Emotional Roller Coaster

The past six months have put me on the biggest emotional roller coaster I have ever been on. I knew care giving for someone with Alzheimer’s (my mother) would have its ups and downs, but I never realized it would bring so many tears and laughs all at the same time. The tears from watching her decline, and the laughs from those who support me and help cheer me up.

Watching the decline with my mother has been so very tough, and sadly, we’ve been fighting to stabilize her moods and behavior since this past March. It began almost all of a sudden when she started having separation anxiety, from me, (which I’ve slowly learned that I am her “security blanket”). Unfortunately, I work a full-time job and can’t be with her 24/7. But she had a hard time comprehending this, and would cry every day while I was at work. And then grab me and hug me every day when I walked through that door, crying some more, “thank God you’re here and you’re safe!” For some reason, she would relate me not being there to me being dead. Definitely a gruesome thought, and it actually freaked me out in the beginning, knowing that she thought I was dead, but eventually it saddened me to think how awful she must feel inside thinking her only child is dead. So, I embraced her daily hugs and crying, assuring her that I was here and I wasn’t dead, but I knew that she couldn’t go on feeling like this every day. How miserable of a life is that?!?!

I contacted mom’s neurologist in hopes for a solution to her constant crying and delusional thoughts of me being dead. He immediately started her on an antidepressant. Thank goodness, within a couple of weeks we were finally seeing some relief! I couldn’t have been happier… UNTIL, about a month after, the side effects of the new medication began to kick in. Embarrassingly, the side effect was diarrhea. Sadly, due to previous and frequent stomach issues with mom, we didn’t think of the medication as a possible cause. And in any other circumstance, I probably wouldn’t have mentioned this side effect, but it became so bad that the drop in her potassium due to the diarrhea landed her in the hospital. If you’ve ever dealt with Alzheimer’s Disease you may know that a hospital stay can be, and was, so very traumatic for mom. It definitely sent her decline into the disease even further. She never bounced back and definitely hasn’t been the same since that hospital stay.

After figuring out it was the medication that caused mom serious issues, she was immediately taken off of it, and within days, the diarrhea stopped. But soon after, the daily crying and thoughts of her only child being dead began to resurface. So, another new antidepressant was introduced to her, and within days, the diarrhea became an issue again. Stop medication number two! Crying and gruesome thoughts begin again, start new medication number three. Diarrhea begins. Stop medication number three! It was a vicious cycle that we battled for months, until we all came to the conclusion that mom’s body was not going to tolerate any SSRI antidepressants. So, this time we step outside of that box and try a fourth medication, a non SSRI, and instead, a tetracyclic antidepressant. Hallelujah!!! We finally found one that didn’t cause diarrhea! Things will finally stabilize and hopefully make mom more manageable now… WRONG!!! Though, diarrhea was not an issue at all with the medication, we were now seeing daily delusional thoughts and hallucinations with mom.

My support team (those that have been there for me through these trials and tribulations) is actually who helped to bring some laughs in the mix of it all, (but there were also many days of crying). Though it’s sad to know that mom had these awful thoughts, but some of the stories, we couldn’t help but laugh at. The Mafia was in her house and they were out to get her! And sadly, our neighbor/friend/nurse who helps care give for mom every week, was a part of that Mafia, and her husband too! The friends that live with mom, who also help care give for her – he was cheating on his wife, and he paid me off so that I wouldn’t tell his wife. Then, there were nights at 2 and 3 a.m. that someone broke in her house and I had to go over there and make them leave. HA! Me, get a burglar out??? She obviously doesn’t know that I’d be the one hiding in a closet somewhere. But, to her knowledge, I got them out and saved the day! Those incidences consisted of me then staying the rest of the night there with her, after I got the burglar out, and sleeping in bed with her (like a toddler who had a bad dream) in order for her to fall back asleep. Then waking up at 6 a.m. and slowly sneaking out of her bed so not to wake her, so that I could go home and get ready for work. Those were just a few of the many, many, delusions and hallucinations. But, between the Mafia and the cheating husband, mom disliked and became scared of those who were there to help her on a regular basis. And sadly, she began refusing meals from them too, resulting in unintentional weight loss. Eventually she became mean with these people, and soon after, with me too. She was verbally mean, attitudinal, and even got physically violent. Chalking this up to the fact that it had to be the new medication, we stopped it immediately. And within two days, all of the delusions and hallucinations stopped. Thank goodness!

Of course, the crying, the separation anxiety, and the thoughts of my death worked their way back into mom’s head. But I’m happy to say that we have FINALLY found a medication that is working in all aspects. She’s calm, okay, not totally calm, she still has a lot of anxiety, but she’s pleasant, she’s not having diarrhea, or delusions, or hallucinations, and she likes everyone again. Though she still needs 24 hour care, mom is definitely more manageable than she has been physically and emotionally for the past six months. So right now, I’m on the higher end of this emotional roller coaster, and it would be grand if we could just stay right here for a while!

One Day at a Time

“Ya know, there are two EJ’s living in the house now, and I just can’t seem to keep them straight anymore,” were the words spoken by my mom just last week. Five years ago I would have looked at her like she had three heads had she said that, but considering we are this far into Alzheimer’s, I suppose it’s something I would expect her to say these days. And, “Yvonne, she got upset today and left to go home,” mom also told me in the same conversation . . . very odd, since Yvonne lives with mom. And then, there’s the repeated question I get a lot from mom now, “where am I,” when she’s in her bedroom, or the shower, or her bathroom, or even the living room, where she spends the good part of her day. It seems that not much of what mom says anymore makes sense. It’s so tough these days, tough to hold a conversation with her, tough for her to express a simple thought in her head, tough for her to find the right words in any sentence she’s speaking. I used to be able to figure out what she was trying to say and fill in the blanks to help her along. But now, now she either says things that are completely off the wall, or she can’t find a single word to provide any sort of clue of what she’s trying to say, and therefore, makes it extremely difficult to try and help her along. Though I stated that I almost expect mom to say some off the wall things these days, it still catches me off guard every single time, and it makes me think, where in the world did she come up with that, and is there any bit of truth to what she’s saying? And then, the things she says, they run through my mind over and over, for hours and hours, sometimes even days, until I sink myself into a bit of depression, once again realizing the sadness of this disease, and watching my mom slowly digress.

Yesterday, mom was very afraid. She explained that she has repeatedly seen something pass her by in the middle of the night in her bedroom. And this past time, two nights ago, it scared her enough that she felt the need to crouch down next to her bed to try and get away from it. She proceeded to tell me that she eventually realized she was hiding next to her bed and thought to herself, what am I doing down here, am I going crazy? She also didn’t feel the need to tell anyone about this thing that is passing by her and scaring her, until yesterday, as she pleaded for help. “Can Dr. Lerner do something to make this stop? I just feel like I’m going crazy, and I’m scared.” Good God, how this breaks my heart, to hear how scared she is. It puts this pit in my stomach that constantly makes me want to cry, thinking of how this disease is affecting her mind and how these hallucinations are causing such fear in her. Why, oh why can’t there be a cure for Alzheimer’s?!?!

In the meantime, the doctor has prescribed mom a new medication for the hallucinations. But, in the world of Alzheimer’s, this is only a temporary solution to the problem. Sadly, there is no permanent solution, and this will only get worse. And so…we will just take one day at a time.