Where the Sidewalk Ends

This post may contain affiliate links.

In my last post, I talked about my mom’s loss of mobility.

December 29th, 2022 – Post #62

I’m pretty sure it was just yesterday that I was thinking of the cover of the Shel Silverstein book “Where the Sidewalk Ends” and feeling like that’s a pretty good picture of how life feels right now. 

Ironically, I took a walk today, trying to multitask on my phone as I went along (like I know I shouldn’t) and this drop off is what I came upon.  I had to laugh – good thing I was looking up from time to time and didn’t go over the edge.   

I don’t know what to write; but feel like I have to write something to prevent some misunderstandings.  As my mom’s condition has intensified, so has everyone’s care and concern.  While I appreciate this display of love, I feel a mounting sense of guilt that calls, texts, cards, etc… have come in, and I haven’t been able to respond to everybody.  

My mom’s confusion has increased dramatically, and so has her fatigue.  She still desires to talk with people; but that has become more difficult as she struggles to think clearly. 

It’s hard to know how much to make her phone accessible to her.  She needs more rest than ever, so a lot of times I turn the ringer off.  Besides that, at this point, she needs help even with the basics of operating her phone and gets flustered when she can’t make it work, can’t remember things in a conversation, or looks back at texts and realizes she said something that didn’t make sense, etc…  

Memory loss is a hard thing to navigate.  

There’s a desire to explain the situation to everyone, so they will take everything with a grain of salt and be gracious with what she says; but then there’s that feeling that I’m betraying her by telling people details.  

We have had some of our funniest moments when she laughs at the things she’s said and not meant; but it’s also caused some things to intensify with people who care about her and aren’t completely aware of the current situation.  

To give some examples, if I am transferring her from sitting on her walker onto the bed and say, “Now turn toward the back of the house,” she asks me which direction that is and can’t remember, even if she has a view of the back windows.  Lately, she thinks she’s upstairs, when she is on the first floor. 

She and I have laughed over this some, when she talks about needing to get down the stairs and then realizes she wouldn’t be able to do that vey easily.  I’ve offered her two possibly modes of transportation.

When we were kids, we had a bulletin board she’d covered with slick wallpaper, and used to take turns riding it down the stairs like a speedy toboggan.  I told her she could take that.

The alternative would be to ride a mattress – the mirror at the bottom of the stairs was conveniently installed once upon a time, when she tried to move a mattress upstairs by herself, and it decided to make a rapid descent back down.  Her plaster of Paris job wasn’t quite sufficient to conceal the hole in the wall, thus the purchase of the mirror. 

She didn’t think that mode would work for her either.  Good thing she isn’t really upstairs.    

She gets kind of humored by her confusion; but I can see why it would be upsetting for someone on the other end of the line to hear my mom say things like, “I’m walking; but they’ve forbidden me from getting out of bed.” 

It’s hard to know how to intervene gently in that situation and clarify that she hasn’t actually gotten into a standing position on her own in about two weeks, because she absolutely can’t.  Even with the help of two people, she has a hard time remaining upright, because of a loss in her sense of balance (she thinks she’s falling forward when she’s actually leaning way back).  As for walking, she can barely pivot a few shuffles from one position to another; but she doesn’t remember that until she’s reminded.

It’s like the yard work.  She says things like, “In my mind, I’ve raked all those leaves a dozen times; but they’re still there.”

I meant to post a picture last week in response to the suggestion that she wear a gait belt.  We do make her wear one; but she hates it.  She and I were laughing that she definitely lives in a “gaited community”. 

It’s strange to look back at the picture I took of her walking with one on and realize that was only last week.  She has really lost a lot of strength since then.  

We’ve had some major ups and downs with her confusion and blood pressure.  We knew that was a risk with allowing her to get two steroid shots; but felt it was worth it to reduce her pain.  The medication she takes for neuropathy also increases confusion; but getting her to take the full prescribed dose, instead of just half, seems to have helped with “the fireworks in her feet”. 

Since getting her steroid shot in August, her blood pressure has gone up, and she has felt a great deal of distress over wanting the dose increased on that particular medicine.  There are some very valid reasons why the Hospice doctor refused to raise the prescription; but she is having a hard time accepting that he has her best interests at heart.  We went to her primary care physician to get a second opinion, just in case, and he agreed with the Hospice doctor’s reasons. 

Last night she was worrying that she shouldn’t be on Hospice and ought to go back for more treatments.  We talked through it, and she decided she was on the right track with continuing on Hospice; but remained agitated.  She got more and more agitated, and then got a very intense headache.  I took her blood pressure, and it was the highest I’ve seen (180/105).  The Hospice doctor didn’t want to let it get that high, and her speech became garbled (she was speaking in sentences; but half the words wouldn’t make sense).  I asked her to try to smile and then to raise her arms, and she could (an inability to do so indicates a stroke); but I didn’t want to take any chances, so I gave her an extra dose of blood pressure medicine. 

The headache dissipated in about a half hour and she was able to fall back asleep.  Her readings have been a lot better today; but we are watching them closely, and Hospice has been having us report her numbers to them regularly.    

She has a hard time remembering why she opted to stop chemo and radiation, and not go through with surgery.  Any suggestion that she go back for more treatments or further diagnosis causes her to get upset and wonder if she is doing the right thing.  When we walk her through why she chose Hospice, she is resolved to not go back for more treatments; but I think the questioning still has a strong effect on her blood pressure, as does any kind of stress, upsetting news, or intense conversation.

We have been trying to insulate her from things that cause her to worry or get upset. 

If you do speak with her, the most helpful thing right now is to help her focus on things that aren’t distressing.  

She has been able to sit up on the couch some today, which is a big improvement.  Our main goal right now is to keep her calm and comfortable. 

I will try to post updates a little more often; but finding time has been getting harder – plus sleep deprivation does quite a number on my mental faculties when it comes to forming sentences…  

One thing I want to make sure I communicate is something my mom said the other night. 

Her words were, “I’ve never felt more loved in all my life.” 

I know there are plenty of questions people have about why she got pancreatic cancer; but I think it’s important we put it all in perspective.  Yes, this has been hard, and yes, she has suffered, and those who love her (including you) have suffered watching her; but it is a true gift, that in the midst of all of it, she has felt loved like never before.  

How many people live relatively silk-lined lives; but have the deepest kind of pain, not knowing if we are loved?

In the mornings, I have been listening to one of my favorite speakers, Elisabeth Elliot, to help give me some grit to get through each day.  She always started her radio programs out with the words from scripture, “You are loved with an everlasting love,” and “underneath are the everlasting arms.”  

Even if this feels like the spot “Where the Sidewalk Ends”, it is a comfort to know God’s everlasting arms are lovingly awaiting beneath every drop off.  He has my mom, and He has each of us in His loving care. 

That includes you, too.    

Oh, and by the way, you’ll probably be relieved to know that my mom says she hasn’t seen many gunshots lately…