9 – Mom and Me Update

Dad,

This letter is going to be longer than the previous ones and probably pretty upsetting for you, but I hope you will read it all the way to the end.

In the last years before your dementia took hold, you sometimes expressed your feelings of hopelessness about Mom and me. You didn’t see how we could ever repair our relationship and get close again. But ironically, it was your dementia that started to change things between Mom and me. She felt very alone and didn’t know what to do. I started to call her more often and tried to give her an outlet for her fear and anger and frustration.

After you passed away, I worried about Mom and started to call her every week. She missed you terribly and was living alone for the first time in her life. She was completely worn out from the years when she took care of you. And then her health took a frightening turn. She started to have bizarre high blood pressure spikes and had to call EMTs to rush her to the ER once or even twice a month. Mom insisted that the spikes were the result of exposures to allergens. But her primary care doctor and the ER doctors all felt that she had hypertension and just needed to take blood pressure medication. She tried this, but it didn’t stop the spikes. Still, none of her doctors seemed interested in trying to figure out what was really going on. 

I doubted all along that the blood pressure spikes were caused by allergens, and eventually Heather and Tricia [my sisters] began to agree with me. The spikes were too random – sometimes there was an obvious exposure and no spike – sometimes there was a spike and no obvious exposure. It became more and more clear to us that Mom would die if she didn’t receive better medical care and stop living alone. We knew a day would come when she would not manage to call the EMTs in time. We pushed her to find a better primary care doctor, but she refused. We pushed her to either find a senior living place or move in with Heather, but she refused.

Finally, we forced the issue. We did a lot of research and presented Mom with what we thought were her best options. We insisted that she make a choice. She was furious with us, but I think on some level she knew we were right. She decided to move back to Massachusetts and live with Tricia. 

It didn’t take long for her new doctors in MA to discover what was causing the blood pressure spikes – she has a blocked artery in one of her kidneys. After some trial and error, they have found the right combination of medications to control the spikes. This has been a huge improvement in Mom’s quality of life.

Tricia was worried about Mom’s allergy to fragrances, so before Mom moved up north, Tricia cleaned her whole house with unscented products and bought everyone in the household new, unscented soap, shampoo, deodorant, everything. She put all of the scented stuff in boxes down in the basement. But then one day, after Mom had been living there for a while, she saw Tricia washing her kitchen floor with a mop and asked why she wasn’t using Swiffers. Tricia was surprised – those things have a strong fragrance. But Mom said she had used them for years. So Tricia got her Swiffers out of the basement. Then she got curious, and started wearing scented deodorant again. Mom didn’t say anything and nothing happened. No allergic reaction. Now everyone in the house is back to using scented products and absolutely nothing has happened. It appears that Mom is no longer allergic to fragrances. Maybe she never was.

As soon as she moved in with Tricia (long before Tricia’s household went back to using scented products), Mom started to behave the same way she did years ago – swinging back and forth between times when she was hostile and aggressive, picked fights with people, and said nasty, hurtful things, and other times when she was self-critical and weepy and threatened to kill herself. Tricia’s two adult children who have bipolar disease are currently living at home with her. After Mom had been there for a while, they came to Tricia and told her they believe Mom also has bipolar disease. They have a sort of sixth sense about people who belong to their “tribe,” the same way many alcoholics will claim they can always recognize another alcoholic. When the kids first mentioned this to Tricia, she didn’t believe it. But the more she thought about it, the more she realized that it explained a lot of Mom’s behavior.

It’s hard to know what this might mean about what was going on with Mom decades ago. Maybe I was right all along – maybe Mom had a mental illness in addition to multiple chemical sensitivities. Or maybe she never had MCS at all. Tricia and her kids think Mom’s allergic reactions may actually be panic attacks caused by anxiety and she isn’t really allergic to anything. Heather and I are inclined to agree.

I imagine you’re not happy to hear that Heather and Tricia have joined me in rejecting the MCS diagnosis and thinking it’s likely that Mom does have some kind of mental illness. But even if we’re right, I certainly don’t feel victorious. Because it’s too late. There’s no way Mom, now in her eighties, would be willing to see a psychiatrist in order to be diagnosed. And all of us kids are grown up and middle-aged. Our childhoods cannot be salvaged. The damage has been done.

Having Mom live with Tricia didn’t work out very well. Not only did Mom’s behavior alienate everyone in the family, but also the house was just too crowded. So recently, we moved Mom to an assisted living facility. She was very upset about the move at first, but she later admitted that she was just scared of making such a big change. Now that she’s settled there, she keeps telling us how happy she is – she loves her room and the food and the various activities she’s involved in. She feels safe and she sleeps soundly. She’s walking a lot more and has even started going to the daily exercise classes, which are helping her regain some of the function in her arms. She has not had a single allergic reaction. She now says that she knows we saved her life by getting her out of Florida. 

Even though Mom is doing well, I still call her every week. She remains pretty self-absorbed. She rarely asks me about my life, and if I try to tell her about one of my activities, or about something going on with Benson or one of the kids, she brings the conversation back around to herself as quickly as she can. If I’m having back pain and try to tell her about it, she immediately changes the subject to her own aches and pains. But at least she now speaks freely about her own life and we often spend time sharing memories from our respective childhoods. I think she has begun to have her own doubts about MCS, but she only hints at this. I don’t push her too hard. It doesn’t matter any more. To me, the important thing is that she and I have developed a new closeness. It’s not like the one we had before her illness began, but still, a closeness that we both value and that seems to have closed the wound somewhat. 

You once referred to Mom’s illness as a deep and scary chasm that I would have to find the courage to step over because Mom couldn’t. It was never clear to me why you believed that I had to be brave, but Mom didn’t. But I think you were exactly right in this description. I think what I had always thought of as walls were really the sides of the holes Mom and I fell into back when I was in college. I hope you will be pleased to hear that I have climbed out of my hole, that I have found the courage to step over the chasm, and that I have closed some of the distance between Mom and me.

Karen