Sunday, January 01, 2012

Adventures In Dementia

I've mentioned before that my mom has dementia. This is particularly challenging because Mom does not recognize how serious her dementia can be. Some days she is mostly fine. Yes, she repeats the same questions over and over or can't recall the name of something or forgets to pay a bill or an appointment, but she's mostly coherent and able to do her daily activities with the same independence she's always had.

Other days, however, are more challenging. Dementia robs a person of their awareness and their judgment. It causes them to not only forget things, but misremember things that have already occurred. There's little use arguing or trying to rationalize with a person with dementia, particularly on a bad day. Their reality is the absolute truth as far as they are concerned, even if everyone else around them recognizes that its not. Dementia sometimes causes paranoia or mood swings or strangely obsessive behavior. It is hard to adapt to.

As the child who most often lives with my mom during my times when I am working in Utah, I am, therefore, someone who spends a lot of time with her and sees first-hand what she's like, both on good days and bad ones. It is exhausting to be asked the same question over and over or be told the same information in the same way again and again. This is not Mom's fault. There is nothing willful about her behavior. It's just the way her brain works now. It has taken me a while to adapt. Initially, my first instinct was to say, "Mom, I just told you that" or "Mom, don't you remember?" As Mom progressively gets worse, and as I read more and more about the disease, I have been taught that it's just better to treat each repetition as new information. As a somewhat impatient person, this was hard to do at first, and some days I am still not good at it. Sometimes you just want to scream, "I told you that literally three seconds ago! How can you not remember?!" And yet, she, in fact, doesn't.

Dementia has been such a fascinating disease to watch. Sad, but fascinating. It boggles my mind that a person can remember some minute detail from their childhood with total clarity, but literally cannot remember something you just told them. I remember having a conversation with my mom about her childhood, and she was so articulate and so coherent. You would never know she had memory issues. Yet, the closer we got to the present, the more it slipped away.

It's fascinating to watch Mom forget the names of people she has known for some time. For example, she consistently forgets my brother-in-law's name. She knows who she's talking about, but can't seem to find his name. A few weeks ago she was looking at a picture of my niece and nephew when they were younger and couldn't identify them. She did the same thing once with an old photo of my sister. It's so interesting.

My mom used to be an ace at Trivial Pursuit: The Silver Screen Edition. We used to play a lot when I was younger. There's no way we could play a successful game today. She simply cannot retrieve the information.

Mom can watch a movie and recite the plot for you, but then will rewatch the same movie a week later and not remember having seen it at all even if it's a movie she's seen many times.

Places that were once easy and familiar for Mom to get to are now mysteries to her. She once spent over an hour trying to find the nearby mechanic she's taken her car to for years, a trip that barely takes 5 or 6 minutes, to no avail. She even had directions.

Part of what gives me the most stress is how much I worry about Mom. I love her very much and even though she isn't a child, sometimes it's like caring for a child. What makes it really tough is that from Mom's point-of-view, everything's perfectly fine. As far as she's concerned, she's completely healthy and there is no reason to worry about her. Unfortunately, there is. Adding to that, Mom is fiercely independent and can be incredibly stubborn at times.

I have a problem delegating responsibility, too. I've always had this attitude that if I don't do it myself, it either won't get done or won't get done right. This isn't true, but unfortunately, it's how I often operate. And as such, a lot of the burden is put on me, and that is probably my own fault.

My siblings are great, and they help out Mom a lot, but it is true that Mom has become highly dependent on me, and when I come back home to Jonah, she tends to get depressed and forgets that she has other children that are there to help her out.

Until very recently, I was the one that really knew Mom's financial situation, her spending habits, what medications she takes, was taking her to doctor's visits or helping her around the house. My siblings, of course, had an overview of this stuff, but I was the one who was truly dealing with it day-to-day. Again, probably no one's fault but my own.

Keeping on top of Mom, making sure she's making all of her appointments, taking her medications in the right doses at the right times, making sure she's paying her bills, protecting her from salespeople and other entities that might take advantage of her, having the same conversations over and over, canceling unused credit cards and unused gym memberships, worrying about her when she does something out of the ordinary, etc. can get a little wearing at times. I'm ashamed to say that sometimes I would retreat to my room just to take a break from her. That sounds awful, although according to the literature I've read on dementia, is perfectly normal and sometimes needed.

Knowing that I would be moving back home for a while (my next job in Utah isn't until April) and because we're all generally worried about her, my siblings and I got together to discuss some practical measures we can take to best help Mom. Much of her day-to-day care in in the hands of my siblings now. Part of me feels relief and part of me wishes I could be there to help out more. I do have a husband, though, and he deserves to have me here with him, and I need to be with him.

On Saturday I spoke with my Mom at 5:45 PM. She said my brother and sister-in-law had invited her over for dinner and that my nephew would probably be picking her up. She said she had to get ready, and I told her to have a nice time. So you can imagine my dismay and shock when my brother called at about 8:30 PM informing me that Mom was missing. In turned out that Mom's dinner with them was supposed to be Sunday night, so my brother didn't even known that she had attempted to go to their house on Saturday night. All he knew was that when my niece and nephew (who live in my mom's house) came home, they found Mom's car missing, which is very unusual for a woman who's usually in bed by 9:00 PM and doesn't drive at night.

We had no idea where she was. The last time we had gone to my brother's house together, she seemed confused on how to get there, so I had advised my brother and sister-in-law to not let her drive there alone. Had they realized she had mixed up the dates on when dinner was, I'm sure they would have picked her up. But the thing about dementia is that she could have headed anywhere, possibly even someplace nowhere near my brother's house.

My mom doesn't have a great sense of direction anyway, dementia or not. If her sense tells her she should go left, it is 99% likely she ought to go right. She also doesn't drive well at night, and actually we have been worried about her driving at all, so my fear was compounded not only by the fact that she was missing, but that if she felt she were lost, she might get distracted and hit somebody or get into accident.

Mom was missing for 5 1/2 hours. My family members were all out looking for her, made worse by the fact that they weren't even sure where they should look. Hospitals were called. her cellphone, which she didn't think of turning on, was called many, many times. The police had an APB out on her, and finally at about 11:15 PM, a time when my mom is rarely, if ever, out, the police found her and pulled her over. She was 12 miles from her original destination going the opposite direction in an area of town she never frequents. The police took away her keys and my brother came to pick her up.

Mom did not know or feel that she was lost. In her words, she was just "out for a drive." This coming from a woman who doesn't realize she was out for nearly six hours, thought it was daytime when she was driving, doesn't think she was found where she was found, doesn't remember getting pulled over, and was confused about who's car she was in when my brother was driving home. She was mad at us for worrying about her, said she could drive any time she wanted to (never mind that she never drives at night and actually dislikes doing so) and doesn't believe the events happened the way they really did.

We have no idea what she was doing all that time. She says she remembered that the dinner was for the next night (not true - she did not learn this until my brother told her when he picked her up after the police found her) and decided to take a drive instead. She said she stopped to look at some Christmas lights (probably true) and also went to a "forest" (none of us know what she is referring to), and she mentioned something about a "dungeon." Again, no idea.

All I know was that my mom was missing for five and a half hours and that we were worried sick about her. I don't know if you can truly imagine that feeling unless you've had somebody you know go missing. It sucks. It makes you feel incredibly helpless. Moreso, when you're in another state and can't do anything to actively help. I'm just grateful she was found unharmed and that she was found so quickly (relatively).

This is not the first time Mom has gotten lost. Last summer she took a walk on a very hot day. Normally her walks are 45 minutes. She was gone for three hours and ended up three miles away going north (away from her house) when she thought she was going south. Fortunately, a nice couple saw her and were concerned about her and drove her home.

Mom is supposed to take her driving test this week to evaluate her driving ability. Mom is very confident that she will pass and be able to continue driving, but the rest of us are fairly certain she will fail, which is a good thing. We have been talking about taking away her keys and we try to drive her place as often as possible because, although she does not recognize it, her awareness is not as sharp as it once was, and she gets confused more, and I think that makes for a dangerous driver.

There is a lot of construction near Mom's house, and she has been nervous to drive in that area, so she walked to the store the other day to avoid driving, and realized when she got there that she couldn't carry the stuff she had, so she stole (borrowed) a shopping cart.

Mom also has been giving quite a bit to charity lately (more than usual). Mom has a very generous heart, but she is on a fixed income and I worry about her overspending to donate to charity. I also worry about salespeople suckering her into buying things she doesn't need. The other day she got her garbage disposal repaired when no one else was home and spent far more than I think she needed to. I think we could have got her a better deal elsewhere.

Mom has also stopped using her debit card (probably because the difficulty the technology presents for her) and has started withdrawing large amounts of cash from her account, which makes it harder to monitor what she is doing with it. My brother and I have power-of-attorney over her, and if it starts to get out of hand, we may have to step in and take action.

Mom has also been lax about taking her medications, which I think may have contributed to Saturday night's episode.

Anyway, things will only get worse. That's the nature of dementia. It's hard to watch a very independent, level-headed person lose their judgment and independence. Mom also gets agitated or upset about trivial things whereas she used to be pretty meek. She still is, but I've seen her get really agitated about things that she blames on others (such as we never tell her what's going on or that we're making things up or that people have done things that they really haven't - all due to her inability to remember things). It's hard to watch, but it is what it is. I wish I could do more from where I'm at, but it's harder now...although in some ways it makes it easier.

As a child who was raised by a very loving and responsible mother (and father), I feel I have to give back. It's funny how the cycle of life works. Parents take care of their kids, and then kids end up basically doing the same thing to their parents. I think that's the way God intended it. That doesn't make it easy. But then, parenting a child is never easy, so why should I expect that caring for a parent would be any easier. I also find one of the best coping techniques for me, personally, is to have a sense of humor about it.

I hope I'm doing enough. I just want her to be safe and taken care of and protected.


Duck said...

You are dealing with a lot. It is so hard seeing one's parent(s) getting older and slipping into dementia and other behaviors that cause great worry and concern.

My parents are falling into the same behaviors you listed here in your post. That is why I am so appreciative that you took the time to write in detail what is and has been happening. It helps me know what to watch for.

I worry about my father especially with his driving. He is downright scary and I, if possible, will never ride with him again when he is driving. I am hopeful he will not pass his next driving test, either. I know I will then be called on to drive him places, but I am good with that. I would rather drive him and know that he, and other passengers are safe, then have him out and about driving so erratically. He so defines himself on what jobs he can do every day and to where he can drive himself. This is very hard for him. It is hard to me, also, to see a man who has been so vibrant and active his whole life suddenly emerging into a child in many things he does.

Thank you, again, for your post. I will keep you and your mom in my thoughts and prayers just as I will keep my parents in my thoughts and prayers.

Happy New Year to you and yours.

Love and respect, always. Duck

Duck said...

P.S. I am glad you are able to spend time with Jonah. It is important to be with someone you love- and it gives you a chance to recharge as you deal with life's complexities.

Gay LDS Actor said...

Thanks for your comments, Duck. I appreciate them.

As for your father's driving, there may actually be something you can do if you are truly concerned about his driving but don't want to be the "bad guy" and confront him about his driving privileges. I don't know where you are located, but in Utah, at least, I believe one can request the DMV to have a senior driver re-evaluated. As far as I know, it can be done anonymously and, after review, the Driver's License division will determine if a person needs to be retested. If they pass, no loss. But if they fail, that's one less unsafe driver on the road, and the driver can blame the DMV rather than a family member for the loss of their license. There may be a similar program where you are.

Thanks for keeping my mom in your thoughts and prayers. I will do the same for you and your parents.

I totally agree with you about my time with Jonah.

James said...

Your story sounds exactly like what my aunt has been going through for at least the past 10 with my great-aunt (who is now 91). It's really sad, and it obviously runs in our family. I have this great-aunt, and a great-uncle who are suffering from dementia, and I swear my 64 year old mother is starting to lose it too. Don't feel guilty about taking a break, you need it for your sanity.

Gay LDS Actor said...

Thanks, James. I needed to hear that.

Duck said...

Thank you for the information about DMV and my father's driving. That is VERY good to know- and, yes, I live in Utah.

Hope all is going well for you. Happy New Year to you and Jonah.

love and respect, always.

Gay LDS Actor said...

You're entirely welcome. Happy New Year to you as well.

mkreuzenstein said...

I would like permission to use your picture from this blog post in a powerpoint presentation on the fear of dementia. The picture of interest is the second one used, of the hands.
Thank you,

Gay LDS Actor said...


I actually got that photo from this website: They would be the ones to ask.