Caring for a parent, Dementia, Health care

When the Routines Go, What is Left?

During the latest crisis of the stomach, Mama suddenly decided to stop taking the daily low-dose aspirin she has been taking since my father—who died 20 years ago—was diagnosed with heart disease. Her cardiologist told her last month, she really doesn’t need to take it, that she does not have heart disease and isn’t going to at this point. Six months ago he told her she could discontinue her high blood pressure medication. If anything, her BP is too low. She continued to self-medicate at half a tablet every other day (a dose too small to matter if she did have high BP), and insisted on continuing the aspirin. You can’t argue with dementia. I just go along for the most part. Change is hard, especially when it involves routine.

Then last week she abruptly said she wasn’t taking the aspirin anymore. Her reasoning: after 30 some years of taking it and decades of stomach distress, maybe that’s what upset her stomach (not the Gatorade, as I had suggested). Then we visited her primary care doctor and her BP was extremely low, even for her. The doctor affirmed the cardiologist: she really didn’t need to be taking a medication for high BP. And so, finally, she quit that, too.

Her ENT, though not his field, told her there really was no point in vitamins, either, if she has a good diet. Which she certainly does, thank you very much. Not happening, she informed me; “I haven’t eaten well this week.”

And so, at 99, she takes no medications other than the endless Gas-X (which is probably worthless) and vitamins. At breakfast she has a Vitamin D and at dinner a Vitamin B-12, which she insists she needs to continue to take at separate meals, and in that order; so I must continue to put them in the AM/PM pill box, not in the tiny cup a dear and long-gone friend gave her that she wishes she had a use for. She’s gotten used to the box. It’s  routine.

It’s routine. As Rebecca points out, what would she do after dinner, if not sit in the highly uncomfortable chair next to the kitchen counter and crush her horse-sized Centrum Silver with the mortar and broken pestle, mix it with applesauce, and chase it with a single bite of something sweet along with the last bite or two of her fruit saved from dinner? As she has done for decades.

While she prepares her multi-vitamin, I do the dinner dishes. Up until several months ago, she insisted on doing them. “It’s something I can do,” she said. So I just “organized” them, which took me longer than it would to just put them in the dishwasher. Then she started saying she would do what she could and her morning caregiver could finish them. Then she stopped saying anything at all and I just quietly did them.

Last week, from her perch on the other side of the kitchen, she said, “I don’t think I can do the dishes and kitchen clean-up; I just can’t see what’s there. I’m sorry.” I don’t think she meant just that night, and much as I have wished she could let go of what she can no longer do, it made me sad. I wish it was a relief to her to stop pretending she could do it—if she didn’t say it out loud, it wasn’t true—but I fear all she felt was defeat.

All her life Mama has filled time with what needed to be done. During my childhood, she was always in the kitchen. From there she took care of her family. “I don’t have time to read the paper,” she would say. After my father died, when she became unable to do his outdoor tasks, she returned to the kitchen, endlessly making soup and applesauce. And now she mostly just micromanages the people she hires to help her. It’s the only way she knows to remain in control; she cannot let go and allow herself to be taken care of.

She has, somewhat at least, stopped trying to include me in that control. I don’t take gracefully being told the “right” way to do something I’ve also been doing for years. Rebecca pointed out to her that helping her be independent means we have to give up some of our own independence. “Is that what you want?” she asked her. It’s true. And that’s a rub of this gig I have not made peace with.

I think I will soon have to start fixing her breakfast. The question is: do I just do it, or wait until she truly can’t? Because she won’t ask me to, she won’t admit she can’t do it anymore, even if trying brings her to tears of frustration and disappointment. Monday morning she couldn’t find her partial peach in the refrigerator (that frightening depository of partially eaten this and that), and she called me to find it. It was in her fruit basket, on top, in the front. This morning the water for her hot cereal cooled while she heated her milk. While she mixed up the cereal, the milk got too cool. While she heated more milk, the cereal got colder. When she got it to the table and realized she had “failed,” she collapsed in frustration; but she refused my multiple offers to make it right. She would do it herself.

Preparing her breakfast is one of her last positive and independent routines. They are being overtaken by the unwelcome routine of the constant bathroom visits and all that entails, which reminds her she is not in control.

She dreamed she was on the ocean in a boat and there was a wild storm all around her and she was trying to get three small children to a safer place.

I am fascinated by her dreams. This one shouts at the top of its lungs what is going on with her: no one to protect, out of control, becoming the cared for, desperately trying to hang on to familiar routines that keep her safe. It’s hell getting old.





14 thoughts on “When the Routines Go, What is Left?”

  1. Did I say that you were making this journey to the final depot more human for us all? Straight to the heart, my friend, straight to the heart.


  2. Dear Gretchen – I so admire your ability and willingness to share this journey you are having with your mother – your humor, your insightfulness and your hope that your presence and involvement is making a difference in the quality of your mom’s life. I thought an especially important aspect of this post was your acknowledgement of her need to cling to control over some small part of her life. How ironic that you are both in a situation that is so unpredictable and uncontrollable, and yet you are both trying to find some comfort in the things that you can control. You are making a difference and you are helping others who are struggling with their own journeys to care for aging parents and partners. Thank you for your openness, honesty and vulnerability. Hang in there and keep turning to your beautiful grandson for hope and possibilities.


      1. It’s a hard place to be, being the caregiver and the role reversal. Watching a family member suffer, they know time is now limited, where we can still make plans for our future. You are doing a truly selfless thing. The stress can be overwhelming, the experience is one that will forever change you as a person, that is the reward. It leaves you a better person with a whole new outlook on life. Make sure to take time for yourself.


      2. I am pretty good at taking care of myself! As much as possible, any way. And I’m lucky to have the space to do so. This is not my forever, a friend reminds me. And yes, it is my mom’s forever.


  3. You capture the situation so well. You and Rebecca have wonderful empathy for your mom’s situation. It is, so, so, hard getting old. You are all relinquishing and accepting, a little more each day. I found that became one of the greatest ways that I grew personally, in caring for our mom. You are so generous to your mom, you are always looking out for her best interest. As sad as she is to lose her abilities one by one, she knows she is safe with you.


    1. Ah, Sally. I wish it were true that I am generous. I am so not. I’m snippy, resentful, weary, afraid. I hope she is better off with me than without me, but that is a heck of a low standard.


      1. Ouch! As Mother becomes unable to do certain things, I find myself in complete denial and end up telling her (far too forcefully) that she CAN still do it. Mealtimes are really getting me down this week…


      2. I hear you on the mealtimes, Sue Ellen. What to have, how to cook it, watching her eat it. Tonight she thought the avocado (that was mixed WITH the mango IN her fruit dish) was potato. I want to say, “and you are the one who says such and such doesn’t taste as good as it did last time?” Seriously? In a more compassionate moment, Sally, rather than inwardly rail that she isn’t trying, I realize she has lost the ability to read cues: like it was with the mango, and we have mango and avocado salad three times a week.


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