weathering the storms

Lately it’s been a rough go with mom as the tide of her dementia swells into another stormy period. We’re getting better at learning how to batten down the hatches, guarding our hearts and steeling our minds against the anger and lashes, but it’s never easy.

When she’s sweet, she’s very sweet and it’s a pleasure to be with her. But this darkness is in her, too, and it often surfaces without warning. The literature will tell you this is common with Alzheimer’s patients, these uncharacteristic outbursts of anger, but the psychological underpinnings are rarely mentioned. It’s usually portrayed as a kind of uncontrollable symptom, like a seizure. But the deeper truth is much more traumatic. Mom is acutely aware of her mental decline. Compared to last year at this time, she’s definitely far more accepting of what’s happening to her, which has fostered what I’ve come to call a “sweet phase” in her behavior. But sometimes circumstances and events draw more focus than usual to her brain changes, holding up a frighteningly harsh mirror. It’s as if a tsunami of toxic emotions flood her synapses. With her rational capacities already decimated by the disease there’s no stopping or controlling it. We just have to ride out the storm – anger, resentment, bitterness, hopelessness, stubbornness, misery, desperation. She can’t be reasoned out of it. She’s incapable of reasoning anymore, and any attempts to talk her down, no matter how gentle, only escalate her entrenchment in the horrible tragedy she’s experiencing.

I know the storms will continue. They pass eventually but always return, back and forth. These rough patches challenge and tear at me. Her drama is deep during these times, full of toxic emotions and twisted stories. The dementia plays with her memories, combining and stretching them out with fantasies and fictions that spin off from the emotions. Yet in the midst of this she still needs care and looking after, and it can be incredibly damn tough to see to it that she and dad are well taken care of when she’s fighting so hard. This is such a difficult time for all of us. Such an intensely difficult time.

The deeper her rages, the more deeply I find myself reflecting. Not so much an intellectual reflection, but a reflection at the level of sense/feeling. These powerful storms can pull you in. It’s all too easy to get caught in the waves. I’m fortunate to have some distance. I can choose when and how to weather them since I live a few hours away, but dad is there for the brunt and duration of each and every one. I honestly fear for his well-being more than I do for mom’s. The stress of living with this is taking years off his life and he doesn’t have many years left. Just yesterday I read of a study from Stanford University showing that 40% of Alzheimer’s caregivers die from stress-related complications before the Alzheimer’s patient dies.

It’s such a hugely complex matter. No answers in sight. I find myself observing this impossibly complex play while being an actor in it, myself. A strange combination of objective detachment while being inextricably part of it.

I also have this distinct sense that it’s not just mother-daughter dynamics going on here. There is an ancestral multi-generational thing at play. These deep and often deeply irrational emotions and stories swirling now — the energies driving them feel as though they’re rooted in generations of build-up of muck from emotions, stories, karma. It’s just that we’re the ones who happen to be playing them out at the moment.

Let me fill you in on some recent events which led to her current storm. Last week my husband and I traveled out of state to attend my son’s college graduation. My parents came along with us, intending to see the graduation also. Just hours after we arrived, as we were walking down the street toward a restaurant for dinner, my dad had a terrible fall. Face-first onto the sidewalk. He was disoriented and bloodied. We called an ambulance and spent the night at the ER. As we talked with the medics they asked if dad was taking any medications. I noted he was taking a blood pressure pill, a statin and Nexium. Mom started to argue with me, insisting he wasn’t taking any of those, but she had forgotten and thankfully dad was conscious enough by this time to affirm that yes, he was taking the pills I’d noted. She struggled with other questions as well, but between myself, my husband and my son we were able to get things sorted out with the medic’s questions.

The rest of the night in the ER was much the same. Mom was confused and couldn’t remember much. She would get disoriented and anxious. If I hadn’t been there with them, she would have been almost as much for the hospital staff to handle as dad was. I spent equal time between tending to dad’s pains as I did trying to calm mom’s anxiety. I knew mom was feeling overwhelmed and largely useless, not being able to answer the many questions from the medical staff and feeling confused about a lot of what was happening, but dad’s injuries took priority. This was not the time or place to engage in the difficult dance of trying to make mom feel better about herself. I did my best to keep her calm and informed, but the focus was on dad.

We finally got in to see the ER doctor and dad was tested and x-rayed to determine the extent of his injuries. Fortunately he had not sustained a concussion or broken bones other than a small fracture to the bone just below his right eye. He was discharged and we headed back to our hotel. The following days seemed to pass as usual, although dad’s injuries meant he wasn’t able to attend the graduation.

When I say “the following days passed as usual”, I suppose I should update you on mom’s condition these days. Her memory is worse than ever. One afternoon I got a call from my uncle (her brother), updating me on some medical issues that their other brother was dealing with. Mom couldn’t remember having a brother, or any siblings for that matter. We didn’t speak much of it, not wanting to upset her over her lack of memory. The next day, though, the subject came up again and she did remember having a brother then. That’s how it goes now. She has good days and bad days. Some days she remembers more and seems more like her old self, while other days she’s confused and agitated.

It was interesting for my son to spend a few days with his grandmother. He doesn’t see her often and so doesn’t experience what she’s like. We all chuckled to ourselves one afternoon when we drove to a nearby town to visit. We lost count of how many times she asked what town we were in. As soon as we told her where we were, she would ask again after just a minute or two, forgetting that she’d just asked the question. After answering her again and again, she suddenly got excited upon seeing a sign that posted the name of the town. She gleefully told us what town it was even though we’d all been telling her for the past ten minutes.

Another common thing for mom these days is just the matter of speaking and carrying on conversation. She can’t think of the words to use to say what she wants to say. It’s almost every sentence now. I try to make light of it, almost like a game of “guess the word”. She usually laughs right along with me, both of us trying to make the best of a difficult and frustrating situation for her.

Dad’s fall was scary for me. It could have easily been worse. He could have broken a leg or hip, or could have ended up needing to stay in the hospital for a period of time. My parents have been saying for years now that they plan to move closer to my sister and I, but it still hasn’t happened. Mom has been saying for at least a year now that she’d like to be in a retirement facility. I even sat down with her about a month ago, just her and I, asking her what her wishes were. She told me she wanted to live in a place where meals were made for her and she wouldn’t have to drive, just like where her sister and husband live (a typical retirement/assisted living facility). I even asked her if she wanted to continue living with dad, or live there by herself (since she often says she wants to live alone). She surprised me, telling me that she and dad got along very well and that she wants to continue living with him. We talked about whether she wanted a one bedroom or two bedroom place, what other amenities were important to her, etc. Soon after this conversation, she and dad both agreed to tour a few facilities. Unfortunately, for reasons I’m still unclear on, they changed their minds, deciding instead to just move to their townhome (a place they bought in the area here, in addition to the home they own a few hours away). I’m all for supporting whatever they decide, but this idea of just living in their current townhome was less of a decision than it was yet another avoidance of actually making a decision. Their townhome has two very steep flights of stairs, which pose a big falling risk for my dad who now shuffles his feet and has a hard time picking them up thanks to the deterioration of his back. He uses a cane now, but given his inability to lift his feet much I really wish he was using a walker. The back surgery he had two years ago hasn’t improved the situation at all. There’s also the matter of isolation. Mom will not be driving here, putting the burden on dad to get her out of the house to make sure she gets some socialization. Mom also struggles with meals. She’s able to cook her own breakfast, making the same thing every day, but lunches and dinners are always either restaurant meals or frozen dinners from the grocery store. Mom can no longer find her way around in grocery stores. Dad needs to go with her to help her find things and pick things out. She sometimes picks out inappropriate things that dad knows she won’t like, but there is no talking her out it when she makes up her mind. So dad will buy the things she wants, only to bring them home and have her exclaim, “Why on earth did you buy this??” When he tells her that’s what she had picked out, she insists he’s lying and that she never chose it. Every time dad tells me this story (it happens a lot) I remind him how much easier it would be for both of them to be in a place where the meals are prepared for them and menu choices are both appropriate and contained (as opposed to a grocery store full of options).

When we returned from our trip last week, I decided to schedule another facility tour. Perhaps it was unwise of me (or perhaps it wouldn’t have made a difference either way), but I decided not to ask them if they wanted to do this. I just went ahead and made an appointment — a tour and dinner at a retirement facility to take place after my parents and I had gone to a movie one afternoon. I hoped it would go fine. I assumed they were both as shaken by dad’s fall as I was. That, like me, they were realizing the need once again to plan for the future, for their own well-being and safety. Dad was happy to go along with it, but mom balked. As we drove toward the facility (I’d told them of our tour and dinner plans as we exited the movie theater) I could feel her sinking into a simmering sulk. Dad and I both worked at keeping the conversation light and humor-filled, but as soon as we sat down with the facility director mom got obstinate, refusing to do the tour and insisting she didn’t want to be in a facility. It was an awkward meeting, to say the least. Dad did the tour with the director while I sat with mom in the lobby. I know from experience that when she’s agitated like this, it’s vitally important to STAY CALM and KEEP POSITIVE. I smiled and tried to engage in a some light conversation but she lit into me, accusing me of forcing her to do things she didn’t want and lecturing me on how this is HER life and HER decision, not mine. At that point I felt the need to speak up, though I did so with a smile on my face and extreme gentleness in my voice. I pointed out that this was not just her and dad’s life that were affected, but mine, too. What if dad had become incapacitated from his fall? What if he had needed to stay in the hospital for a time? It would mean that I’d need to drop everything to move back home with her until dad was better. “No you wouldn’t”, she said, “I would go to the hospital to visit your father.” I replied, “No, mom. I would have to move back home to take care of you. You need help with driving, grocery shopping, setting the thermostat, etc.” She started to argue with me but then fell silent. Had she suddenly remembered that she does need help? I didn’t press it. Didn’t want to argue.

As we sat there, I also decided to mention the conversation she and I had just a month earlier when we’d talked about her desire to live in a place where the meals are made, and where she could make new friends (yes, she actually named that as something she wanted – !!!). I admit I knew before bringing it up that she wouldn’t remember, and she didn’t. She insisted she’d never said such a thing. There was nothing to do but drop it.

But between dad’s fall, the confusion of the whole trip (for her), and the negative experience with the facility tour, it launched mom into another “storm”. Her memories from the past week, combined with a lifetime of emotions, experiences and tendencies, have all become whipped up into a category 3 hurricane. We’re still waiting to see if the storm continues to gain strength, heading toward a category 4 (the category 5 storm was the one that happened the Christmas before last). As of yesterday, dad tells me she’s not talking to him other than to insist she wants a check for “half the money” and that she wants to live alone and dad can go to live in that facility we toured recently (she has formed this idea that he wants to live apart from her, which is not true but she won’t be dissuaded). She’s also back to accusing dad and I of ruining her life and “changing everything”, spending away all their money and taking everything away from her. She also feel anger that I “took over” when dad has his fall. She doesn’t remember her confusion or the fact that she couldn’t answer any questions. All she remembers is that she felt useless, and she blames me for it. Of course, the plain fact is that the only thing that has changed is her cognitive abilities. They still live in the same house, no papers have been signed, no decisions have been made, though yes, I am definitely putting the pressure on to get some plans in place. I wish I could tell her, “If you two don’t make a decision about your future, then the decision will be made for you.” It’s well past time. Dad knows this. I’m constantly bringing this up to him. But at this point he’s still hoping that he and mom can come to a decision together. He’s hoping against hope that he can catch her on a good day and she’ll agree to what needs to be done. That would be great, wouldn’t it? But good days are fleeting, and it’s just a matter of time, sometimes even just minutes, before she forgets and insists on the opposite.

Once again I find myself in this place of needing to let go. Maybe they’ll never be able to make the decision to move? I need to be okay with the possibility that the only thing which will get the ball rolling will be something traumatic, like a worse fall for dad, or mom getting in a car accident (yes, she’s still driving but definitely shouldn’t be) or her getting lost and we can’t find her for a time (she’s constantly getting lost these days). No doubt some are reading this, wondering why the hell we don’t take away her car keys, or get this move to happen. Believe me, if I could I would. It’s such a heart-wrenching dance, wanting my parents (especially my dad who is still very much of sound mind) to maintain their autonomy for as long as possible, wanting to respect my dad’s authority (mom is too far gone at this point to be confident in her ability to make sound decisions). It’s so freaking complicated! I can see that he has fears, too, which are keeping him from making the decisions that need to be made (like the matter of mom still driving). So at this point all I can do is to keep the pressure on, keep talking with my dad and provide as much support as I can to help the decision process along.