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.


Duck said...

You carry a heavy load. I can understand fully your frustrations with your niece and nephew. And, other family members. It is hard to be the one on whom everyone counts. You also need support.

Would it be realistic, or even feasible, for you and Jonah to move into your mother's home full-time? It seems that much of your work is here. I am sorry, I am not remembering what Jonah's work is. Maybe, you could hire home healthcare to come in a few times a week to help take some of the "emotional pressure" off of you? If your siblings are dragging their feet to help, maybe there are people in the community, or church, who are more willing and able to help?

I truly am sorry that things are so hard: your mom's dementia is not fair, the demands on you from your family are unfair, being away from the one you love and the one who loves you is unfair, etc. etc. etc. I wish I had the magic answer for you.

Sending love and good energy your way. :) Duck

Dean Scott said...

I apologize in advance for the long response. Here are some thoughts that I hope will help:

1. I think you have been overwhelmed since you have been your mom's primary care giver for so long with apparently limited assistance from your siblings. I have only read your blog for a couple of months, but I believe you are a wonderful person. Your family may have become too comfortable with you shouldering the bulk of the burden.

2. I think it is time for your siblings to pick up the slack. How they do that is primarily up to them. It will probably be very hard for you to let go, but I hope you will be able to do that so your siblings can assume their responsibilities.

3. Family dynamics are challenging. I don't know all of the dynamics, but it is possible that your married siblings do not consider your relationship with Jonah to be as important. If that is they case, they are wrong. Jonah has sacrificed by supporting your decision to care for your mom these many months. Loving relationships are hard to find. The two of you have every right to nourish your relationship, and that means you now need to be together.

4. I don't think grandchildren have the right to dispose of their grandma's property even if they think it is clutter. That is your mom's decision along with assistance as needed (based on her dimentia) from her children, as long as the "clutter" does not create a hazard. Likewise, I think grandchildren generally have a secondary responsibility for care unless they received primary care from your mom, so I can understand how they might expect to do less. I hope they accept your apology.

5. The proposed cost of $500 per month is very reasonable even considering the other concessions the grandchildren are receiving. My mom's assisted living care started around $4,500 per month and ended at $6,000 per month as her physical health deteriorated before she passed away. That said, money is not the only factor in the decision.

6. My mom initially refused to consider community aging resources, but my brother-in-law had done prior research for his mother. He found a couple of services that mom would accept which reduced the burden on the family and the cost of her care center.

I really, really apologize if I have said anything that is out of line or misunderstood your situation. Please forgive me if that is the case.

Again, you are a wonderful person. You have my prayers. It is so hard to watch parents age. My very religious, proper, and prim mom summed it up best one day at age 86 when she said, "Aging sucks."

Dean Scott said...

So sorry - I missed the addendum about things working out with your niece and nephew - wonderful news.

Gay LDS Actor said...

Thanks, Duck and Dean, for your comments.

I don't wish to give the impression that my siblings don't do their part. They do a lot, and without them, this would have been much harder. I am just emotionally drained of late and am venting. I never want to give the impression that I'm doing all of this by myself because that isn't true.

And unlike Jonah and me, everyone else has kids. Two of my siblings have declared bankruptcy. So it's a tough time for all.

But as Jonah reminds me, just because we don't have kids doesn't mean that these sacrifices of being apart haven't been difficult for us. Nor does it mean that as spouses, we have every right to be together as any of my other siblings.

But ultimately, it has been my choice to stay here and help Mom, and I have taken on the consequences of that choice.

Unfortunately, Duck, it is not feasible at this time for Jonah to move here. In an ideal world, I would love that, but Jonah also has his parents to care for. Our house is underwater due to the bad housing market, so we would lose money if we were to sell it. Plus we would have a ton of stuff and three cats to figure out how to deal with. And Jonah, who works in the costume industry, is more apt to find a job where we are than here in Utah. We have talked about moving to Utah in the future, but it's just not possible at the moment.

My siblings and I are also trying to get the church more involved in helping my mom out, and if my niece and nephew stay until at least June, at least we know Mom will be watched over for a little while longer. But we should come up with a long-term plan.

Unfortunately, dementia has no magic answer. :-(

Thank you, Dean, for your kind words. It is true that I have been overwhelmed, and it's kind of reached a head. I do think it's probably true that my family has come to rely on my being here too much, and that's partly my own fault. But I again reiterate that they really do a lot to shoulder the load.

The bottom line is that no matter how hard it may be, I need to let go of Mom's care (for a while at least) and concentrate on my relationship with Jonah. I need to trust that my family will continue to give my mother the best care they possibly can and do what I am able to do for Mom from where I am.

I think my siblings are very supportive of my relationship with Jonah. If anybody doesn't think it's as valid, it might be my brother, but he has never left me with that impression.

I agree that grandchildren shouldn't dispose of a grandparent's possessions unless it's a safety hazard, which it's not. In talking with them, I feel they want to better prepare the house for the eventuality when Mom will one day leave, either by choice, by necessity, or by death.

I understand the practicality of that desire, but I don't agree that it's their place to do so.

I also agree that the $500 a month fee is reasonable. I think in my letter I was a little defensive about it because I was protective of my Mom's finances, which are still hers even if she does have this disease. I thought, "How do we explain to my mom that she is paying someone to stay with her rather than the reverse when she doesn't even recognize she even has a problem?"

But in retrospect, I agree that the $500 a month is probably something that should be paid to protect and care for her. And really, my niece and nephew are in the best position right now to currently care for her.

Thank you for your advice and words. I appreciate them.

And, yes, "aging sucks!" lol

LCannon said...

You don’t have to print this in its entirety – if you choose to publish any of this email at all.

The introduction to your last email stated that you had prayed, revised, pondered and changed the contents of your email time and time again. There’s proof in the three day period that took place between Ellen’s email and your email whereas there was a space of less than four hours between yours and Patrick’s – which indicated to me that he did not ponder your email nor did he pray about his response. His reaction to your email was much like yours and mine were to Ellen’s. You aren’t the only one who was rubbed the wrong way.

You are the primary care giver and have been. True, there are things that Nate and Ellen do for mom that Kayla and I don’t do – such as yard work and keep of the house. But I KNOW that Sunny, Kayla and I have ALL conversed with mom. Jenna and I have played games with her. Oft times we will have actual conversations. There are some days when it is null – not because of our lack of efforts – but because the dementia has robbed mom of her mind.

Though there is a family picture hanging on her wall with Sunny and dad in the same photo, she somehow believes that she has raised the four of us on her own – and dad’s death took place long before it did.

I may be stepping over the line with this next assumption, but I’m also believing that part of Patrick’s problem is that you have consulted with Jonah and somehow brought his family into it. He has a problem utilizing mom’s ward family. You would think in his position he might have a different understanding. Whatever.

Don’t feel guilty, Cody. You have done so much. I suspect you will be the last one that mom forgets.

LCannon said...

I stopped reading your blog to write some of my thoughts to comment before I forgot. And then I sent without finishing.
I’m angry too. But I think I’m more sad than angry. I cry a lot. Who cries more? Me or Jonah?
And I don’t know that you “sabotaged” anything more than Ellen did in lighting the fire in the first place. How much has our wisdom or maturity increased since we were in our early twenties? I’m not upset with Ellen or her email or your email or even Patrick’s – though I did sense that he wasn’t reading with the same understanding. But then as a father, I’m sure he felt it was his duty to defend Ellen – though I still think he could have handled his words differently – as I guess so could have you – though I still think you write with a great amount of eloquence and wish that Patrick could have understood the thought that you put into it.
Jonah is right. Everything will work out. We’re just too close to the situation to see it right now. “In God’s due time . . .” yea, yeah, yeah . . . .
Glad to hear that you and Nate and Ellen were able to resolve some issues. Let’s hope Patrick may find the same peace. Let’s hope that we all find peace and comfort.
Love you LOTS!!!!
Hang in there. You are not alone. You need to spend time with Jonah. You need to delegate.

Gay LDS Actor said...

Hey, LaTiesha,

(It's weird calling my sister by her anonymous blog name - lol)

I agree with you that Patrick's email probably had less thought in it than mine did, but even if I was justified in my anger, some of my words were just as hurtful as Patrick's were.

Patrick did apologize to me, though, and said that much of his email to me was written for damage control to not discourage Nate and Ellen from leaving.

But I was glad to know that I wasn't the only one bothered by Ellen's email. Jonah was certainly upset by it, and it sounds like you as well. Whether she was upset by Ellen's or not, Kayla did indicate that she wasn't offended by mine.

I apologized to Nate and Ellen for anything I might have said that hurt them. I was hoping they would apologize to me as well, but I don't think they feel they've done anything wrong. I'm just going to let it go, though. Life's too short to hold grudges or dwell on perceived wrongs. As far as I am concerned, the matter is over and done with. I'm moving on.

Today Mom thought she had attended East Midvale Elementary School, and then when I told her she had attended school in San Francisco, she was able to accurately tell me the names of each of her schools and when she moved here and how far apart all of her children are in age. Dementia is such a funny disease.

You may be right about Patrick not appreciating my bringing Jonah's family into the mix. Jonah and I also theorize that perhaps Patrick feels guilty that of the four of us, he has spent the least amount of time participating in Mom's care, and maybe as older brother, he feels he should. Would you agree with that?

It's funny that you say I will probably be the last one Mom forgets. One of my fears is that my going away will cause her to forget me.

I think you cry more than Jonah. But he certainly is a very sensitive soul.

I totally agree (and Jonah and I have discussed this much) that Nate and Ellen are young and still have some maturing to do. I wonder what their perspective will be on the situation in 10, 20, or 30 years.

I'm not really upset with anyone's email at this point. Like I said, it's over and done with. Hopefully we can all move on in a positive direction that will best benefit Mom.

It also turns out that the compensation idea was Patrick and Sunny's suggestion, and Ellen has been wanting to move out for a while, but Nate thinks they should stay a little longer. We'll see what happens.

And you're right, as a father, Patrick's first loyalty is probably to his daughter, so I understood why he rushed to her defense and was hoping to diffuse the situation before she even read the email.

We all could have managed our words differently. Hopefully we can learn something good from this.

Thanks for your love and encouragement and positive thoughts. I love you LOTS, too.

And you're right: I need to be with Jonah and I need to delegate better.