You Can’t Go Home Again

Summary: My elderly mother was living in her beloved home with the concerted help of friends, family and home health aides.  But after knee replacement surgery, her dementia emerged– fully developed.  Our family was completely unprepared for our new reality; one of the many issues addressed by Caring Across Generation’s #blog4care as together we confront our national eldercare health crisis. Here is our story:

Her home was the culmination of her dreams.

And as my mother encountered the increasing physical challenges of her later years, she clung fiercely to her independence and her refuge.

I remember one particular attempt to discuss her emerging limitations:

Maybe we should look into a retirement community…?

Maybe I should just die.

And so, from 3000 miles away, we cobbled together a ragtag but reliable network of friends and cousins, neighbors and home health aides, church volunteers and Meals on Wheels. It took a village, but our mother would remain in the place she loved best.

And for more than a year, it seemed to work. But her knee started to hurt; then it started to buckle; then she started to fall.

Her doctor’s proposal: knee replacement surgery. But my mother was apprehensive, fearful.

Should I do this, girls?

We set out to answer that question during our annual Christmas visit, weighing her options in a brief, upbeat examination with her doctor. He countered her doubts; happily assuring us

you will be dancing out of the hospital.”

It’s alarming how charming a doctor can be.

After the surgery, my mother reported from her hospital bed that she was living in an opulent room, decorated with crystal chandeliers, gold damask drapes and a heavy red brocade bedspread. It was a castle, she giggled; her every wish was their command.

I thought it was bit unusual, but I didn’t worry; clearly she was still under the effects of the anesthesia.

But the fantastical descriptions continued. I didn’t know anesthesia could last so long. Her conversations made no sense.

She could not stay at the hospital. After multiple discussions with doctors and social workers, we moved her to a “convalescent” home. It was described as a temporary interlude; the best place to learn physical therapy for her new knee.

I called her. She burst into tears.

Oh Hallie, I am so glad it is you. Last night I slept on a park bench! Now I am trapped in a school!

…a bench…a school…?

Call the police, Hallie. I am lost!

But Mama, I called the number for nursing home. They answered. And they put you on the line. You’re where you’re supposed to be.

Hallie, please help me.  I am lost! Call the police!

But…

Hallie, HELP!

(Time out…is this still the anesthesia? OK…I can get her through this. If I keep telling her where she is– what is going on–my smart, stubborn mother will come out of this. The anesthesia will wear off. She will wake up; learn the physical therapy; go home.)

Yes, Mama. I will help you.

I called again.

Oh Hallie, you are missing a fun party. I am at Aunt Mary’s house and there are lots of people. I can’t find Mary, but there are so many people here. I am sure I will find her.

Mama, you are at the nursing home.


Hallie, don’t be silly. I am at Mary’s house. It’s a party. Lots of Mary’s friends are here.

My uncle called me a few days later. I spoke to your mother. She thinks she is at Aunt Mary’s…at a party!

(That must be some party…)

But I still didn’t get it.

I thought her mental lapses were temporary. I thought it was the anesthesia. I thought she was going home.

Do your exercises, I implored; my sister implored; our cousins implored. Our village was unanimous: Do your physical therapy and you will go home!

The nursing home notified us; Medicare will not cover her care unless her doctor prescribes more days…(Yes, I thought, she needs more days to learn her exercises; more days so she can go home!)

I called the charming doctor. I would convince him to prescribe more treatment; give her more days. I know she will get better…

I heard his hesitation, and then I heard his words.

Your mother had me fooled; she was so bright and bubbly; funny and sweet.

My mother had you fooled..?

I didn’t ask the right questions. I didn’t realize that her mind was gone.

What?

I would never have done this surgery if I had known her mind was gone.

WHAT? What are you saying to me?

I am saying your mother will never go home.

A Swift Current || Reflections on Elderly Parents || You Can't Go Home Again

California Dream– Photo by Hallie Swift

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19 thoughts on “You Can’t Go Home Again

  1. Wow. So suddenly. But yes, anesthesia is awful. My mom slowly degenerated over multiple surgeries. It happens to all of us, we just don’t have old age added in (yet). This was a powerful entry, H. Well done.

    • Thank you. I appreciate your comments, particularly as I was apprehensive that the subject might be somewhat pedantic, and yet important in transitioning to my discussion of dementia. I felt I needed to relay the story of how we discovered my Mother’s decline, thinking that there are certainly other readers who have been or will be suddenly confronted with a similar situation. Even at the time, I was astounded that no one had warned us that the anesthesia could trigger such powerful and unrelenting developments, and she had every right to be frightened about the surgery. I thought the experience would be relatively routine…and perhaps this post will help alert people that when you are in your eighties, nothing is routine.

  2. Hallie, This brings up another, related subject that is all too often not mentioned to families of elderly loved ones in the hospital. My sweet Daddy has suffered from “hospital psychosis” the last two times he has been hospitalized. The delusions are terrifying, to him and to us, and the hospital seems to be incapable of dealing with the situation (warning…the anti-psychotic or sedative drugs they use only makes the situation much worse!). He becomes combative, psychotic and very delusional. It is horrible. And, once a person suffers from it, the likelihood is that it will recur with each subsequent hospitalization. While this is somewhat different from what you are describing (thankfully, his cleared a few days/week after we got him home), it is all part of the same decline. Every time it happens, another “piece” of the person fades away. Thank you, again, for your insightful blog.

    • Joanie, I appreciate your sharing this information here. I hope this blog will serve to alert people to the unspoken complications that occur. I did not know about the hospital psychosis, but I bet it is more common than one would expect. I am fascinated by your comment “the hospital seems incapable of dealing with this situation” and that the drugs only make it worse. If anyone among our readers can shed light on this discussion, I would appreciate your input.

  3. Written so well. It is so scary–I went through this for just a week with my Mother before she passed away. Her heart was beating slow one minute like only 20 beats and then 160 beats a minute. When it was slow she would not know where she was and when it was fast she was trying to climb out of the bed and talking ugly. It would have been very emotional to have to deal with for a long period. You are helping all of us to look at the things that can happen so suddenly to our loved ones and to make plans in case it should happen to us.

    • Thank you for your comments about my writing. I am always so unsure right before I hit the “publish” button AND your reinforcement encourages me! I wonder if other people have experienced what you have described here. Like the situation Joanie wrote about in the previous comment, it seems to me we rarely talk about these unexpected, painful developments. I hope that at this blog will be a forum so people understand and anticipate the “what ifs”, which are not as unlikely as we would like to think…

  4. That is a heartbreaking story, and one that the medical establishment should be aware of. My own dad had a doctor who, just two or three weeks before he died, suggested some treatment which we kids didn’t think was a good idea. Dad wanted to live a full and active life and had asked for no tubes or last minute surgeries. The young doctor said “he will recover fully!” with a big smile. But we asked him some more questions about what “fully” meant – “well, he’ll probably be in a wheelchair and he might need an oxygen tank…” That is not “fully recovered”, and dad would have hated it…your mother’s doctor’s comment that ‘you’ll be dancing out of here’ reminded me of that. I think they get kind of caught up in fixing things because that’s what they know how to do. But it is not always what is right. Keep on writing, Hallie! and thanks.

    • Hi Dan, Your story is very moving and I think you summarize the dilemma well; doctors tend to focus on their specific specialties and interpretation of “recovery.” It is up to the family members to ask and ask and ask, which at times is not welcomed. Communication, and the lack thereof, is one of the themes that emerges as I look back at the last decade. It is the key; your Dad communicated his desires, which gave you and your siblings a clear direction; we know that doesn’t always happen. Like your Dad, my Mom was very specific and backed her desires with the legal paperwork which guided us in some tough circumstances.
      I know that the doctor’s comment “you will be dancing…” made the surgery sound like an absolute ‘no-brainer’; it did not occur to us that there were other options or any downside; in retrospect, we were staggeringly naive. This was underscored by a chance interaction with a geriatric care specialist in an airport (I used to travel non-stop for my work and had some critical calls at pay phones!). The geriatric doctor said what was happening to my Mother was very typical for elderly people after major surgery due to the anesthesia; he disparaged doctors who treat major surgery like an assembly-line and don’t warn the families about the potential ramifications. I hope through sharing our experiences, others will be alert to what can unfold, and the questions to ask. Thank you for your encouragement to keep writing…deeply appreciated.

  5. Hallie..I could feel every one of your emotions. I want to thank you for preparing me with your posts about what is surely going to come soon in my life with my Mother. When I saw the post of your home, it reminded me of the old days and I hunted around for a picture of our old family home, my Mother’s castle. Thank you so much for every word that you write. I need to read all of them. F

    • I am grateful that your think that this blog will help prepare you; that is one of my primary goals. It is touching that you hunted down a photo of your family home; and yes, I can relate to your phrase “my Mother’s castle.” For me, it is only through a rear view mirror that I realize how symbolic and significant that house was for her, and by extension for me. Thank you for your comments and for your support of my writing…it moves me that you say you “need” to read my words.

  6. I’ve heard of anesthesia removing the cover up before, too. What a fascinating thing -they adapt to ‘fake it’ for months, years?, but then the anesthesia does a ‘reboot’ or something. It must have been incredibly confusing and heartwrenching to go through that journey. You are doing a great service to those of us just tipping our toes in the water. Thank you…

    • It is interesting to me that you have heard about the impact of anesthesia; I had not known that and certainly if we had been warned we might have reconsidered my mom’s knee surgery. I say might because I don’t think I really know how we would have used that knowledge, and it is possible we would have proceeded nonetheless.

      And yes my Mom was able to “fake it”…perhaps for years…for example, if I questioned her about an “off base” comment, she might respond: I was only joking.. And when she said that, I honestly didn’t think twice. When we cleared out her house (future post!), we found evidence, like years-old rancid Christmas cookies still in the tin, that indicated that the issues had been going on for quite some time.

      I suspect you’ve read that it is even more difficult when one parent protects the failings of the spouse; one of my friends discovered her stepmother’s full-blown dementia only after her dad died of a heart attack; he had never let the family know about his wife’s decline. In our case, I suspect the “village” I had so carefully orchestrated to enable my Mom to live at home actually closed ranks and didn’t really communicate what was going on…I believe my sister and I were kept in the dark (perhaps well-meaning but I do think it contributed to the swift unfolding of events). Thank you again. I really appreciate your participation in the blog; everyone’s comments help me tell this story.

  7. I remember when that happened to a beloved senior neighbor after just a simple hospitalization! And your last comment about food hit home as well. I had been buying her groceries weekly and was happy to know she was eating well. When she went into the hospital I went over to tidy and clean, including the fridge – where I found much of what I had bought still there. So she had NOT been eating well, which probably helped lead to the hospitalization.

    My senior mom has had two surgeries in the last few years and, while we were blessed to not have such a dramatic change, we have seen changes. So we are proactively working to avoid future surgeries if at all possible for just this reason.

    Thank you for sharing this for #Blog4Care – it is such an important message to get out there.

    • Thank you so much for your comment…it sounds like the support you gave to your elderly neighbor was similar to the “village” of neighbors and friends who surrounded my mom and enabled her to stay in her home…our team of angels! As I look back, I am astounded that in our pre-surgery meeting with the doctor, we didn’t probe him with questions; we were happy and blindly trusting with his assurances! More than a decade later, the what ifs of our decisions haunt me. If I had to do it all over again, I would listen closely, ask thoughtfully, consider carefully, and seek others’ experiences before agreeing to any surgery or other life-altering choices for an elderly loved one. I am writing these essays in the hope that people with similar dilemmas can glean insights from our family’s story. Thank you again; I welcome your input! Hallie

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