When your parent has dementia

Of course, it could be a sibling or grandparent or spouse, friend... lots of things that can hurt. 

The lens I know is that of a daughter watching it happen with her mother. There was an aunt in Italy, but we only visited once during that, and it's just different. Nonetheless, when I send updates to my cousins, I know her son feels them differently than the others. 

The older ones also remember seeing it with their grandmother, but that's different too, even if there are things that overlap.

Also, while there are different types of dementia with different effects, the diagnoses are not always exact. My mother probably has Alzheimer's combined with some vascular dementia. 

The estimate is that one in three adults will develop dementia. 

That worked out exactly for my mother's family. Of the six who lived to adulthood, two of them got it.

That can raise chilling thoughts of your own susceptibility. I do think about that sometimes, but just dealing with Mom's is kind of all-encompassing.

This can also be an area where having family discussions are important, but perhaps not the whole family. A parent may be in denial, and the children need to talk together.

Denial can work in different ways, though. A common issue among siblings is that some will recognize the change and others will refuse to. It is usually the one who is closer and sees the parent more often who comes to terms with it first, but it's not just a matter of what you notice.

First of all, there are different stages, some of which can be quite subtle. Different people don't necessarily go through them in the same order. In addition those changes can be abrupt.

Some different stages we passed through were intact memories but unable to enter new things into short-term memory, able to stay on track if notes were left and meals were prepped, getting very weepy when left alone (I think because without memory working correctly, absence felt more permanent), constantly trying to get home (from home), and cheerfully telling long stories about things that never happened. 

This year has seen the loss of coherent speech. 

One thing that is important to remember is that it is not just memory. The hippocampus starts failing at processing new information, so it doesn't get forgotten as much as never entered into memory.

Some symptoms are more noticeable than others. That can make the denial easier, but so much of it is emotional. 

It really hurts when your parent no longer recognizes you, or is trying to get away from you so they can go to their children.

You are not going to be able to do what you need to do if you don't face it. It is so common for people to wander off, and they don't always get found.

I can give practical advice, like the importance of respite care when you are caregiving. Breakdowns and burnout are very real. A breakdown can be fixed fairly easily, but should still be avoided. Burnout lingers a long time.

I recently advised someone with some concerns to have her husband take a MOCA test. (Don't let the president give it a bad name.) If the test doesn't show anything it will be a relief, but if it does show something they can plan. There are medications that can slow the progress and that is worth a lot.

However, going along with this week's theme, there is a lot that you can't control. What ends up being the most important preparation is the person that you are.

How do you handle adversity?

How is your patience?

How personally do you take things that aren't really personal?

Those aren't easy questions, but good responses are useful under many different circumstances. 

Lack of control

Ironically, as I was working on yesterday's post about hospice, I was about to receive a call that the transfer had not gone through correctly. One thing about Medicare rules is that plan changes have to happen on the first of a month. 

That means Mom is still with her previous care provider -- who does not provide hospice services -- for another month at a time when we are measuring her life in weeks.

There is a lot that it probably won't change. Music therapy and therapeutic massage can be nice, but that's about improving some moments, probably not changing the course.

I do worry about some of the medication options. I did feel like a total failure and cried.

I thought I was going to write about dementia today, and dealing with it in a parent; that is a thing that many in my generation will deal with.

There's not a lot that you can control with dementia either, so it all kind of fits.

Apparently, Elder Place is notorious for requiring five days to get things switched over. I think we started the paperwork four days before the end of the month. It seemed like it should have been fine. The hospice group was surprised when I called and told them.

I called Elder Place before starting the switch because I wanted to make sure I wasn't selling them short or being underhanded or anything like that. I am pretty angry that they didn't warn me that it might be cutting it too close, and I am going to tell them that, probably later today.

However, it wouldn't have changed the switch to them when it happened because there were no other options.

We needed someone who took Medicare and Medicaid and did on-site or video visits and would do them specifically to Waterhouse Ridge and had an opening for an appointment to start primary care soon.

We thought we found someone who could work, but while they were okay with video visits for established patients, they would not do video appointments for new patients. We were going to have to drag Mom to Northeast Portland in November. Transporting her was difficult already, but that was far. Anyone located closer would be over three months to get in.

Medicare rules do affect things, as does some of the infirmity that comes with aging, but an additional problem was doctor availability. That was not limited to seniors; it came up a lot for many patients that I spoke to through my work.

That is not just a matter of insurance and means and doctors burning out, but also the education of new doctors to fill the ranks. That system is seriously flawed and there is no reason to be optimistic about it improving under this administration. 

You can't control any of that. It sucks, but it's part of life.

It would not be unreasonable -- as people plan family gatherings for the holidays -- to try and have some conversations about things that might happen and how those things might be dealt with. 

People might talk about insurance for long-term care, which can be very expensive, but also might not fit certain needs. 

It is not uncommon to find that you have enough money to not qualify for benefits but not enough money to pay out of pocket, which generally involves a process of running through all of the assets until they are gone. 

This has led some spouses to divorce so that the one who is expected to live does not have to do so bankrupt.

(My family was lucky; we didn't have anything to start with.)

Those things aren't good, and they aren't practical. Let's say you can afford the insurance, but then whatever happens happens in a way that doesn't meet the terms (that happens surprisingly often with supplemental insurance like AFLAC). 

Really, what we would want is a society with better overall coverage, which would benefit everyone. 

There is a bigger discussion there, which could open hostilities at some family dinners.

I'm not trying to solve that right now.

What I am saying -- and this is not a solution to anything -- is that there are extreme limits to what you can predict and control.

That doesn't mean it's not worth thinking about it and acting on things that do seem important, but just that there are limits, no matter how smart and hard-working you are.

Sometimes that leaves you crying and feeling like a complete failure.

Then you get back to work, if for no other reason than that there is nothing else to do. 

Checking your parent into hospice

I went through the hospice admissions interview for my mother yesterday.

I am writing about it because it is very much on my mind, but I also remember some other posts that were very well-received.

The first one was when she had her first knee replacement. Like now, I wrote about it because I was thinking about it a lot, but also it got an unusually high number of page hits. My theory was that other people had been researching knee replacements and shared it with family. 

It came to me really clearly that there were lots of people dealing with the same things. My generation has aging parents. The first knee surgery was in December 2010, but that hasn't become less true. Some of us have lost parents, but some of us have that coming up.

If there are some things where reading about them now helps you understand better later, that's great. 

It can also be good to remember you are not alone.

Mom was already in hospice once, so I learned a lot of this then. The first thing to know is that hospice is not a place. It is a medical status, so you are admitted and can be discharged.

The biggest change is that there is no longer curative treatment; everything is palliative. Instead of trying to change conditions you are trying to manage comfort. 

A lot of the technicalities do with who pays for what. There are ways in which the hospice reimbursement is better. This is why sometimes you may feel some pressure to switch to hospice, though there are still medical conditions that are legally required to be met. These conditions are periodically re-evaluated. 

I did write some about her first admission. It did not really seem like death was imminent, but there were all of these changes happening where we were not sure what was going on. When she was discharged from hospice, it was because her condition was stable and there was nothing going on that made it seem like she would die within six months.

Bear in mind that there are a lot of things that can't be predicted. If someone is in congestive heart failure, or really any kind of organ failure, there is a path you can trace. With strokes and heart attacks and aneurysms, there might not be clear indicators that something is pending. 

Now there are more signs that we are getting closer, with that still being hard to pin down. Maybe weeks; probably not months.

In the time over which she was first admitted, then discharged, and now being admitted again, she never changed her location. She did have to change her care providers a few times, because of rules and things. That can be disruptive. If you are looking into choosing a health plan or an assisted living facility, it's not a bad idea to find out if they have the ability to provide hospice care.

(Also note that changing medical plans happens much more regularly than changing facilities, so while both choices are important, the facility is probably more important.) 

Hospice can be a real help. The staff I have dealt with have been consistently kind and eager to help. 

There is a gravity to facing death. Having people who are professional and experienced and don't have a lot of prior emotional investment to deal with can be really helpful.

It is true that a lot of the care is focused on the psychological and emotional aspects, like having chaplains on staff who can talk to people about regrets and things. 

There are fewer guidelines to people who are riding it out all the way through the end stages of Alzheimer's.  

That is our current location. 

Movie "Business"

I have one last (probably) story from vacation. 

Maria has a backpack with Disney cats that people really respond to. Sometimes they compliment her, but I have heard people exclaiming about it to each other, without necessarily talking to her. 

Everyone wants to identify all the cats, which is harder than you would think. They come from several different movies, and they are stylized so they don't necessarily look the same.

One little girl did not recognize Figaro, so Maria named him and said he was Minnie's cat.

I heard the little girl's mother say "Pinocchio's cat."

I had that same thought, but I didn't say it. Becoming Minnie's cat has kept Figaro around more. He's a cute kitten so I like that. Of course, she should have adopted Cleo too; they go together.

Also, I try not to be a scold, especially with things that aren't important (though there is a level at which I think everything is important, and that's my issue.) 

I guess the theme of this week is that balance between enjoying yourself and getting bogged down in the problems and details. 

I can be a pain; I worry a lot about being annoying.

I actually don't complain a lot... probably the least among my siblings and I. However, it is very easy for me to notice the flaws in something and dwell on that and how to fix it. I notice that I have much more to say about the disappointing books than the ones I love in my Goodreads reviews. That feels wrong, but comes really naturally to me.

That my thoughts are all about how to make things better would not automatically make them less annoying. 

Diane Keaton died recently, so we wanted to rewatch Baby Boom (1987) -- a movie we had often caught on cable -- in her honor. We did that the Sunday night after we got back.

I have complained about movies to my sisters before, perhaps most noticeably on The Saint (1997). 

While I mostly enjoyed Baby Boom, there was something about it that really annoyed me about it. I never mentioned it, until we were talking afterward, I think about how Elizabeth should be much older by the end.

That is true, but normal compression when you can't control children aging. I mentioned some other movies where we saw that, but then we were talking about being realistic versus being a comedy, and unrealistic things that you have to overlook.  

They asked, and they knew whom they were asking.

That ending does not work. The most likely result of her turning down the Food Chain is that they would develop their own competition which would take over the market and put her out of business, maybe just leaving a local boutique niche. Yes, a small business can grow large under good conditions, but wasn't likely in this case.

She should have asked to have manufacturing happen in Vermont, in a bigger but nearby town where she could work on a schedule that worked for her without relocating, even if that meant a pay cut. The deal was huge; she had some room for negotiation. She also should have asked that her liaison be anyone but Ken (James Spader). That might seem petty, but he had sabotaged her so frequently that it would also simply be practical. If she was happy in Vermont and didn't want to go back to New York, that's great, but I don't think her choice was really all or nothing.

That speech at the end, where she mentions the veterinarian... I know that's supposed to be endearing, but it wasn't a great speech and just made her look goofy; she had her kissing scenes for that! I agree with the movies overall point about work-life balance and giving women options, but that takes smarter planning than she was doing. It's not like they were refuting capitalism.

Of course, the woman who -- demoted in the midst of a crisis -- instead of regrouping and finding a new job, sunk all of her assets into an isolated farmhouse with no experience of country life may not be the best planner.

But it's a comedy and so that's expected. I understand that.

More recently I had similar issues with Isn't It Romantic (2019). I mostly enjoyed it, but the ways they chose for showing how Natalie is put upon in the office and then how she asserts herself do not make sense for anyone who has spent time in an office.

It's almost like Hollywood writers are sometimes unrealistic. 

Especially about non-entertainment jobs. 

Why are you even here?

There were circumstances that made our trip a little harder and sadder, but we were still doing okay, especially compared to some. 

We took a long ride on the Disneyland Railroad on our last day in the park.

This gave us more time that we would have chosen to spend listening to one woman tell her companion all about how Disneyland isn't that great.

Yes, I slip into eavesdropping easily, but they were right behind us and she was not trying to be at all discreet.

I hadn't really been paying attention, but then she started talking about how the food should be the best thing you've ever eaten and it isn't even cooked there.

That caught my interest. More restaurants (Cracker Barrel and Cheesecake Factory come to mind) have not been cooking on site -- only heating -- and it has affected quality. I have also noticed these carts being transported through the park that I believe is food for the restaurants. Given the space in some locations, I can totally believe that there is prep work that happens elsewhere. That doesn't necessarily mean that it is frozen and then shipped in the park, but okay, there may be a point.

I also think the food is pretty good. There will be a post on the travel blog about not chasing holiday menus, but still, even if the giant pretzel was not the best pretzel I have ever eaten, it wasn't bad, and the prime rib with creamy horseradish sauce was delicious!

She said how they have Dole Whip all year round so maybe they take it for granted but if you are from Kansas then it's impressive.  

That just sounded snobby. 

There were two other things that helped fill out my impression. One was that she started talking about EPCOT and how that's what she would find more interesting. Her companion asked about all of the flags, which sounded like a question about the World Showcase (I have never been to DisneyWorld).

The snooty one kind of ignored that question and started talking about the geodesic dome and EPCOT inspired Celebration... that's fine, but that's not what you were asked.

Then, as we were getting into Tomorrowland, the other woman asked what was there. Debbie Downer answered "The Monorail."

Yes, the Monorail is in Tomorrowland, but there is also Star Tours, Space Mountain, Autopia, the Finding Nemo submarine voyage, Buzz Lightyear's Astro Blasters and the Astro Orbiter. Her companion was apparently an older woman so maybe some of those rides seemed like too much for her, but still that is not an impressive answer.

I concede that the Monorail would be the experience most similar to riding the train, but it brought her expertise into question.

The impression that I got was that this is someone who -- by virtue of living nearby -- becomes the Disney guide for friends and family visiting. She does it, but she doesn't really enjoy it so she is overly dismissive of it.

I'd say "Whatever floats your boat," but what a drag for the people she guides. The advice is faulty and then maybe you feel bad and unsophisticated because you thought the pretzel was tasty and were excited to find Dole Whip.

The other part of that, though, is that there is such an attitude of superiority and expertise that is not being backed up. If you must take people to Disney and you want to sound smart, have at least some of the information be helpful in context, not merely about how other things are better. 

At the time it was annoying; in retrospect it was sad.

I have friends who are subject to motion sickness who don't particularly enjoy theme parks. They do other things.

There are also people who go there not for the rides but for the music and displays and to be around happy people. The last time I took my mother, we did not ride many rides but she was still happy and stimulated and I am glad that we went.  

Lady, all around you there are people having a good time. No, they are not having perfect times, and I am sure there are some other people dismissing it like you. For the most part, though, there are people enjoying themselves, maybe even feeling lucky to be there. 

If you tried that, you might even enjoy it. 

Chainsaws

In my review of Universal Studio's Halloween Horror Nights, I mention chainsaws a lot. Some characters had weapons specific to their movies, but the vast majority of the weapons were chainsaws.

(Also, when you were not in any specifically themed haunted house, the main threats -- so the main holders of the chainsaws -- were clowns.)

I was not scared, but I did not particularly enjoy this. That being said, I totally get the value of the chainsaws.

Besides evoking The Texas Chainsaw Massacre, they vibrated. Obviously they were fake and were not going to cut you, but there was real sound and vibration. When one hit my purse, I felt the vibration through that. (Touching things on you appears to be a loophole around not being able to touch you.)

For striking that important balance between real and not real, where people can enjoy suspending disbelief, those chainsaws were probably in the sweet spot.

My sweet spot is analyzing things like that.

Many years ago I wrote about a year where I went through a lot of haunted houses and really enjoyed it. I was wondering why they don't appeal to me now.

I suppose part of the issue is just that it's harder to be scary.

One reason we thought going to Universal for Halloween would be cool is that they were the home of the classic monsters and their movies: Dracula, Frankenstein, The Mummy, The Creature From the Black Lagoon, and even King Kong. For the other side of it, the Munsters' house is still there, though it looks more like a regular house now.

None of that was featured. There is still a 3-D attraction with King Kong, but that stuff is corny and not scary. I get it.

If you ask me about my horror preferences, I may mention that scene where the playground is filling up with crows from The Birds for the growing dread. I am more likely to mention this old cable movie from 1988, Gotham or The Dead Can't Lie. It probably doesn't really count at horror.

It is listed as a "thriller", though I am not sure that is representative. It is a ghost story, just not in the way you expect.

I suppose what I like about it, besides some really beautiful moments, is that the people who are trying to do right end up being okay. Things aren't great for the people who are horrible.

I know happy endings aren't always realistic, but there is this flip side where people will get a kick of how twisted and ugly they can make things. I care about that for reality, and learning more about things to try and fix them, but I don't find it amusing.

I know there are people who love horror films and people who love haunted houses. I am sure there is some overlap between those groups, but I am not in them. 

I finally figured out that when I was enjoying haunted houses, it was because I was figuring them out. This is how they work, this is what would make an ideal group for going... things like that. I even toyed with the idea of designing one, maybe focusing on creepiness instead of fear, because fear can be so difficult to create in these cynical times.

Nonetheless, I got the hang of it, and once that was done it not really being to my taste became more insurmountable. Now it is just kind of annoying, especially because scaring you is their job, so if you don't seem into it they pay more attention to you and...

So another thing that I have tried and don't really care for is interactive theater.  

I do like speed and movement, so once I got over my fear of going upside down on roller coasters, I kept on riding them.  

I still sometimes worry about my glasses flying off. It's never happened, but sometimes I put a hand up to my glasses before the loop, and I think maybe I should just get an eyewear strap. 

I am glad for that year where I went through all the haunted houses; trying new things is valuable. 

Not everything sticks. 

Related posts:

https://sporkful.blogspot.com/2006/10/spooky-spork.html  

Old bag with extra baggage

This was a hard vacation.

I still had a good time and I don't regret going, but it was hard.

Some of that was kind of expected. We were going at a time that would be more crowded and hotter -- not our favorite things -- because we wanted to try something new. Trying out new things is important to me. 

As I wrote about last week, there was also some recent bad news about Mom. That wasn't a big change, but it put a damper on things. 

Also, a really big part of it was that I fell my first day in Disneyland.

It happened really early, too. As usual, we started in Adventureland, going into the Enchanted Tiki Room and riding the Jungle Cruise. Indiana Jones was either down or had a long line -- we thought we'd get back to that later -- but there was still the original Swiss Family Robinson Tree House. It had became the much taller and steeper Tarzan Tree House. Now it was partially restored to the Swiss Family Robinson, but still pretty tall and steep. 

At the highest point, I missed a step and fell down. 

It could have been much worse. I was near a set of stairs and did not go down them or over the railings or... yeah, it could have been worse.

However, I did scrape my elbow and hit my knee and pulled between my neck and shoulder. 

There was some pain around my heel for a while, like maybe I bruised it, but that cleared up pretty quickly. 

I had a lot of muscle ache in my thighs too. They didn't really hit, but I think I was bracing myself tightly to not go down the stairs. I understand the philosophy of relaxing your body when you fall, but I don't seem to be capable of doing it.

That was Monday last week. Currently there is only a little bit of thigh pain, and (on a more graphic note) the scabbing on my elbow is being replaced with red new skin that will eventually turn into regular skin. My knee keeps popping, which is annoying but does not appreciably hold me back.

The neck and shoulder thing is still a problem; soft tissue injuries linger.

While I am on my way to healing now and will survive, it did affect my time in the park. Getting up and down is a big part of riding rides, and I was not doing it so well. I use my thighs a lot for that. Since they were hurting I would normally do some extra bracing with my arm (where touching down the elbow stung) or shoulders (which hurt worse than the sting). 

One thing I had also looked forward to there was trying the Boo-nuelito from La Tiendita in Downtown Disney. We went there, and as I pulled it out of the bag to take a picture, it crumbled onto the ground. 

My sisters paid for most of the trip, but that was one of the things I bought for myself.

I had been having more moments of sadness welling up in me since the phone call about Mom. Now there were more and they were mixed with some physical pain and even more emotional pain about being stupid and clumsy and not able to do very simple things right.

I did not at any point actually burst into tears, but it was an option. I did have a judgmental old white man looking at me in the tree house, I think debating about whether he would have to help pick up the fat clod. There were lots of people passing by and looking at the Boo-nuelito. Really? You've never seen someone drop food before?

I'm just saying the trip had some lows.

There are things that won't be replicated. We aren't likely to go at such a hot and crowded time again. I'd like to think that I won't fall again, but I will only get older, and probably more tired.

I can hope that there won't be another trip where I start out that sad, but there is going to be more sadness accumulated, even if there is also more cumulative joy and the sadness won't always be that fresh.

That gave me a few thoughts.

I am glad for all of the other trips. I am grateful that I have been to Disneyland on trips where I rode every single ride and for that one time where I rode the Matterhorn three times in a row and it was easy to do it.

Even though there was sadness and frustration with it, I am glad for that trip with Mom a few years ago where she could still enjoy some of it. I'm glad for that trip in 1996 that we needed so badly. 

Disneyland is pretty great on its own, but we have an emotional attachment to it built around lots of memories. 

I am grateful that as beat up as I was this time around, I did get to go on both of the new rides. Anything I missed this trip, I have done before and I hope will do again.

I am grateful that my sisters do bring me along, even though I don't have much to contribute financially right now. 

It makes me sad how there is a prevailing thought, especially for poorer people, to put all of that off for retirement. Even assuming that they actually do have some savings and are still alive at that point -- which is not guaranteed -- they will not have the energy and strength of youth. 

I mean, I have hated economic inequality for a long time, but the things that we keep feel comfortable telling people that they have to do, when the only reason it's that way is so some people have more than they could possibly even use... that's just sick. 

Doing that for food and health care and education is wrong, but you know, vacations are important too. 

We all need downtime and happy memories sometimes, even with their imperfections.