Grandma is having trouble remembering.
When I first met her she was having some trouble, but it's become much more profound over the past few months. I have moments when I'm afraid we moved her one too many times, because every move was harder on her; but then I remember that we moved her home so that she wouldn't wind up in a nursing home and that is still a very good reason. Actually, I'm increasingly relieved we moved her when she did because if we were to try to do the same thing now the upset would be exponentially harder on her, I think. The loss of memory is fairly normal, people keep telling us, and eventually it gets to the point that changes in routine of any kind so throw a person off that it can be weeks before they're not confused by the change anymore. "That's just how it works," people say. "Your mind just changes as you get older, and these things happen."
Still, it breaks my heart almost every day.
Imagine living in Grandma's place. She wakes up in the morning and has trouble knowing what day it is, even with three carefully crossed-off calenders placed in all the spots she can look at them. She does not remember exactly who the people she's living with are. She's not even sure how many of us live here. When she's reminded it's just Ben and I, that we're her grandchildren and we're expecting, she's shocked and hurt because we didn't tell her we were pregnant and everyone else knew it first. She's troubled when she can't remember why she walks with a walker and thinks it was just a little fall that crippled her, so she's terrified of what will happen if she has another little fall. She feels that I'm a know-it-all because when she asks why she has a walker and I tell her the whole long story, she can't remember the details I'm telling her and she thinks I'm either making it up or somehow deceiving her because she can't remember.
Sometimes this is frustrating (probably a hundred times more to Grandma than it is to me!), but to be honest most of the time it makes me really sad. Because one of the most terrifying things I can think of is to not be able to remember. At first I was getting mildly annoyed when Grandma would ask for the fifth or sixth time that day what day it was; but then I started catching on that it wasn't just absent-mindedness. It was true memory loss and it was really a new question each time. As that has progressed to more and more things - and even as Grandma has gotten more irate with me for things like remembering how she walks with a walker when "you weren't there, how do you know?" - I've actually become more and more patient with it. Because somewhere along the way I've realized that it's our (Ben's and my) position to be Grandma's memory. Not to be her teacher and not to lecture her on the things she's forgotten, but to be a sort of walking, talking notebook keeping track of all the things that Grandma wants to remember but just can't.
When we were in Pennsylvania, Mom's cousin Sandy gave us a piece of advice gained from experience of caring for her own mother for 30 years: "When she asks over and over about simple things she can't remember, she needs mostly to know she's safe. Someone will always be available to remind her of the thing she wants to remember."
There are a few things we've been doing to try to help. We've begun a project where we're putting together some small book-sized photo collections entitled things like, "Why I Walk With A Walker" because when Grandma sees photos, she remembers. This is when Mom's penchant for documenting everything - even holiday meals - is rapidly becoming even more valuable than it already was. I'm also trying to write every little thing that I know is coming up on a desk calender by Grandma's chair. She reads it like a book every day, sometimes a few times a day. Whenever she asks a question, I answer it fully instead of just the brief answer you would normally give someone who can remember all the back details that might go into the question. If Grandma asks, "What's today?" she wants to know the day, the date, and the year, and probably anything we were planning to do that day. When she asks, "Where does everyone sleep?" she needs to know who's living in the house, how we're related to her, and to be reassured that we are there every night while she's sleeping.
It's a whole facet of life that I've never had close contact with before and it's an astonishing thing to witness. It's requiring thought and patience and care that I've never had to summon before. It's actually requiring more love than anyone has ever needed from me before. It's a tricky thing, being someone else's memory. But Grandma needs it, if only because if someone can be her memory, then she can feel safe.
Yet amid all of this, Grandma is living a life I don't think she ever imagined possible. Last Saturday is a good example. She woke up in the morning, had a leisurely breakfast (with berries on her cereal, which she really likes), then got in her transport chair and was wheeled next door, where she spent the afternoon watching her great-granddaughter playing on the floor, sharing lunch with Mom and her two granddaughters, watching all the centerpieces get put together for her youngest granddaughter's wedding, and watching TV with her son-in-law. Her children and grandchildren and great-grandchildren were in and out all day. She had her favorite macaroni and cheese for dinner. People made sure she was cool enough or warm enough and took care of getting her medication to her on time. She looked through stacks of photo albums from when her grandchildren were younger (one of her favorite things to do). When it was time for bed, she went next door to her house and went to bed in her own bed, not in a room she's just visiting while she's in town.
I hope she still has the memory that allows her to know how special this really is. Because it's perfect. It's how life should be. And I am very blessed to have a piece in making it possible.
Hearing and Believing
I made a trip with Grandma Lila and Mom Turner today to have Grandma's ears and current hearing aids tested. I've been noticing over the past few months that Grandma is having a harder and harder time being able to hear - specifically, she can't hear the pitch my voice is at. For a while I started compensating by dropping the pitch of my voice and speaking loudly and slowly, but it's gotten to a point where she can't hear most things clearly anymore. She used to watch TV at a semi-loud volume; but now it has to be blasting at full in order for her to hear it.
The thing about this is that hearing aids are expensive. So if the loss of hearing even with them just means people have to speak up...well, people can do that. But the loss of hearing is beginning to intrude on Grandma's life. When Kim calls on the phone, Grandma can't hardly hear a word she says. Even her sisters - who have a pitch of voice she normally can hear fine - are having to shout and repeat themselves for her to hear them.
Through my brother Jonathan, I became aware of what it's like not have good eyesight. In his case, he didn't try to stand or walk until he got his new glasses: his eyesight was so skewed he had no depth perception and therefore no balance. Would he have walked earlier than age three if we'd just gotten his eyeglasses? We don't know. But it did occur to us all to wonder when we watched him stand unassisted for the first time two days after getting them.
Through Grandma, I'm now experiencing the frustration of not being able to hear. It's no light matter. Your family can be sitting around you at a little family gathering chatting and laughing and you have no idea what's so funny. People have to repeat even little things over and over while you struggle to piece it together, things as simple as, "It's dinnertime, Grandma!" If you need some help and call from the bedroom, you can't hear someone responding, "I'm coming, Grandma!" so you continue calling and calling hoping someone somewhere can actually hear you and will be arriving presently.
It's a very isolating, infuriating, generally annoying problem: and when you're someone who loves music and wants to be able to teach kids - who have high, soft, indistinct voices - it's debilitating.
According to the testing done today, Grandma has "severe to profound" hearing loss. She isn't deaf, exactly; but she has almost no reception for higher frequencies and even the low ones have to be boosted significantly for her to hear them clearly.
The thing is, she doesn't believe us that she really can't hear.
She figures everyone has problems hearing everything all the time. All those little annoyances and frustrations I mentioned earlier are troublesome to her at the time they happen, but when we discussed them today she brushed them aside as no big deal. She's being cut off from the life going on around her and she only recognizes it once in a while when something really hard to miss intrudes on her. She does not put her fear of someone not coming when she calls together with her inability to hear them responding to her before they can physically get there. She feels lonely but doesn't realize it's because when conversations are going on around her, she can't join in because she can't really tell what's being said. She gets frustrated watching TV and movies because she can't tell what's going on; but she doesn't realize it's because she can only clearly hear one or two words out of every ten.
I spent a lot of time thinking about this the past few days, about what it means to not be able to hear and not to recognize that you can't. I can recognize - even if Grandma can't - how far her lack of hearing is causing her to retreat from what's going on around her. But because it's happening a little at a time, she gets bothered for a moment about not being able to hear this or that, but then just shrugs and moves on.
I think a lot of us are like this about other things. Looking in from the outside, people can see how someone else has a handicap that's causing them no end of trouble and frustration: but the person who has the problem doesn't recognize it the same way. "So I lose my temper now and then," someone like this might say. "That's no big deal - people do it all the time, right?"
They don't see that the little moment of losing their temper caused their husband or wife to be upset the rest of the day, taught their children that it's okay to let anger get the best of them, and ultimately causes all kind of little rifts and unpleasantnesses that just grow and pile on each other until they wind up divorced with children who don't speak to them.
In my family, we have a problem called Feeling Sorry For Myself. One of my great-grandmothers died from this problem. Do the rest of us take it seriously as a life-threatening disease? Of course not. To us, it's just a little problem. Everyone does it now and then. What's the big deal?
We don't see how feeling sorry for ourselves saps our life of joy and contentment and causes us to totally ignore what is good in our lives until we're miserable and making everyone around us miserable. And all the while, we barely even notice we're doing it. Just like with Grandma's hearing, we notice it now and then when it gets particularly obnoxious; but otherwise we just live with it getting steadily worse and worse while our friends and family look on and say, "This is a serious problem! Something needs to be done!"
Thankfully, Grandma can get hearing aids; and whether she believes us now or not, I'm confident she's going to receive a very happy surprise when she puts those new little computers in her ears next week. In the meantime, I'm going to be listening for the little hints people give me that I have annoying or even dangerous problems I'm overlooking just as completely as Grandma's overlooking the problem with her ears.
Because there's nothing worse than a problem you don't even believe is there.
Back to Normal
Well, mostly back to normal, anyway. I'm still having occasional random moments of weepiness, but that's beginning to fade. Today I got all the laundry finished and put away (I washed a lot on Friday, then ran out of energy before folding everything and getting it hung up), cleaned the house, washed the kitchen floor, went to an insurance appointment with Ben, stopped in the local precinct so Ben could vote (I still have to vote at my old precinct and I got an absentee ballot last Thursday since I didn't know how much I was going to be ready to be up and around), and made three normal meals instead of the sort of sketchy ones I've been making over the past few weeks. I did not have a nap attack and did not have to sit down at 5:00 because I was feeling queasy. For pretty much the first time in my married life (and today is our three-month anniversary!), I feel myself. It's kind of weird.
One of the strangest things about this is feeling like nothing happened. Physically, I don't feel any different than I've felt most of my adult life. I can't tell I was carrying another little person around with me. This has actually been at the root of some of those random weepy moments, because it's as if I had a baby that just vanished without a trace. I'm not sure this would've made such an impact on me if I had other children, but it certainly made an impact this time around. A friend of mine described the weeks after a miscarriage as bringing her a lot of sudden thoughts like, "Wait, this is just wrong - I'm supposed to be pregnant right now!" and I know what she means. On the other hand, being pregnant was a whole new experience and not being pregnant is something I'm used to. I have no frame of reference for what was coming next, no memories of what it feels like to get really big and uncomfortable or have the baby move or give birth or nurse or any of those things that were "next on the agenda" a few weeks ago. So most of the time, the occurrence of thoughts like, "today would've been Week 13" only brings a sort of wistfulness because I have nothing in my brain to really tie that thought to.
Then there are other times when I am suddenly and intensely sad and Ben has assure me that all is still well. I'm glad this is fading, because it's sort of like being ambushed - you're walking along and everything's fine until suddenly wham! you're crying over practically nothing at all. Mom is often like this after a new baby is born. The family joke is that she cries over Hallmark commercials in the weeks after a new birth. I didn't expect that to be a part of this week because I guess I sort of figured this baby was so tiny and so new and my body had never had to make such big adjustments that it wouldn't have to adjust too much going back to normal. In a way, that's true; but apparently I'm still susceptible to crying at odd moments. Ben keeps getting concerned I'm going to think he's taking this all too lightly because he isn't having the same kind of difficulty and I keep telling him I'm really glad he still has that beautiful Turner smile always ready because it reminds me that all really is very well.
In other news, Grandma Lila has been officially cleared to walk and make all "transfers" (getting in and out of bed, into the bathroom, etc.) on her own since she has strengthened up a lot and is doing so well. The physical therapist will probably continue to come for a few more weeks, but then she'll mostly likely be discharged from care and will be back to where she was before she fell in November. Sort of like me: it's as if nothing ever happened. I think we're all getting more sleep these days, as Grandma doesn't have to wait for someone to come help her to the bathroom and we don't have to get up every few hours either. It's a lot quieter around here than it was for a while at night.
We're also gearing up to get drawings and plans ready for our addition as it looks like this winter was pretty much nonexistent and spring is coming early. We have to consistently have some warmer weather before we can pour the concrete footings for the addition, but that time seems to be approaching fast and we need to get our act together and get things nailed down (ha, ha) and ready to submit for permits. We have a pretty good idea what we'd like to do indoors, but we have some interesting challenges when it comes to things like designing the roof and figuring out exactly what dimensions would suit Grandma's bathroom best.
And I think maybe it's time to resume taking walks. I've missed them the past few weeks. There has been a sudden appearance of birds singing in the morning again which makes me think spring really is just around the corner and I've been inside a whole lot lately. Maybe early tomorrow Ben and I can go out and take a brisk stroll around the neighborhood.
Now that would really be getting back to normal.
Living Through Responsibilities
Ben and I have been having a long ongoing conversation ever since we started discussing living with Grandma Lila. It involves what it really means to live and what makes people interested in living.
The first premise of this discussion is that "living" is a lot different than "existing". There are a lot of people out there who are still breathing - even without help! - and yet aren't really living. Just sort of...existing until it's time to stop breathing. Most people recognize this and tend to apply a lot of different standards to a life to try to define what it really means to live ("if you don't have your health, you're not really living!"); and it's in that process that people can frighteningly come up with the idea that if you're not living the "quality of life" they define as "really living", you're probably miserable and it would be a mercy to put an end to your useless existence.
Ben and I haven't been discussing whether or not some people should go on living: we've simply been trying to identify the characteristics that define a person who is really living and has that unique sparkle in their eyes.
One of the things we've noticed is that people who are really living often have a variety of things they do to feel useful.
Depending on the person, sometimes those are very small things; or they're a whole lot of really big things. People who are interested and engaged in life have at least some tasks they feel responsible for. If you start removing those tasks - even if it's out of kindness - you can see an immediate decline in that person's enthusiasm for living. Irrelevance is a deadly thing. Human beings need to be needed or they sort of waste away.
When my family moved around the corner from my Nana and Papa eleven or twelve years ago, one of the things they were concerned about was that we would start trying to take over things that they were handling just fine on their own, like cutting the grass. They had noticed with their parents' generation that when people got such tasks taken away from them, they would start declining and actually be no longer capable of what they used to enjoy, which led to sadness and general lack of desire to live. We had to be very careful not to help them unless they really wanted help. You really can kill someone with kindness, they taught us.
When we looked at Grandma Lila living with us, we started considering what things Grandma might need responsibility for to keep her mind engaged so that she still had LIFE, not just a boring existence. They didn't have to be big things, simply things that every day Grandma was responsible for so she would be living, not declining. Grandma's personality is such that she's not a "busy" person and is quite contented to have a few small things she is responsible for every day. One of the things we figured out is that she cares very much for how she's dressed, so we've been backing away as much as possible from getting her dressed so that she has as much in her command as she's capable of. It takes her a long time, but when she gets herself all dressed and puts her jewelry on and puts makeup on and does her hair and brushes her teeth, she tends to be much more alert and engaged than if we're in a hurry and need to hustle her through the process.
Another place we see Grandma really come alive is when it comes to playing (and teaching) piano. She will work hard on that for hours and she's in a rare good mood when she's decided she's done. I love to hear her play because my mom is very similar in that she'd practice for hours and hours a day if she had time. Grandma playing piano sounds like home to me because she likes all the same music Mom does. We've been encouraging her to keep playing everyday to regain the nimbleness in her fingers and remember pieces that got rusty over the weeks she was confined to bed because when she works on the piano, she feels as though she's really DONE something with her day.
Tonight she's actually giving Ben lessons on reading and playing proper sheet music. She's being quite a drill sergeant. I told Ben she's getting him back for his tough drilling on her daily leg exercises.
We've seen a lot of change in Grandma since she's been home and we've been seeking out what things we can make her responsibility so that she will feel truly alive, not just like she's passing the time. She's become much more independent, getting herself around the house, clearing her own dishes off the table, and generally living like she's home again rather than in an institution environment. Hopefully, she feels like she's living. I know right now she does - she has a light in her eyes when she's teaching piano like no other time.
And the light in the eyes is a sign of someone who's living.
We had our first training session in how to move Grandma Lila without damaging her healing leg yesterday.
The thing I found the most interesting was how much thought has been put into developing methods of doing something that on the face of it seems almost impossible: how do you move a full-grown person around without being able to scoop them up and carry them like you would a baby? It's not like most people are strong enough to just lift another adult out of bed and put them in a chair. I mean, sure, Superman does it all the time...but unless Ben is REALLY hiding a little secret, neither of us is going to running around carrying Grandma from place to place anytime soon.
The good news is that there are ways for normal people to manage.
First of all, right now it takes three people to move Grandma: one behind her, one in front of her, and one person just in charge of keeping her leg stable. We strapped a thick canvas belt around her waist and used that to hold onto and move her instead of holding onto her body, which would be a lot harder to grip without hurting her. There were also a few tricks about using gravity to our advantage, especially when it comes to paying attention to which side to approach moving Grandma from depending on what we're trying to do. We also learned that it's effective to link our arms under hers to shift her around on the bed rather than using our hands, which are weaker and could actually hurt her shoulders because of how they're shaped.
And above all...always lock the wheelchair wheels before doing anything with Grandma in it! Having the chair slide away mid-move could be...ouch. Nasty.
Ben and I were midway through moving Grandma back into bed and I thought, "Yikes...we still have a lot to learn!"
Thankfully, the leg that was injured is her weaker leg in the first place, so her stronger left leg is still well in commission. She's having to do a lot of learning right along with us to know how to use that stronger leg to her advantage, but the point is she's not crippled and unable to move at all. She can stand on her good leg and help us get her around and that's going to be essential to bringing her home.
Turns out it's much easier getting into bed than out of it again. Big surprise, there, eh? That seems a basic comment on the Human condition in general. Unless you're a baby. Then you always want to be up, not lying down.
But philosophy aside, we watched the physical therapists getting Grandma out of bed and then Ben and I were supervised in getting her back in. Grandma gets a little worried when it comes to us moving her and I don't blame her. It's not the gentlest process (we really have to work hard and we are not poetry in motion!); though hopefully with practice over the next few weeks we'll be much more graceful and quick by the time she comes home.
We'd better be. Because right now we're definitely rank amateurs. As we told Grandma, though, this is the worst it's going to be. We can only go uphill from here, because right now she hurts the most she's going to throughout this procedure and we know the least about helping her. From now on, she's going to be getting better every day and so are we.
Wife of Benjamin and mother to two wonderful little girls who are getting bigger every day. Enjoys writing down thoughts and discussions we are having within the family and sharing them with whoever is interested in reading.
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