It’s such an odd thing when you’re speaking with your mother, when out of the blue she asks, “How’s your mom and dad?” Huh? Did I miss something? “Ummm. They’re doing well, I guess?” you respond. Have you had this experience before? It is a mind-blower. One day your parent is totally coherent and capable, and then the next thing you know, they no longer make sense and stop doing nearly everything they did in the past. This has been the main focus of my year thus far, dealing with a parent that seems to have ‘lost their mind’ in a relatively short amount of time.
It started out with little things, things that up to a point, only I seemed to notice. My husband and I had her out for a visit for just under a week. She seemed pretty ‘with it’ for the most part, but I started to see that she was having trouble doing the things that were so easy for her in the past. One night, I dug the Scrabble game out of the closet and set it up for us to play. It was one of our ‘go-to’ games. We both are word nerds. But it was a strange affair, to be sure! She had always been so sharp, but now I was finding myself growing VERY impatient when it would take her 20 minutes to come up with a 2 letter word. And then it wouldn’t even be an actual word. I thought she was pulling my leg but after a while, I started to realize that she really was having a difficult time. She kept apologizing and telling me I’d probably never play that game with her again. “Yes, I will!” I assured her, but in my mind I was thinking, “No, I probably won’t. I don’t have the patience for this.” There were also some other things that I found unusual. She stopped doing crosswords which was something she had done every single day FOR YEARS. And during one of our conversations, she started talking about ‘the lady at the office’. I was perplexed because she retired over 26 years ago, so I thought maybe I was hearing things. “The lady at the office?” I asked. “Yes, she’s going bald!” was her response. Ok, I’m just going to brush right past that because I don’t even know what to say. Then, within a matter of minutes, she started talking ABOUT me TO me. Ok, that clinched it! There is no longer any doubt. It’s not my hearing that’s impaired, my mother is actually not in her right mind.
The odd thing about dementia is how it can slowly creep up on somebody and then suddenly accelerate and change their life in a matter of months, as it did with my mother. The person that I visit with today (versus a year ago) has no concept of time or the value of money. She doesn’t know who her own children are or even how many she had during her lifetime. The other day she told me she had twelve (there are 9 of us). What is so incredibly sad about all of this, is that my mom was insistent that she wanted to stay in her home until she met her maker. And that was my hope along with my siblings. But when circumstances change, and your parent no longer cooks or cleans or bathes, and tries to burn the house down a time or two, something has to be done. That’s when things get really fun (I am saying that with just a hint of sarcasm, in case you weren’t aware)!
The ‘beauty’ of dementia is how it can singlehandedly divide a family with very little effort. And when your family is already fractured, it doesn’t take much at all. What resulted when everyone became aware of how much my mom had been impacted and that living alone was no longer an option was quite interesting indeed! Pretty much 50% of the siblings said she should stay in her home and get a caregiver and 50% said she should move to a care facility that can better address her needs (especially as she declines). I was open to either, but the issue was, that the person who INSISTED on being her caregiver happened to be my sister who also happens to be one of the ‘bad eggs’ I mentioned a while back. This sister has manipulated my mom, siphoned thousands and thousands of dollars off of her, verbally abused her and has also made it clear that she wanted her house (for nothing). Ok, sorry, that’s not going to work for me! I don’t care about the money because, honestly, it wasn’t mine to begin with. I didn’t earn it. And there’ll likely be nothing left to divvy up when it’s all said and done anyway. But what I do care about is putting someone ‘in charge’ of my mom that is not a healthy individual in any way, shape or form. And have I mentioned yet that my mom has MULTIPLE TIMES over the years said that she SPECIFICALLY DOES NOT WANT THIS PARTICULAR PERSON TO BE HER CAREGIVER?
This is where things become really interesting! Because my mother now has pretty advanced dementia, she has completely forgotten about the history between her and my sister. For at least 10 years, prior to the onset of dementia, she made it crystal clear that she did NOT want this person to be her caregiver. She told numerous people, she journaled it, and she even drew up a letter and had it notarized. She knows how my sister is. She knows she bullies and intimidates people and will stop at practically nothing to get her way. But today? If you ask my mom about my sister, she tells you what a nice person and how interesting she is. Oh my gosh, I think I’m going to barf. It’s as if someone took a great big eraser and eliminated all of those memories. And oddly enough, not only have memories been erased, but the past has been reinvented in many aspects. Sometimes she only has 2 kids and sometimes she has 12. She also believes that she raised one of my brother’s children, and that’s why she knows him so well. Didn’t happen. Oh! And she’s never met my dog or been to my house before. Stop right there! I have a picture!! “Hang on, Mom,” I say as I pull out my phone. After locating the picture in my ‘gallery’, I hand it over to her. She looks at it with a puzzled expression. It’s a photo of her with my dog in my house. “When was this taken?” she asks. “February,” I reply. By the look on her face, I don’t think she’s convinced. She just sort of smiles and tells me what a sweet looking dog I have. Sigh.
My point today? Not really sure. I just felt like sharing with you some of the crap I’ve been dealing with lately. I don’t know that I’ve ever been as stressed about anything to this degree before. I thought the whole process of finding a kidney donor and getting a transplant and everything related to that was pretty stressful, but this far outweighs that! And the sad thing is, I don’t have it anywhere near as bad as my brother (Clover) does, who happens to be her P.O.A. and executor of her estate. He’s been in the ring and getting most of the blows dealt by some of my siblings (so you can imagine what he’s going through). I guess all I can really say, is that if you’re someone dealing with a similar situation, I totally understand what you’re going through. So often, life just isn’t fair. But don’t give up hope. You are stronger than you know and there are a lot of resources out there for folks dealing with this very topic, so use them! Use your spouse or partner, SUPPORTIVE siblings, friends, neighbors and/or counselors. Use anyone you can get your hands on! There are even support groups in most communities.
Just don’t go it alone, ok? If you do, you will likely crack. And we’ve already got enough humans running around in that condition on the planet as it is. Just hang on, it’s going to be a bumpy ride. Eventually you’ll get off the roller coaster, a bit shaken up but still intact. The fact is, it’s not going to be easy and some days will be harder than others. But you are going to get through this. I believe in you.