It’s good that it happens gradually. Like pregnancy, kind of. You get some time to get used to things becoming different, time to get adjusted to your changing and new reality. Now it’s for sure. You’re not exaggerating, you’re not guessing, you’re not making this worse than it is. Now you can truly see that your mom or dad is not the person they once were. Yes, you recognize them somewhere ‘in there’; you can still recognize those certain little familiar things – a mannerism, a tone of voice or signature gesture – and you know that yes, that is definitely still my dad. And yet….
Today my mother was working as an election judge all day at the polls, so she needed me to check in on dad. Today also happened to be my busiest day at school, so I had to pull the emergency card to run home during recess duty. Apparently the night before he’d fallen to the floor next to the bed, and since mom couldn’t get him up again, she’d just given him a pillow and covered him with a blanket for the time being. Somehow she was able to get him back into bed before I got there this morning, but I myself was hard-pressed to even get him in an upright, sitting position on the side of the bed. This was a new stage of the game. I don’t remember it being like this. I’d thought it might take some cajoling, some sweet talk and encouragement to get him up and moving, but this time those tactics were just not enough.
When I arrived, dad began to speak to me quite normally, and even with some degree of refreshed enthusiasm at seeing me. But within a mere few words I realized that we’d gone into a new territory, one which we’d visited briefly before, but from which he eventually returned. Having spent a half hour with him on this visit, I could tell that there wasn’t a whole lot of hope for him returning to his sentient self of just one week ago. I was still holding out hope that Elihu could bring him out of it, but for the mean time it was all on me. So I listened to him talk. I tried to get a sense of what he was describing, the scenes he was trying to convey to me, and who was there with him. I tried to learn the general feeling of his remembered encounters – knowing full well they were from his dreams (he sleeps nearly twenty hours a day) – but also knowing that in his dreams lay the keys to understanding what still resonated as important – and even urgent – in my father’s mind.
He told me that he had been attending a party at someone’s house – as he awoke from his sleep he patted the bed sheets and told me ‘this’ belonged to harpsichordist Louis Bagger and dad said he only hoped he could take good enough care of it… I wondered if by his linens he meant a harpsichord… perhaps a loaner from his old friend? A waste of time to try and make literal sense of it… just follow… He went on to describe this party… it was in the home of some arts patrons – Jewish people, he added – and everyone is very keen on being seen, on having being invited… it’s a very tony affair, yet the food has all been brought by guests. He tried several times to recall the names of people who were present for the party, yet he stumbled, pointed his finger into the air as if to prod the memory loose, but gave up. I re-directed dad to fill in more details for me about the gathering. What did the place look like? It was someone’s home. A fine one, a very large place too, and packed to the gills. Where there musicians present? Yes, as celebrated guests. Are you one of them? No, but I’ve been invited. Do you feel uncomfortable there? No, but I don’t usually know these people well. And so went our conversation, as I tried to glean insight into my dad, his fears, his joys, and the things that, after fifty years’ absence from his single life as a professional musician in New York City, still loomed large somewhere deep in his psyche.
Things morphed again when he began to descend into a more surreal landscape; dad’s own father (whom we as grandchildren had called Papaw) was there, and I found it interesting that he referred to my grandfather as ‘Papaw’ and not ‘father’ as he would have addressed him back then. Dad told me he was concerned that Papaw was not entirely happy with the party. Papaw was expressing some dissatisfaction, perhaps even slight contempt for the goings-on. (That sounded in- character for him; my grandfather was a successful, self-made man, one from a family of thirteen children… he was a sitting judge and a man of some means; a slightly egocentric sort of fellow who looked down on folks who didn’t demonstrate self-respect or carry themselves with dignity. He had made it known that he didn’t entirely approve of dad’s choice of careers.) Then dad took on a new facial expression, and looked up at me. “Is Nana anywhere about?” he asked me, slightly concerned. Again, interesting to me. Because while ‘Nana’ registers as my grandmother, my dad had always called his mom ‘mother’… his use of ‘Nana’ blended the lines between generations in a dreamlike, nebulous sort of way. No matter, I knew who he meant, and so I answered that I didn’t think she was here now, but that she was doing well. He seemed worried about her. “Is Nana coming later?” he asked. And I answered him that she was. It seemed to give him a small measure of relief, and when I saw that, I felt my somewhat misleading answer was in fact the best thing I could have said. This was a new world, and with it came new rules.
My ten year old son understands well. Several times tonight he’d wink both his eyes at me (like his dad he can’t close just one) as a signal to me that he knew, that he got it, that he was right there with me. Dad would say something bizarre, and we’d just look gently to each other as if to confirm that things were still ok. What was of prime importance here was not getting facts or timelines correct, but to understand the emotions at the bottom of all the remembrances. What was the gist of what dad was feeling? This was what was most important. What he was feeling physically – that was another ballgame, and soon we found ourselves a bit limited by those new rules as well.
Dad’s had a hernia for a while, but it only bothers him every so often. Maybe I got him up into a sitting position too abruptly, I don’t know, but for whatever reason his hernia is back today, and it hurt him so much that he wasn’t able to stand up and make it down the stairs for a proper supper. (Secretly I wonder if this might not be the first night of his life that he’s no longer able to join the family downstairs for dinner. Is that new era now upon us?) I’d brought some delicious home-made chicken soup (made with the chickens we’d butchered last week) for supper, and now, as it was apparent that we wouldn’t be dining downstairs, I heated up our bowls and brought them to the bedroom. I held dad’s bowl and watched him eat. Funny how I delighted in seeing such small, insignificant gestures again… the things I’ve seen him do all my life but never really noticed til right now. How with so much of his word recovery gone, so much of his life’s context gone, so much twisted around and re-arranged in his head, yet look how he can still wipe his beard in that way – how he can still take a napkin from me without a second’s pause and use it exactly as he should… how naturally he pockets it, and pulls it out to use again… the way he did it, it is still so him… Such silly nothings really, stuff that everybody does. But seeing him do these few, small and natural things brought me immense joy. My wrist was straining to hold the bowl of soup for him, and my cheek muscles were getting hot from smiling so hard. I was focusing all on my father. It was an unusual place for me to be. As he’s sunk into his dementia, I’ve been more easily ‘allowed’ into his mind, into his world. After a lifetime of tentative eye contact and the most fleeting emotional connections, this is precious stuff here.
We visited like this for about a half hour, during which I fed him some toast (home made sage bread from us) and some chocolate Boost (old folks’ nutritional drink) through a straw (mom had none, now she’s stocked. In future she’ll need straws all the time, I’m pretty sure) and I got him lying back down again and comfy. Gone now is the strong, invisible wall that’s been between us our whole lives. Now, his condition makes it possible – and easy even – for me to express my love for him. For me even to hold his hand. I can remember over the past few years looking at dad’s hands and wishing I could hold them for no good reason. In my family we just don’t do such things. God no. The emotional separation and fear that exists in my parent’s home is almost a real enough thing to knock upon with your fists… Just this evening as we tried to rouse dad from his bed to have some supper, Elihu said to me that ‘you can just feel the sad in this house’. Yes, it’s the reason I haven’t pushed harder to visit them. While I’ve wished for family dinners, and have attended a few, I can say they’ve not become routine for us. It’s a heavy, dark and depressing house to be in. Between Andrew’s alcoholism, mom’s denial and dad’s dementia (not to mention years without a proper housecleaning!) the house is just friggin heavy. Not a pleasant place in which to linger. And with us being so busy, it just makes it easier to pretend the whole situation doesn’t exist. But today, when I get the extremely rare opportunity to look into my dad’s eyes – people, this is big – I realize that I need to be here now. Finally, the defenses are down (well, dad’s at any rate!) and I can begin to share the same space with my father in a real way.
I don’t know how things will turn out. Dad’s gone downhill very quickly the past two weeks even. Nonsensical speech (although I do think there’s something there to be learned if one listens) and an incredibly weakened body make for some big decisions in the immediate future. Mom’s new song is “the next stop will be the emergency room”, but she doesn’t seem to want to take it further. Ok, so ER. Then what, mom? I’ve been trying to get her to find a visiting nurse twice a week for, oh, what, like a year now?? Even two weeks ago she was saying “we’re not there yet”. The emergency room is NOT a haven for super-old folks with old-people problems. Sorry. It’s either nurse at home – or nursing home. And while Elihu himself suggests that the best idea would be to turn dad’s ground floor office into the new bedroom and get a nurse in to help bathe him twice a week – I have a feeling that mom would rather just get him out of the house completely. And ya know what happens then, right? Forgotten by family, far from home, shuttled around under relentless flourescent lights and shoved in front of crappy American TV, confused and finally detached from anything that reminds them of who they are and BAM! There you go. An aging parent who’d rather be dead if only that were a goddam option. !!!
I’d like to keep him at home with someone stopping by to help. But can my mother, at 78, reverse a lifetime habit of controlling her household down to the last cat hair and learn to accept a caregiver into her home?? This is the larger question. Fuck dad’s outcome. Keep the household on mom lockdown at all costs. Sheesh.
So Elihu and I watch and wait from the sidelines. The good thing here is that finally I can express my love for my father without censorship; there is a lot of hand holding now, and deep eye contact that never, ever existed before. And there are some increasingly less tentative loving touches being given on backs, legs and feet…. there are kisses and the gentle smoothing of hair, there are more expressions of love being shared than ever before in our lives. Once upon a time we had all the words we could use, and all the time in the world to use them. Now we have little of either, but it seems that true communication is finally possible. I wonder at the obstacles of the past fifty years that had made this sort of expression so impossible, so embarrassing, so unthinkable. There are just so many cultural rules, and the generations of yesteryear often didn’t cultivate open expressions of love. At least I’m glad to have this chance now, it’s better than never.
It’s hard to wrap my head around the shifts that are taking place. Funny how you just go through life thinking things will always be thus. (I thought I’d be twenty-seven for a hundred more years.) It seems your kids will always need help pouring their milk. It seems you’ll always be able to jump down those last five stairs from the landing. It seems like you’ll always have dark hair. Hell, it seems as if you’ll always have hair! But no, it won’t always be thus, and change, in every single moment, is always upon us. Though the shifts in our own bodies may be far too subtle and slow-moving for us to witness ourselves, from time to time our mortality can’t be avoided. A sudden reflection of one’s face in a window, the choice to take a safer footing, the need for an extra layer around the shoulders… tiny signs arise. The falling leaves and dropping temperatures remind me that we are all constantly on the move through infinitely changing times.
My arthritic, middle-aged hand next to his. So many concerts given with his hand, so much talent there.
Dad’s more relaxed now, you can see it on his face. That, plus he loves his only grandchild so very much and can’t stop admiring him.
Post Script: I am very frustrated with my aging computer. In spite of having recently had someone in to clean it up, it is behaving in strange and new ways. In the above post I see many words appearing in red and underlined with crazy embedded hyperlinks. I wish I could remove them, but haven’t a clue as to how they got there. Today I’m wishing I had a computer that wasn’t as old as my fifth grader. !!
5 thoughts on “Changing Times”
I don’t have any red words or hyperlinks in your post.
When my Mom’s dementia got worse I called a family meeting with my brothers and sister that live close by and asked them is they thought Mom was OK up in her apartment by herself. Her apartment was over the garage at one of my brothers house and another brother lived there with her. But they all went to work and Mom was by herself. They said “yes” she was fine. I then asked if the smoke detector goes off in the apartment, will 1) Mom know what it is?? 2) will she be able to get out?? We made arrangements the next day to have a companion with Mom at all times. Those that could fill in sections of time did and we hired eldercare help to cover the rest. Visiting nurses also came by. The people we hired made it possible for Mom to stay home longer. Eventually we did put her into a nursing home. My heart goes out to you. You might have to stop being the obedient daughter and tell your Mother that things have to change and then change them.
thanks Ed. I’m going to ask my mom point blank how she sees the next six months panning out. A big problem is that we’ve never really agreed on a plan. Many have been discussed, but none final. I don’t want to override her until I hear her side. Likely more posts to follow on the drama…
My dad wasted away with Parkinsons. Before Mom died, she was determined to care for him at home. When she died, we started looking at alternatives. He was still alert, drove his car, but he was heading downhill. With regret we looked at Oakcrest here in DeKalb. The place is AWESOME. His first place was completely an independent apartment, but we got him a food plan. Eventually he went to nursing care where the aids shared their late night pizza and popcorn with him. He was LOVED there. There were lots of activities and gradually lots of his friends. The point is, you might consider looking at what’s available. It might be a lot better than not bad.
We too went through the nonsensical conversations. You are better than I. When he asked me where his mom was I said “Oh Dad, grandma died when I was a little girl.” My sister was smarter than you and said simply that she wasn’t there. We found the best conversations were in the present — wheelchair walks where we could talk about the paintings on the wall or outside, the flowers. We practically wore out a few old photo albums. For dad the one thing that always perked him up was a visit from his great grandchildren. None of them lived close, but when they came he “came to” for a bit.
Don’t give up on having some ups with the downs. About a week before he died we had a great day with him, going out to eat and all in all good time. We hadn’t taken him out in a long time before that. He’d been having trouble eating, but he ate his whole meal, drank his beer and half of mine. While there was much that was very difficult, like you, I cherish that time I spent with my dad as he was declining.
I’m so glad you are there instead of here for this time.
Two more things.
The DeKalb County Hospice works with people in declining health not just people who are terminal. They have an incredible array of services to offer. So you might check with your local organization.
We had to force my mother and father-in-law into Oakcrest. His mom was quickly too far gone to really know where she was and his dad liked it. His dad told him many times that he liked it there. They had a small apartment with a reproduction of their family room from their house. They both gained weight because they hadn’t been eating properly.
Thanks Lindy. Part of the problem is that mom isn’t very rational about all this. Folks make good suggestions – as you have here – but the problem lies in actually putting them into action. I can only do so much. I’ll wait a bit longer, but then may have to intercede. I agree, I’m glad to be living right here and not far away. Hoping we have one more ‘good day’ with dad. Not hopeful, but your story is absolutely wonderful.