else for her "permanent record" I mused.  But, I was not AMUSED!  Somethings wrong.  Every thing's wrong.

The NP went on to tell me that she was "very familiar" with Hospice and she felt that's where mom needed to be.  I couldn't believe what I was hearing, mom had just had a Hospice evaluation and didn't "qualify".  I tried to explain to her that the palliative care doctor had just said a few hours ago they were going to keep her until Sunday and then I was planning on leaving for her appointments.

The NP asked what I hoped to gain through those appointments.  Without letting me tell her what I hoped to gain, she said, "A spine doctor will just want to do surgery and your mom is not strong enough to withstand that" (I seemed to hear that a lot).  Then she handed me a BUNCH of prescriptions that I should go fill before coming back for mom.  She was now in charge of mom's case and she was discharging her today.  Her parting words were, "You'll feel better if you just let go", then "Do yourself and your mom a favor and call Hospice", she said.  Would I really feel better?, I wondered.  I wanted to do what was right for mom.  I didn't want her to keep suffering so badly.  I was so confused.

I switched to "automatic pilot" and went through the motions of getting moms prescriptions and taking her home.

Who could have known that I would be writing my mother's Eulogy, or trying to that night?

It's hard to read through tears & did you know ink smears on wet paper?

Could I even do this?  I wasn't sure.

Can things get any worse?  You would think I would learn to quit asking that question!

Can I possibly feel anymore helpless?  I didn't think so.

I'm just not certain anymore, what should I do?


Sharon Cattermole said...

My heart truly goes out to you. It can be so frustrating dealing with a sick relative, medical professionals and trying to get the support they need. Do you have any carer support networks in your area? (I havent had a chance to read the rest of your posts) I truly hope things improve. You only want is the best for you mum at the end of the day.

Annett Bone said...

I am still amazed at the diversity of heart felt topics covered on the blogs that I am finding through UBC. My first thought is that I commend anyone that is taking care of elderly people. It is not an easy thing.

Annett Bone said...

I am amazed at the number of heartfelt blogs that I am coming across on the UBC. I commend anyone that is taking care of elderly people. It is not an easy thing but it says a lot about you as the caregiver.

healthcare hostages said...

Yes, it can be very frustrating. I have not been able to find many resources in our area.....they all seem to be a dead end for one reason or another. Sometimes I feel that mom would get more help & there would be more resources if I were not there......I've heard more than once that things "might be an option, but since you are so capable......." It's definitely irritating!

Yes, I only want what's best for mom!

Thank you for your comment and kind words.

Have a wonderful day,


healthcare hostages said...

I thought I was the only one bearing my soul through my blog, but I have also run in to some very heartfelt blogs on UBC as well as a number of other sites.

Senior care giving can be a challenge. Care giving for anyone can be a challenge.

Thank you for your kind words.

Anita Scott said...

What did you do? What did you do????? You left me hangin'! That's what you did...on to the next! ;)

healthcare hostages said...

That's the plan!

healthcare hostages said...

Thank you for taking the time to read my post and thank you for your kind words.

It's not an easy thing, but I'm glad I did it.