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Sunday, July 21, 2013

21 - This puzzle was missing pieces

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

After gathering prescriptions and packing moms things from the hospital room, I wheeled her out the front door and loaded her in to the car.  What had been "not too hard" just a few days ago was really difficult today.  Her knee (the one I have been screaming about for months) looked like it shifted sideways at the joint when she stood up, but maybe I imagined it again.  She struggled to get to the
right angle to maneuver herself in to the car. She seemed to be struggling with everything.  I didn't understand why they couldn't figure out what was wrong with her.  The growing list of "diagnosis'" seemed to indicate everything was wrong.  This puzzle was missing pieces.  It was missing a LOT of pieces.

http://patients.about.com/od/yourdiagnosis/a/failurediagnose.htm

I was lost in my thoughts on the drive home.  I had been with other loved ones as they neared the "end of life".  I new things could get a little bizarre right at the end, a little spooky even.  I was trying to prepare myself, but I was definitely in denial.

I kept imagining that we might be able to still make our trip, I thought maybe there was still a chance. The next image that would pop in to my head would be the cemetery where my father and my step-father were both buried.  Then I would be right back to my fantasy of finding the "perfect" doctor - They would find what was wrong with mom and they would, at the very least, be able to keep her comfortable. I knew she wouldn't live forever, but I wanted her to be out of pain for the time she had left.  I still don't know if I verbalized one of those thoughts or not, but I was jerked back to reality when mom asked, "So, are we leaving Sunday or Monday?".

"You still want to go?", I tried not to sound as dubious as I felt.  "You didn't cancel the appointments, did you?", mom wanted to know.  I hadn't had time to cancel the appointments and I told her so.  Of course, then she was worried about them charging her because she didn't give 24 hours notice for the two appointments that were scheduled on Monday.  "That's the least of our worries", I mumbled, "Let's just get you home and we'll figure it out".

Once we were home & mom was settled I called my husband.  "I don't know what to do", I sobbed. He listened to me for nearly half an hour.  I went through every possible scenario my scattered brain could dream up. He knew how hard we had worked to coordinate those appointments.  He also knew
how sick mom was. "I think you need to still try to go", he said softly, "You know if you don't, you'll always wonder".  I couldn't believe he said it.  Hadn't he listened to all the scenarios I had just rambled through?  "What if she dies there?", I screamed in to the phone.  I didn't want to be alone with her that far from home when the time came. I was scared, really scared.  With his calm assurance that we would "get her home, one way or another", I felt a little better, but I wasn't any closer to a decision than I had been before I called him.

Mom seemed to be doing OK and was pretty lucid.  She had dinner, desert and her evening pills.  She told me what the NP had said and how she had felt like she was being "thrown out" of the hospital. She didn't want to stay there after being "treated that way" anyway.  "They've already decided I should just die", and then, "wouldn't it be great if these new doctors can help us".  She again wanted to know what day we were leaving.

My brother, both sisters and my aunt (moms sister) all agreed that we would see how the weekend went and if mom still wanted to go and was able, I'd take her.  They all assured me, as my husband had, if mom died making this trip we would get her back home somehow.


For the next couple hours I imagined what "somehow" might entail.  I do have a very active imagination, but why can't I imagine a cool drink on a nice beach?

My imagination was a great asset when I was a kid, not so much right now.

Is it possible to go from lucid to full blown dementia in an hour or two?  Maybe.  I don't know.

Maybe it's just the end.  Time to say our goodbyes and let go.

I don't like either one of those endings.  I'm still looking for the fairy tale ending, the "happily ever after" kind of ending.  There goes that imagination again!













8 comments:

Anita Levesque said...

WOW! I know how hard is to make decisions regarding your parents. I have done that as well as help make decisions for two brothers. I have been going through cancer treatments and doctor appts with my brother and someone told him he would be dead in 6 months. Since then he has gone downhill but was not like that prior to this statement. I am not sure if this person had the right to say it to him. He was not my brother's primary cancer doctor. Goodluck with your MOM.

Peggy said...

I can't imagine what you are going through. My heart aches for you as you navigate these really tough decisions. Sending love, light, and healing your way.

Peggy (from UBC)

healthcare hostages said...
This comment has been removed by the author.
healthcare hostages said...

Sounds like you have really been through it!

It saddens me that doctors can be so insensitive and callous. Sometimes I think the lack of support, compassion, and preservation of dignity decreases one's will to survive. I am sorry your brother was treated that way! My MIL was told several times in her last 7 YEARS of life that she had "6 months or less". Each time she became more depressed and withdrawn.

Thank you for commenting and the good luck wishes - I truly appreciate it.

healthcare hostages said...

Some days I can't imagine it either! It is tough, but the time I've had with my mother has taught me a lot!

Decisions are always tough, but shouldn't be complicated by the very people we look to for help! I hope, by sharing our trials and tribulations through this awful time, I can help others avoid some of our struggles.

Thank you for taking the time to read my post (I know it's not "short and sweet", it's anything but). And, thank you for your comment and kind words/thoughts. It truly is appreciated more than you will ever know!

Have a wonderful day!

Brenda

JM said...

Brenda, I've gone back and read your first 6 blogs, and all I can say is God bless you for fighting so hard for your mom -- and that I wish I'd been there.

I was raised in a quasi-medical environment - my dad used to teach biochemistry and mass spectrometry at UT Southwestern Med School in Dallas - so while I respect (most) doctors, I have never been intimidated by one. But I know that many people are, which makes them hesitant to question medical "authorities".

When you question the doctors and nurses, you are doing exactly the right thing for your mom - and for your whole family. Do not second-guess yourself or your questions and doubts; you have those doubts for a reason. Do demand answers to all of your questions. Sometimes your doubts may be needless, but that does not mean that they are not important, because it is very important to have ease of mind, for both the patient and the caregiver(s).

Put your questions in writing, and as you get the responses from the medical personnel, write those responses and answers down. Keep meticulous records. And again, bless you for what you are doing! It's a hard row to hoe, and it takes very special people to see it through. Obviously, you are one of those special people!

JM said...

Brenda, I've gone back and read your first 6 blogs, and all I can say is God bless you for fighting so hard for your mom -- and that I wish I'd been there.

I was raised in a quasi-medical environment - my dad used to teach biochemistry and mass spectrometry at UT Southwestern Med School in Dallas - so while I respect (most) doctors, I have never been intimidated by one.

When you question the doctors and nurses, you are doing exactly the right thing for your mom - and for your whole family. Do not second-guess yourself or your questions and doubts. Do demand answers to them all. Sometimes your doubts may be needless, but that does not mean that they are not important, because it is very important to have ease of mind.

healthcare hostages said...

Thank you so much for taking the time to digest our story! I also respect (most) doctors, but then, I respect (most) people and doctors are people. I am not intimidated anymore, but there was certainly a time that I would have taken what they said as gospel.

I just wish they could understand that I ask questions because I want to understand - I also want to make sure they understand! Every person is unique, not everybody is a "text book" case! And, yes, I sleep better at night if I have at least asked the question!

Very good suggestions! I try to have a prioritized list when I take mom to the doctor. If we run out of time, at least I hopefully can get the most important questions answered or at least asked!

Thank you so much for your comments, suggestions & kind words!

Have a Blessed day!

Brenda