Total Pageviews

Monday, November 23, 2015

Challenges and limitations

Thank you for continuing to follow our journey. Since my mother's passing, it has become more important than ever that I continue. Mom and I discussed my blog often and she always encouraged me to share the WHOLE story, but even with her unending support and encouragement, I felt somehow the sharing many things would strip some of the dignity I struggled so hard to help her preserve. I made a promise to my mother that after her journey home to The Lord I would reveal some of the more personal "stuff" about my role as a carer and hers as her need for care increased. As always, I will attempt to be delicate and tasteful, but some of you may find some of the details to be a bit graphic.

Challenges and limitations.

The first week of September, 2013, mom started her third stint in the Sub-Acute Rehab
Unit for the year.  Things started out good and mom was doing “as well as could be expected” with her Physical and Occupational therapies, given the new challenges and limitations she was facing.  Between therapies, when mom was whisked away for audiology testing, I took a break and headed for the cafeteria as I contemplated the many anticipated new challenges and limitations.

The surgeon had shortened moms’ leg by one inch to allow it to “swing through” as she was to be “toe touch” weight bearing (for balance only) until they could do yet another surgery to put her knee back together in a few months.  The hope was this would prevent the rod from pushing through moms’ mushy soft bone again until they could be certain the infection had cleared enough to chance replacing the hardware.  Although her shoulders were bone on bone, mom was able to push through the pain in her upper body by using a platform walker with nearly all of her weight resting on her forearms with each step she took.

I couldn’t help but wonder what kind of a toll this latest setback was going to take on mom.  Nearly every joint in her body, except her hips, were ravaged from RA.  Her joints were already so damaged from her 50 year history with Rheumatoid Disease and the various medications she had taken for it over the years, I wasn’t sure how much more they could stand up to (no pun intended).

More than once I wondered if we had made the wrong choice about not amputating moms’ leg.  It almost seemed like we had sacrificed the rest of moms’ ravaged joints to save the leg.  Of course, that thought made me beat myself up for a while.

I had been so focused on the fact that mom needed her leg, at least enough to balance for transfers, I hadn’t taken in to account she would also need her arms to assist in said transfers.  Now, anyone who knows me knows that I can do a much better job of beating myself up over things I either have no control of whatsoever or things that “might” or “could” happen.  Indeed, my mind quickly shifted to the unanticipated complications.

Thoughts of how bad it could get if mom lost the use of her arms were consuming me as I tried to choke down the food I had forced myself to buy in the hospital cafeteria.  I felt tears on my cheeks as my mind processed graphically vivid pictures of mom in various states of decline; visions of a less than desirable quality of life for her, way less.

As it was, mom already needed help with just about everything: she was barely able to lift her arms enough to brush her teeth; washing her face required both hands (one hand to lift the other arm at the elbow enough to reach her face); she was unable to shower or dress herself due to her limited range of motion of her shoulders and the massive amount of hardware in her back; she couldn’t even open a yogurt or cream container due to the pain and deformity of her hands from the RA.  What was going to happen if mom wasn’t ever able to use that leg AND she loses any of the mobility she has somehow been able to maintain?  How could I even plan for that?

The dark thoughts of how bad it could be for mom were replaced by much more selfish thoughts of how bad it might get for me.  What about my challenges and limitations?  I was already the personal shopper; the maid; the cook; the secretary/appointment scheduler; transportation specialist; hair stylist; etc.  How much more was I going to have to do?    How much more was I going to have to endure?  What was going to happen to my life if mom continued to decline?  When was I going to catch a break?  Why was this happening to me?  What did I do to deserve this?

Of course, with each thought, I chastised myself sufficiently enough to get a good dose of depression brewing.  Also, with each thought, my sweet mothers’ face flashed through my mind, reminding me that as bad as it was for me, it was much more so for her; reminding me she had made many sacrifices for me over the years; reminding me I already knew the answers to most of my “poor me” questions.

I didn’t do anything to deserve this; It’s all somehow part of God’s plan.  This wasn’t happening to me, it was happening to us.  I was going to have to do however much more my mothers’ declining health warranted.  I would endure however much more was required, for as long as required.  I would catch a break when mom did.  Of course, there was no way I could know (or predict) what was going to happen to my life regardless of how fast mom did, or didn’t, decline.

I just hoped and prayed that, whatever was yet to come, God would give me the strength I needed to get through the dark days ahead.

Trust me.  There are dark days ahead!


Tanya said...

Big Hugs. As always your story touches me in many ways. I use that face washing technique but if there is any real dirt I still can't create enough pressure to scrub it. It's been 7 years since I could bath myself even with adaptive equipment. While I am no where near as sick as you Mom was during your story I deeply connect to the troubles and feelings she was experiencing. Your side of the story gives me comfort. My 86 yr old Dad is my current caregiver. He is very stoic and often his lack of demonstrable emotions causes me internal conflict. To me you give him a voice. Eventually, I will face either a nursing home or my daughter (25yr old currently) being my caretaker. Your story is helping me evaluate the future of my own life and care.

Sandy KS said...

Big hugs, God is surely with you with a plan. I am sorry your mother had to go through so much for having R.A. I worry about that. As I am in 40's and suffer from R.A. among other health issues.

Jeanne Melanson said...

Aww, bless you. My mother passed away 6 months ago at 94 years. She had advanced Alzheimer's Disease. My sister was her caregiver and I know of the challenges, the angst, the depression, the guilt ... You must know that your Mom appreciated everything you did for her. Thank you for that. Peace

healthcare hostages said...

Thank you Tanya. I hope to continue to tell the story as a way to help others in what ever way possible. It is not easy being a caregiver, as I am sure it is not easy being the one receiving the care......I know mother was frustrated greatly with her limitations. I also know that her faith in The Lord carried us both through some tough times. I am working hard on getting my life back on track (normal is not in the equation!) and getting my business going again, so I don't have as much time to write as I did BUT I WILL CONTINUE as time goes on. Take care of you & give your dad a big hug!!!

healthcare hostages said...

Thank you Sandy. Mother was diagnosed when she was about 27 or 28, so although she went through a lot in the last few years, she was also able to live a good 50 years with RA; raised 4 children; welcomed numerous grand children and great grand children in to the world.......I think she had a good life in spite of the RA - she never let it quelch her spirit even as it ravaged her body. Yes, God always has a plan! Please pay attention to your self and watch for any symptoms! God Bless.

healthcare hostages said...

Thank you Jeanne. I am sorry for the loss of your mother and especially sorry she was afflicted with ALZ - my worst nightmare! I'm glad your sister was able to step in and I'm glad you recognize the residual effects of's not easy! Yes, I know mom appreciated me very much and I also appreciated her sharing her life with me to the extent she did. God Bless you all!