Saturday, October 06, 2012
Firestorm In My Family
So those of you who read my blog regularly know that I have been caring off and on (mostly on) for my mom who suffers from dementia for about the past four years. In the past year or so she's really gotten bad, so it gets more challenging as we go along.
During this time, I have been the primary caregiver, and I seem to be the one my mom has grown most dependent on and who she seems to turn to first. I have often put caring for my mom as well as pursuing my career above Jonah's needs, and I have finally reached a point where I can no longer do that. It isn't fair to either Jonah or me, and I've reached a point where I feel I have to put him first now.
As I have made my preparations to go back home and leave my mom in the hands of my siblings, this has created a lot of stress, angst, and turmoil for me even though I know it's the right thing to do. Anyone who reads this blog regularly knows how much I love my mother, and leaving her for who-knows-how-long is one of the most difficult things I've had to do.
The older I'm getting, the more I realize I am missing precious time with Jonah, and we both feel we need to be together. And truth be told, the emotional exhaustion that has resulted from caring for my mom is taking it's toll on me. It is very stressful, draining, and hard at times.
Shortly after I made the decision to move back home after my current show ends in November, my niece and nephew, who have been living in my mom's house as well and have been taking some of the slack in caring for her, announced that they were considering moving out as well in December. No one else in the family currently seems in a position to take on Mom's care. No one's house is big enough for her to move in with them, and no one is in a position where they can move in with her.
We will be having a meeting a week from today to see what needs to happen next. A few days ago, my niece wrote an email expressing her thoughts on the situation. She said that either she and my nephew would move out in December and we would have to figure something else out or that they would stay until June possibly, but with the stipulation that we pay my nephew $500 a month to care for my mom because he will have to quit his job in order to continue to care for her.
In retrospect that demand doesn't seem unreasonable. After all, they would be losing a source of income, and in order to be home to concentrate on Mom, he feels that's what he would have to do. And $500 a month is a heck of a lot less than what we would have to pay an outside caregiver, I'm sure.
However, at the time my niece wrote the email, it rubbed me the wrong way. When she and my nephew got married and moved in, we agreed that they would live here rent-free and utility-free, and in exchange they would do the cleaning and yard work, which they have done diligently.
During the year they have lived here, I have been here 8 of the the 12 months. I handle Mom's finances; run her on errands (as do my niece and nephew and my other siblings); get her prescriptions filled; take her shopping; I take her to the doctor; make sure she is taking the proper doses of her medication; make sure her blood sugar is at appropriate levels; try to make sure she is eating healthy; I throw away her junk mail and make sure she isn't falling victim to scams; I play games with her and socialize with her to keep her mind active and to keep her entertained; I take her out to plays and movies; I go on walks with her; I drive around looking for her when she gets lost; I listen to the same questions and stories day after day and watch her slowly disappear; and hardest of all, I sacrifice being with my husband to do it all.
Before my niece and nephew moved in, I did all of that and did the yard work and some of the cleaning as well. Now, my niece and nephew (and my siblings and their families) do a lot, and if they didn't do what they do, I would probably have gone crazy a long time ago. I appreciate everything they do, and it helps take a lot of the burden off of me.
But for a while, as my mom began her progress into dementia, there were times when I felt like the burden was mine alone. Perhaps that is not a fair perception. And because my mom has relied on me the most (which I don't think any of my siblings would argue with), it often felt like I was the one everyone turned to when there was a problem with Mom. And when I was home in Vegas, Mom most often seemed to call me when she had a problem even though there were three other children right here in Utah to take care of her. So fair or not, I have often felt the challenges that come with caring for Mom often fell to me.
Leaving Mom is always difficult. She gets very pouty when I go back home to Jonah, and my siblings have all attested that she seems more depressed when I am away. So it has made me feel guilty every time I leave her, which is part of what has always made me come back. It's not that she's making me feel guilty on purpose; it's just she has become very dependent on me, and perhaps there is this false notion that no one can take care of her as well as I can.
Just yesterday I reminded Mom that I am leaving in four weeks, and she got sad. I said, "But hey, your other children will be here to help you," and she said, "Who?" I said my sisters' names and my brother's name, and Mom said "[Your brother] never visits me," which is not exactly true, but of the four of us, he is the one who visits her the least, so I couldn't really argue with her, but I mentioned again my two sisters and my sister-in-law (who does visit Mom regularly), and that seemed to placate her.
I think it's easier for my siblings when I am here. The load is lighter when we are all sharing it. And the last time I was gone for an extended period of time, my sister-in-law came up with a plan where each sibling would visit Mom at least once a week (sometimes twice) on a specific day (or days), and that plan has turned out to be a good one (although it does put stress on everybody, but at least it gives me a break at times).
Anyway, back to my niece's email. As she was laying out what she and my nephew do for my mom, certain aspects of the email just rubbed me the wrong way. Some of it seemed a little "woe is us" and "look how much we do for Grandma" and it felt like there was a sense of entitlement. Well, that kind of tone towards someone who has been in their position for quite some time now did not exactly ingratiate them to me.
There were some specific things that upset me, including the fact that they were saying one of the things they do is feed Grandma with the food they pay for. My thought was, "how dare you complain that you have to occasionally feed the woman who is paying for your electricity, water, heat, sewage, internet, etc., who has also taken you out to eat, and who has welcomed you into her home and by doing so has allowed you the opportunity to save some money so you can eventually get your own place." And it's not like they feed Mom every day.
As long as I've lived here, sometimes I buy the food and sometimes Mom does. When we go out to eat, sometimes I pay and sometimes Mom does. But never once has either of us complained about the other eating "their" food.
Another point in the email was that my niece and nephew have sometimes been forced to miss class at church because they have to make sure Mom is okay. First of all, it seems like such a minor inconvenience to even bring up, and secondly, it seems to me that the point of the classes they are missing is to learn about charity and serving one another and doing unto other and, hopefully, put those things into practice. The idea that Jesus would be more concerned about attending class than helping a little old lady in need is mind-boggling to me.
They also talked about how one of their duties when I am not here is to make sure she is taking her medication and measuring her blood sugar. I can attest that in the year they have lived here, they have done that duty for a week and a half. The previous time I was gone, which was for three months, we did not yet know that Mom was struggling with that, and when I came back here after that period, her pill box was a mess as were her sugar levels. So it kind of bugged me that that "chore" was even on their list at all.
They also said one of their chores was to socialize with Mom frequently every day. Now I don't know what goes on when I am out of the house, but my niece and nephew are generally holed up down in the basement (where they live) or out. And that is fine. They are a young, newly-married couple. I don't blame them for that. But I haven't witnessed a lot of socializing with Mom when I've been here. Again, maybe they spend lots of time with her when I'm gone, but I haven't seen much of it myself.
My niece also talked about another chore they do, which is cleaning the main bathroom, which all four of us use, and there seemed to be a slight dig that because they weren't the only two using it, that was somehow a harder chore. Mom only uses the toilet and sink in there as do I, and I am good about cleaning up after myself and keeping it tidy. My niece and nephew are the only ones who use the shower or bath. It just seemed kind of petty to me. Plus, cleaning was part of the original living arrangement.
My niece and nephew have also said they do not want to be responsible for any repairs on Mom's car, which they use primarily for Mom's needs. No one ever asked them to be, that I know of. But they also said they don't use Mom's car for personal errands, which I know isn't true. Maybe in the last three months they haven't, but I know they have in past, and nothing was expected of them other than they put gas in it.
She also talked about how if they continue to live here, they want to get rid of some of mom's "junk" downstairs. I agree that much of the stuff down there could be thrown or given away, but the fact is, it's Mom's "junk," and I'm not sure anybody has the right to throw or give it away yet except her. She may have dementia, but she's still very aware of a lot of things, and I think cleaning her basement would be traumatic for her. Really, any major change in Mom's routine makes her very agitated, and I don't think that's healthy for her.
And really, I don't know why it concerns my niece and nephew so much anyway. I lived in that same basement for years among the same junk (which, really, doesn't affect their major living space all that much anyway), and I never had a problem. I think my nephew and niece can be a little finicky at times. Anyway, that request made me defensive as I imagined how Mom would feel if someone tried to throw out her stuff. We will eventually have to, either when she moves out to go to some assisted-living facility or when she dies, but neither of those times is now.
My niece also talked about how this was more than they had signed up for and that it's taking a huge emotional toll on her, in particular. I argue that this is exactly what they signed up for; I think they just underestimated how difficult it would be.
Look, I am not against compensating my nephew if he quits his job nor would I blame my niece and nephew if they decide that caring for Mom is too challenging and move out. But the email lacked a bit of grace and gratitude, in my opinion, and it upset me, so I wrote back to say as much.
I thought carefully about what I would say in my email and even sat on it for a couple of days before sending it. I knew it would upset them (as well as my brother and sister-in-law), but I do feel some of my feelings were justified.
Nonetheless, I do believe I overreacted in my response, and I do think that some of the things I said were a little hard and sarcastic, and I think I could have chosen a better tone. I also think that some of my email comes off as a bit self-righteous and judgmental, and I do regret that very much.
My niece and nephew were upset, and I get the feeling that my niece is ready to throw in the towel and move out as a result, and I regret that most of all because my niece and nephew are currently in the best position right now to help Mom. My brother wrote an email back chastising me. Some of what he said was justified, and I do agree that my email lacked some of the very grace and gratitude of which I was accusing my niece and nephew.
I did send my niece and nephew an apology email and also said I hoped that they wouldn't let their anger toward me affect their decision to stay on and help Mom, although I am fully cognizant that my original email may have served as a tipping point that would cause them to not want to stay, and that is something I deeply regret because my first priority has always been my mom's well-being.
Although I regret much of what has happened as a result of my niece's email and my response, both of which I feel could have been handled better, and although I certainly regret the tension and stress they have caused in the whole family, there is a part of me that is glad it happened.
I rarely complain or show anger with my family members. I back down from confrontation because I don't like it. I don't speak my mind when I am irritated. I'm the one who is most likely to just say that everything is fine when deep inside everything is going to hell in a handbasket. I handled my sexuality for many years in the very same manner.
But the fact is that I have been angry. Unfortunately, my niece and nephew aren't even the people I'm really mad at, and sadly, much of my anger was misdirected at them. No, I'm angry that my mom has dementia at all. I'm angry that she has changed so much. I'm angry that there's nothing I can do to fix it. I'm angry that she doesn't recognize how dire her condition is. I'm angry that I am losing control over the situation. I'm angry that I can't care for her the way I wish I could. I'm angry that I can't be with her and Jonah at the same time. I'm angry that she has to slowly disappear and that we have to watch it. I'm angry about how helpless I feel; that it seems no one can step up and care for her the way she needs to be. I'm angry that I've missed so much time with my husband because of her condition. I'm angry that I feel guilty when I leave her, but equally guilty when I leave Jonah. I'm angry that we as a family just can't take care of her unconditionally.
I've realized something I didn't recognize before: my mom has grown dependent on me (which I knew), but I have grown dependent on her dependence on me, and now that I have made a conscious choice to go back home to Jonah, I feel like I am losing her, and that sucks! As I said, there is this incorrect notion that if I leave, no one can take care of her the way I have, and that if I'm gone, she won't be cared for as well as she is when I'm here. I don't think that's true, nor is it fair to any of my family members who do their best to care for her.
The fact is, somehow Mom will be taken care of. In what fashion, I'm not sure, but she will be taken care of whether I'm here or not. But as one who has always been kind of in control of much of her care and who is kind of a control freak, it is hard for me to let go of that control and trust anyone else to take over. And perhaps there is even a bit of jealousy that someone else will be in charge of her. No matter how difficult, challenging, and even suffocating it is to care for my mom, there is a part of me that doesn't trust or want anyone else to do it, and that is not fair, either.
I wonder if there was even a subconscious part of me that was trying to sabotage things so that no one else could take care of her. I hope not because I have always said my first priority is making sure Mom is cared for, and if I succeeded in sabotaging everything, I have failed in my desire to help her.
I wish I could take Mom home with me, but it just isn't possible, and I don't think it would be wise to take her away from her family, grandchildren, home, and friends. She's already losing familiarity with an environment she has lived in for 50 years; taking her out of it completely will not be helpful to her condition, in my opinion.
My brother said one thing in his email to me accusing me of wanting "to make sure [my family takes] care of Mom the way [I] want them to." I actually think he's right. I want to be in control of the situation, and I no longer will be, and that is hard for me. But maybe it's time to let somebody else step up.
My brother also accused me of acting like a "victim (poor me)," which may have been justified, but I have never felt like a victim, and I don't think I would have made any of the sacrifices I have made if I were. I have never asked for anything for helping Mom, nor I have expected anything but her well-being. I just do it (and have done it) because I love and care for her. I know my family members do, too, and I know they also have sacrificed much to care for Mom (including my niece and nephew).
The bottom line is that I'm sorry my email upset everyone and I am sorry for some of the things I said and the way I said them. But I am not sorry for expressing how I felt nor am I sorry for addressing some of the things that bothered me about my niece's email. I just hope and pray I didn't drive my niece and nephew away. But even if I did, I think they needed to know some of the things I wrote, and the fact is, they were never going to be here permanently. It doesn't change the fact that we need to find a more permanent solution.
I just hope we can find a way to help Mom. I wish there was some magic wand we could wave to make everything better. As it is, we're going to have to figure something out.
I haven't heard from my niece and nephew. We live in the same house, but are on different schedules. I've seen my nephew (who seems cordial, but I can tell he's not too happy with me), but I haven't seen my niece at all since our exchange. I apologized. I did my part, I feel. If they want to hold a grudge, that's on them. I just hope Mom doesn't inadvertently suffer because of it. I hope this all blows over.
Jonah keeps telling me everything is going to be all right. I hope he's right.
Addendum: Almost immediately after writing this post, my niece and nephew knocked on my door and asked if we could talk about what had happened. We talked things out and realized how things look from the other's perspective. As far as we're concerned, all is forgiven and the matter is as if it never happened, and all parties feel much better about things now. They are leaning towards staying on until June, so that at least might delay the inevitable for a few months, at least. We'll talk about it at the meeting next week, though, and see what the final decision is. In any case, I'm glad the tension and anger is behind us now.