Not quite the plan

on finding my groove as a 30 something single girl and caregiver for mom with dementia


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Not in the revised plan.

Am I on Life Plan C at this point, or D or perhaps P?  I am not sure how many times I have revised my hopes and expectations in caring for Mom.

But the other night was a hard conversation.  Sis and I agreed that it is time to put Mom in a home.  The only good reason to keep her out at this point is to wait longer until facing what will be a huge monthly bill from now until the end of her life.  But given how quickly she has gone downhill, that may not end up mattering.  We can pay for a facility for the foreseeable future.

But, Mom increasingly is overwhelmed by life at home, a household full of things to be moved around and hidden away. I worry about her getting into things she should leave alone. And we simply cannot watch her all the time. She gets up in the night or early morning and wanders the house.

And, it is time to start carving out a bit more of a life for me. I have thrilling fantasies of going to the gym after work, being able to leave for work without worrying if the caregiver is here yet, and perhaps having a friend over for dinner without interruption. Wild, right?

Suddenly it has been two and a half years in which my life has been dominated by caregiving. Where did that time go? I am mystified by all I used to do and how little seems to fit into my life now after the meds are dosed, we spend a little time together and Mom is fed and put to bed.

So it is time for a new plan, where she gets a higher level of care and I reclaim a corner of my own life. Plan Q, here we come!

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“I drive a car.”

During a recent discussion with the home caregiving service, Mom happily stated to the nurse that she has a car and drives. They were of course surprised to hear this– as was I.

Mom drove longer with her dementia than I think was advisable. Without realizing how quickly she was deteriorating, I moved her into a location that was extremely car dependent but not too far from me. She quickly showed signs of slower reactions and increasingly poor judgement. It was no longer safe.

I had to take action. And yet Mom was always so proud. How was I going to handle taking away that critical piece of inddependence? Luckily, Mom’s memory loss provided an easy solution. The second or third time Mom left her lights on overnight and her battery died, I did nothing to fix it.

Her car sat there, inoperable. And Mom accepted that. We would talk in generality about getting it fixed. And Mom just grew accustomed to not driving. Then finally, one day, she moved with me to the city and her car just went away…

And so, in Mom’s mind, apparently, she is a still a driver. She just happens to live with a daughter who really likes to drive in a place where we don’t need to do that much of it.

(And has absolutely no contact with any car keys. Ever.)


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The lines that we cross.

The first time that I went to a support group, one of the veterans of this dementia caregiving experience who was present asked me if Mom had started wandering out of the house yet.  He encouraged me to start looking into adult day programs, a suggestion that  probably elicits in Mom an equal level of horror as moving into any type of senior community.  She thinks of herself, she reports even today, as quite independent.  

Well, yesterday one independent woman I call Mom strolled right out the front door in inappropriate winter clothing, leaving the door unlocked.  

I have absolutely no idea how long she was out of the house or what really transpired while she was out.  By some miracle, she had a fully charged cell phone with her and she picked it up when I called.  Since she rarely answers the phone, or even carries it, I am grateful for this.  I found Mom perhaps 6 blocks from our place early enough in the evening that her fingers had not yet fallen off from frost bite.  I got her home and settled in with hot coffee, dinner and pajamas.  She reported that she had talked to a lot of nice people.

For me, the whole experience was one of those dividing lines that happen in life.  Before yesterday, I still had the illusion of Mom being relatively safe.  Today, I know that she is not.  We agreed that she will wear a bracelet with my phone number as an immediate step but of course, it is not enough.  

Somehow I did appreciate the fact that she reported that at some point in her wandering she  managed to make it to a bookstore that is a preferred walk of ours– the store is about a mile from our place and we often go there in the evenings.  Mom points out to me that she found the bookstore just fine.  I point out that she did not find our house again afterward.  Her response to that was that a description that she was close, but just a little bit off.  By the description, I suppose we can say that she was just a little bit unsafe.  Oh, the reassurance.