Bittersweet memories of aging

“Every word I say, all day, is a lie”

Those were the words spoken by my 87 year old grandmother this week in one of my visits chatting with her during 10-days at their home in Budapest. I visited them as much as possible during my time there, but with my grandfather now 90 and deep into Alzheimer’s, visits were more brief than in the past, and could not occur every day. I was struck by the degradation of my grandfather, and how quickly he had completely changed from a fun loving, full of life, charming, warm, caring man to a hollow shell of a man paranoid about the world around him.

He now lives completely in a world inside his own mind. The reality of his surroundings is irrelevant, because his brain has taken him out of our world and into his own. When my grandmother uttered that line above, it was after an hour stretch when my grandfather paced up and down their condo, searching for things we couldn’t fully understand. At one point he said he had discovered oil in the backyard. Then minutes later he was asking where everyone went. Upon talking with him, we discovered that he thought he was working at a factory and everyone had gone home. The reason she now tells lies all day is because she has realized it is futile to try and talk him out of whatever scenario he is in. Approximately 2 years ago when he started behaving this way, she would say, no, sweetheart, we’re at home, there’s no one else here, we’re fine. Now, she tells him the workday is over so he can relax.

All of this wouldn’t be so bad if the looks on his face didn’t reveal varying levels of fear. Two of his common worries are that he is going to be executed at a specific time that day and that they are going to be evicted from their condo (which they own). This is a man who fled the 2nd World War, so in his childhood must have had some familiarity with executions- but certainly not in at least 60 years. Over those 60 years he has lived comfortably, started a family, built his own home, escaped the war and moved his family to Montreal where they successfully lived for 40 years. Executions and evictions have not been an issue for decades. Yet there he sits, stoic and unable to be persuaded otherwise. He is going to die at 4pm today.

Possibly my favorite coping mechanism my grandmother has figured out is when the execution story starts, rather than tell him there is no pending death, she now tells him “yes, but you know the government workers can’t be trusted, they won’t show up anyway, so don’t worry”. And you know what? It works. It eases his mind and he believes her. She has become quite adept at working within his unique situation to make him feel better.

But I was struck by the depth to which he lived in his own world. It wasn’t just that he had a paranoia about being executed at some point in the future by vague enemies- he would be hung at 4pm that day and they were coming to get him. I realized it was similar to dreams I would have- for example that I was back in college and had to take a test to graduate which I hadn’t studied for. I’m always incredibly worried and unprepared and it feels incredibly real. Luckily I wake up and realize it was a dream and move on. For him, that’s his world, every day. And I could see from the look on his face that he truly believed it. There is no waking up for him.

On other days, when we would travel out of the house, my grandfather took to reading things out loud. At one point he read the “Pismo Beach” name on my t-shirt, and later began reading off street signs as we drove past them. It was almost like a kid proudly showing he could read. I’m not quite sure if he was just trying to exercise his brain, or prove he could still do it, but it was funny to hear him read them off from the back seat as we drove down the road.

As the week went on and the severity of the situation sunk in, I began to feel sorry for my grandmother. I was sad that my grandfather, who I grew up adoring and who would do absolutely anything for me and my family, was gone. I would no longer be able to talk with him about my job, what sports I was playing, how my friends were doing, or any of the other great conversations we used to have. And that is awful. But for my grandmother, the man she married 65 years ago is literally wasting away in front of her eyes. She has to live with him every day, and see him go through a variety of moods, none of which reveal any of the family patriarch we all adored.

Whoever termed Alzheimer’s “The Long Goodbye” put it perfectly. Here you sit in front of the person who looks like the individual you remember, but they are not in fact there. Physically they may be, but mentally they aren’t. It has led to many a conversation in our family now about whether it is better to die quickly vs fade away in this sort of half conscious state. My mother insists that she never wants to suffer in her old age, she wants to go quickly. Which is fine, but how much is he suffering? He eats full meals, has lucid moments every now and then. The first time I saw him this week we had about an hour where he was excited, engaged in conversation and happy to look at pictures I had brought from my recent trips. My grandmother said he hadn’t been that engaged in anything in a long time. I took that as one of the greatest compliments of my life and was incredibly happy to hear that. Sadly, it didn’t last long, but at least we had that.

In one of the deeper conversations of the week, my grandmother looked at me and told me her greatest worry was that she dies first. What would happen then, she asked, when no one else could provide the level of round the clock care and compassion that she gives right now. She talked about how she has denied all requests for others to care for him, and steadfastly refuses moving him into any type of assisted living home. Finally she has allowed someone to come in twice a week just to talk with him and allow her to have some time to herself, but that took a long time to be allowed.

The dedication she has for my grandfather is something I can only hope to find in a partner. The unwavering commitment and lack of doubt with which she said she would never let anything happen to him is genuinely amazing. At 87 years of age she won’t let go. She is the one who knows him best and can provide that best care and that is that. But what if she dies first, she asked? Then what? Of course there is no answer to be given, so I asked her what she would like to have happen, and she shared that her other greatest fear is living another 10 years. “What the heck would I do over 10 years? We have nothing to do now. I can’t imagine staying around for 10 more years, I’d go crazy”. OK, so then how would you like it to happen? “One of us dies one day, the other the next.” Oh, I said. “But I’ve prayed to the good Lord and he apparently doesn’t agree or he would have given me a sign.” Why? I asked. You’re both still alive, your plan can still happen, I quickly pointed out. It made sense in my head, I don’t know if it connected in hers.

I’ve noticed in the months leading up to my visit that it was harder for me to talk to my grandparents on the phone. We used to have great conversations about what was going on in our lives- where they had gone, what they had done, who they had visited, and the same on my end. Since my grandfather has faded recently, it’s a one sided conversation with him. If he’s in a good mood, he’ll ramble on about some nonsensical thing or another, and I’ll happily listen to him talk as long as he wants. I’ll tell him a little about what’s going on with me, but he doesn’t understand the context so it doesn’t go very far. My grandmother has essentially stopped having things to say because they don’t do anything. All of their food is delivered now, they stopped eating at restaurants, they really just stay at home. So, sadly, I have shied away from calling because I didn’t know what we would talk about. I realized the past week that it’s not about what we talk about, it’s about giving my grandmother a 20 minute escape from her confined space. A chance to hear something different, talk to someone on the outside. And I now feel incredibly selfish for not calling as much recently. Luckily, that is easily fixed going forward.

On the positive side, my grandmother’s mind is still holding on strong. There are some cobwebs with memory, but overall, nothing too major. Her sense of humor is as sharp as it used to be, and the few sarcastic moments we shared illustrated that she still had it. In fact at one point, as we were looking at pictures on a digital frame in their condo, she remembered the name of an old restaurant we used to go to where I was stumped. Thank goodness she still has that.

In another great moment, we were talking about the food that had been delivered for them (they get prepared meals delivered to them 2-3 times per week) and my grandmother noticed that a big dish of creamed spinach was among the delivery today. She was talking about how she would give it to my grandfather and exclaimed jokingly, “Spinach! Who needs spinach?!” and I said, “well, what’s wrong with spinach?” to which she replied “It’s awful”. We laughed and she talked about how she would just give it to my grandfather in tomorrow’s meal. It was a great role reversal moment. As I child I always remember being told to eat my vegetables, and now here I am trying to tell my grandmother to eat hers.

Further illustrating her sharp memory, my grandmother shared some stories from her life- how my grandfather’s mother came out to live with them in Montreal, then moved over to my grandfather’s sister’s place in the US when my grandmother’s mom came to live with them. She chronicled her parents and grandparents (the Fuchs side of the family), along with my grandfather’s parents and grandparents, detailed how each (with the exception of her father) lived to relatively old age. Secretly it made me feel better about my prospects down the road! It was amazing to hear the stories straight from her, and that is something I need to do more of. Instead of her sharing stories about what they did recently, our phone calls can evolve into what they did 30, 50, 70 years ago.

I’ve said to friends many times that my worst day is nothing compared to what my grandparents went through. They were married in the basement of their church because a bombing run was taking place at the time they were scheduled to be wed. They fled Hungary and stayed in Austria for a few years, then Paris before settling in Montreal. I asked my grandmother if there was ever any thought to staying in Paris, and she said there was, but never for too long because they didn’t think the long term prospects were as good there. I can’t even imagine some of the things they went through. It gives my life a completely different perspective and I often think about them when I start to feel sorry for myself. My problems don’t compare. I will never have to leave the house in the morning, knowing I have to earn money somehow that day to feed my family. I will never arrive in a new city with 3 kids without knowing anyone and very little money after leaving my homeland because of a major war. (Well, let’s hope that never happens.)

If parents strive to make life better for their kids than they had it, then there’s some sort of multiplier that kicks in going from my grandparents to my generation. We have it infinitely better than they had it, and that is something I don’t take for granted. My grandparents escaped the war so they could have a better life, and by extension, so could we. They succeeded and I am grateful to be a beneficiary of it.

I treasure the time I had with my grandparents when they were at their best. There was truly no one better. Sadly those days are gone, but I will still treasure my time with them now, just in a different way. I want to eek out as many moments with them as I can. My grandmother told me she was very worried about the coming winter. That since they couldn’t even walk outside in the garden of their condo complex she was even more worried about them just being cooped up in the condo. I felt so helpless, I told her I would call more, and that hopefully the winter passes quickly. It’s scary to think about goodbyes as potentially the last goodbye. But it’s something I’m unable to avoid thinking about the more I see them.