Dementia And (New) Old Friends
I have been struggling with what I would write about this week. I have several partially-baked ideas but none of them has been able to force my attention in their direction so that the baking can be finished. Perhaps I still suffer from that post-Thanksgiving torpor where I would rather be dozing in a recliner after eating too much.
But then I noticed that a reader of this site had pulled up something I wrote early this year. Last November my sister and I drove my mother to the place of her youth so that she could see her old homestead and visit the small cemetery where so many of her family are buried. Has it only been a year?
If you have never watched someone close to you suffer from dementia, well . . . I don’t recommend it. Although I suppose that things could always be worse. Anyhow, I looked at that piece I wrote in February and see how much has changed since then.
Mom is now living in a facility that specializes in memory care. Which is poorly named, because it is actually lack-of-memory care. It is so easy for those of us who have it to take our memory for granted. I often joke that I can’t recall what I had for lunch yesterday, but this is only because yesterday’s lunch was so not memorable. (I actually do remember, it was half of a leftover Philly cheese steak sandwich. A good Philly cheese steak is always memorable.)
But what if you couldn’t remember your most recent meal today, or whether you had even eaten one? Or if you put something away and forget that you even have it? That is my mother’s life now.
For awhile she really wanted to go home. Where is home? Not the house where she last lived and not the one where my sister and I grew up. “Home” is where she grew up. “I want to go home – I have friends there” is a conversation we have had multiple times. She doesn’t understand that she has not lived there since she went off to nursing school in the fall of 1951. And that most everyone she knew there is no longer around, having moved or passed away.
These days she knows that she doesn’t want to be where she is, but doesn’t know where else she would go. My mother was always a fighter but she has become increasingly docile as she navigates her day to day life, with ever-increasing help.
One of the greatest frustrations for my sister and for me is Mom’s thing about missing possessions. In this miserable feedback loop, any time she cannot find something, there is no other possible explanation than that it has been stolen by the staff. “This place is a den of thieves!” she will sputter, proving that she still has some of her old fighting spirit. This “constant thievery” leads her to hide things. Which means that when she goes to look for it, she cannot find it. And . . . you can see where this is going.
I should add that the staff has been really wonderful there and that not a single item has ever gone permanently missing. Sooner or later one of us will find it, squirreled away in some ingenious little hiding place.
On recent visits we have noticed that her room key has become a problem. She has generally worn it on a stretchy band on her wrist. She checks for it there. But one evening Marianne and I arrived to find Mom in a rant because her key had been “stolen”. Being familiar with the drill, Marianne and I begin the Level 1 room search. Level 1 is my term for the kind of search where you hit all of the normal, easy hiding places, and which takes maybe ten minutes. We looked in pockets, in shoes, in drawers, but no key. “What about under the mattress?” Mom asks. “Eureka!” I think to myself, she has taken to hiding things under the mattress! But no.
A trip down to the nurse to ask if there are any new hiding places (“try inside of some socks or stuffed into a box of Kleenex”) and I head back again to move our search up to Level 2. About that time she needed to scratch an itch and found the key . . . which she had hidden by stuffing into one of her undergarments. Nope, no Level 2 search conducted by me would have turned that one up. Ever. “Good grief, Mom, put that key back around your wrist so you can find it.” “No, they will come in and steal it from me at night.” I avoid the temptation to ask why anyone on the staff would want her key since they all have one of their own. I asked that once and was met with “Probably so they can sell it.” So back inside it goes. Whaddayagonnado, other than clue the staff in on the latest hiding spot.
But dementia brings the occasional good thing too. She has reconnected with a lifelong friend. At least in her mind. Edna (not her real name) is definitely real, and she and my mother spend hours visiting together. They are about the same age and come from similar backgrounds. They have known each other for perhaps five or six months. But each of them is convinced that they have been friends for many decades.
When we visit, we are always sure to peek into Edna’s room on the way to Mom’s. At least half of the time, there they are, just chatting away. “Edna, have you met my son?” Mom asked recently? “Oh yes, but I don’t think I have seen him since he was wee little” Edna replied with a big smile. Unsure how to respond, I smile and say “Oh, I think we’ve seen each other once or twice since then.” Because it is true but vague enough that she can take it any way she wants – as a reminder, as a joke or as me being the one who doesn’t remember. She nods and says “I guess you’re right.”
Dementia has taken so much. It is good that it can give back a small gift once in awhile.
J. P.'s Blog 
Jim, your knack for tapping into what others have going at the very same time in amazing.
My mother is dealing with a double case of this right now, but it is much less intense than what you and your sister are managing with your mother. It’s agony through-and-through; it’s great to see that you are able to realize the rare but bright little rays of sunshine that poke their heads into the forest.
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Thanks Jason. Your mother has her hands full if she’s dealing with two sufferers at once.
It has been quite an adjustment period for her. The early weeks where she had all of her things packed up every evening because she knew we were picking her up were almost more than we could take. The staff had to keep reminding us that this was harder for us than for her.
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Yup. Luckily not there myself (either the dementia or the care) yet. Some close friends of ours built an apartment onto their house to care for a father who was beginning dementia, having promised the mother on her deathbed that they would care for dad. Bad idea, as he got worse it disrupted the rest of the family and they finally got him into a facility when it was obvious they couldn’t handle him anymore. He’s gone now, he was like an empty bottle the last year or so.. 😦
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That was a huge struggle for us. We might have been able to bring her to live with us but that would have made my Mrs. the day to day caregiver when I am at work all day. That was not a role I wanted to force on her, and I don’t think we could provide the supervision Mom needs.
As much as I wish ger place was less that the present hour drive away, she is in a smaller city which translates to a more homey atmosphere for her. I can’t say enough for the staff there.
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We just helped my wife’s parents move into assisted living. This is one of the other big things going on in my life right now. Margaret’s mother’s memory has faded to the point of remembering today but not much that happened in the days leading up to today. It’s been enormously challenging. So: I feel you.
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Assisted living was our first step, and it worked well for awhile. But after about a year and a half, it became apparent that Mom had lost the ability to keep herself occupied. A fall and hospitalization forced the move to memory care. That may have been the most miserable time of my life.
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I can well imagine that was terribly hard.
If Margaret’s dad weren’t still around, we would have had to put Margaret’s mom directly into memory care.
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Jim, you struck a nerve here. I have seen the two previous generations of both sides of my family go through this. With my mom, it was “I don’t have any clean pajamas.” Like you, I learned not to argue, just say “we will take care of it.” The hiding places were ingenious and mind-boggling.
The parents are long gone now, and I am currently caring for Mrs. Tom in Phoenix the stroke victim. Fortunately she is quite sharp mentally.
I am enjoying your blog; I found it through Curbside Classic. I wish you the best in your journey with your mom.
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Thanks Tom, glad to see you here. Yes, aren’t those hiding places amazing? Hope things go well with your Mrs. also. I understand stroke recovery is no fun.
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Those small gifts are so important in this situation. Great post!
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Thanks! Lately I have been trying to get away from the idea of whether I will have a good visit with her and replacing it with the idea that I will try to bring a good visit to her. Not always easy.
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I’ve been there in a slightly different version. It’s a journey. Just do the best you can, like you’re doing. Intentions are everything!
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My own experiences with my mother and memory care are far more than I care to get into here. Unfortunately for me, I was five hours away, so I wasn’t able to be there for a lot of it. I harbored a lot of guilt about it for a long time. Fortunately for me, my brother and his family was nearby and they did God’s work taking care of my mother. He and I may not have always gotten along the best, but I do give him all the credit for guiding our whole family through the entire process.
I guess the only regret that I have throughout the whole experience is that I didn’t take even more time to see her. Do that as much as you can, you won’t regret it.
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Thanks George. I am over an hour away but my sister is local. We have been pretty good at sharing the load.
I struggle between hoping that it all ends for her soon and with wanting to keep her with us as long as we can. It’s a tough thing to straddle.
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Agreed, brother. May God grant you your guide and peace in this journey.
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A good friend of mine came down with this dreaded disease in his late 50’s, within a few months he no longer recognized his own family, or even acknowledged that he had family. I lost track of him a year or so later as his family moved him from nursing home to nursing home. I fear he may no longer be with us. Very sad, very tragic.
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An uncle got diagnosed with Alzheimer’s at that age and it advanced all too quickly. My Mom’s situation Is a little different, but I am not sure it makes any difference in the end. Thanks for your thoughts.
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I’m glad your Mom has made a good friend at the facility … that’s really important. My mom went through a fortunately brief decline in first memory and cognitive ability, then physical health about six years ago. At the beginning, when I was starting to realize that she didn’t always remember who I was, I was taking her out in my car and she pointed at a car we pulled up behind at a stoplight. “That’s a Chrysler” she pronounced, and sure enough it was a Sebring. “I recognize that logo. You know, they sponsor my favorite radio show, Major Bowes Amateur Hour”. I looked it up later and the show stopped being aired in 1952. At the next stop light we pulled up behind a Hyundai. “Do you recognize that car, Mama?” I asked. There was a lengthy pause. “It’s Korean” she said finally. It was around that time when I drove with her past my high school, and pointed it out to her. “That’s funny” she said. “My son went there also”. That was a very difficult moment.
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Yes, there are many difficult moments. I fear that we are heading for that place where she will have trouble recognizing people, but we’re not there yet.
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