Saturday, September 29, 2012

I Know I Shouldn't Feel Guilty, But...

These last few months, my siblings and I feel that my mom's dementia has taken a turn for the worse (although, ironically, the last couple of days she has seemed almost like her old self (to me, at least).  In addition to my mom's condition worsening, my niece and nephew-in-law are considering moving out in December.  It's not a for sure thing, and they are still giving it serious thought, but if they do leave, the question remains of what to do about Mom.

She can't live alone anymore.  We just don't feel it's safe.  She's already gotten lost several times in a neighborhood she has lived in for 50 years now and which was once so familiar to her.  Her confusion and unawareness have increased.  Her memory is pretty bad, and if someone isn't there to remind her to take her pills or to check her sugar or to eat or to pay her bills or to handle solicitors and repairmen or help her deal with her day-to-day affairs, I just don't think she can manage on her own.

For the first time in a long time, I am going back home to Jonah for an indefinite period of time, and so I won't be here, either, and Mom does seem to depend on me a lot, so I know it's going to be hard for her.

I'm not sure what the next step for Mom is if my niece and nephew move out.  My brother and sister-in-law both work full-time and can't take care of Mom.  My youngest sister has two infant children to care for.  My older sister has offered to move in, but I don't think her husband is sold on the idea, plus her daughter tends to drain Mom.  But that may be the only option if it's feasible.

Jonah and I would take her, but I don't think moving Mom from a more familiar environment to another state away from her family, friends, and grandchildren is in her best interest, either.

Ideally, I would like Mom to be able to stay in her home for as long as she can, and she is still aware and alert enough that I don't think an assisted-living situation will be beneficial for her and might even make her feel resentful.

Also, her current insurance doesn't cover non-medical custodial home or long-term care, so as she worsens, we will also have to consider how to pay for her care. 

These are the questions, though, that my siblings and I are facing.

As to the title of my post, I've started the process of transferring most of Mom's bills and important correspondence to "paperless" rather than her receiving them by snail mail.  I'm doing it without her consent.  I tried talking to her about it, but it just seemed to confuse her and the fact is, she won't remember having the discussion anyway.

My reasons for doing it are, admittedly, for her protection.  This will make it possible for me to just pay all of her bills for her, and since she has been prone to forget to pay them (or accidentally double-pay them) in the past, this will ensure that that doesn't happen.

Also, like her mind, her mail has become more scattered and disorganized.  She used to have a very organized filing system (and still does when I'm there to make sure it stays that way), but now she is prone to just putting mail wherever, and this sometimes causes important things to get overlooked.

I, frankly, wish I could take over all of her mail for her, so I know that anything important she receives is not misplaced or overlooked.  And I really wish I could get all these charitable organizations to stop sending her so much mail.  It's gotten ridiculous, and Mom has such a generous heart that she'd probably give beyond her means were she to donate to all of them.  As it is, I often throw most of her junk mail out when she isn't looking (and, of course, she forgets all about it anyway).

But I guess that's what makes me feel guilty.  I do all these things behind my mom's back.  And I know I shouldn't feel guilty about it.  After all, it's for her own safety, security, and protection.  But it still makes me feel dishonest.  I had to go through my mom's purse today to get some information to change over some of her bills (which it turns out I didn't get enough of, so I have to do it again tomorrow), and I just felt like I was invading her personal property without her permission, which is something I never would have done when she is well.

But I have to do it because Mom will fight against it, whereas this way, I don't even think she'll notice she doesn't get paper bills anymore.  I'm also likely going to cancel her cell phone without her permission.  Whereas she used to use it all the time when she was well, now she is flummoxed by it.  She can't figure out how to use it unless someone shows her; she never remembers to charge it; and she never answers it when one of us try to call it.  I frankly don't even think she'll be cognizant that it is missing, but I do know that if I try to convince her to cancel it, she will fight me and claim that she uses it all the time, so I think it's better to take care of it surreptitiously.

If she used it, that would be one thing because we'd love for her to do so when she gets lost or when we're trying to find her.  But she doesn't, so it doesn't seem worth the cost.  We may try to replace the cost of it with a GPS tracking service instead.  Then we could find her more easily.

I just don't want to feel that I'm taking away my mom's independence or taking any joy out of her life (she loves checking the mail and getting mail, even if it's a bill), and I feel bad that this seems to be exactly what I am doing.

Yet these are the realities we are facing, and it will only get worse from here on out.  The leash will only get tighter as the dementia takes more away from my sweet mom.  I wish it didn't have to feel this way.  :-(


Alex Murray said...

I had a grandmother, my mom’s mom, who suffered a severe seizure that caused a stroke the day I turned seventeen. She had been living with us for a few years prior, but when the stroke hit, she needed constant, around-the-clock care. Unfortunately for my mom, her two brothers were thousands of miles away and her sister wasn’t in contact with the family, so she was the sole caretaker. The family left at home (my parents and me) had to make some extreme sacrifices to make sure my grandmother was well cared for. Her memory was shot, she needed to relearn how to speak, write, eat, and even how to swallow. She lived with us until about eight or nine months before she died.
As my grandmother’s mental health deteriorated despite her outstanding physical recovery, it soon became necessary to create a sort of bubble world for her. We all agreed about how we would treat her, what would be talked about and what wouldn’t, and things like that. We were just very kind and loving to her, and even though she was really out of it most of the time, she seemingly enjoyed living in her bubble. She was like a child, content with simple living.
I don’t know all of the details of your particular situation, but don’t feel guilty. She passed about a year and a half ago, and I’m sure that she can see clearly now that what we did was for her benefit. All of the lies to keep her happy or content actually shielded her from a lot of sadness in the last few years of her life. Even if she asked for some news about her other daughter who refused to interact with the family, she would forget she asked eventually. It seems so sad, but it really is a blessing in disguise.
The guilt and the icky feelings that come from doing things without her knowledge or consent are just a part of being responsible for someone. The same thing happens when you deal with young children and you lie to their faces. It’s for their protection and well-being. I doubt you’re doing anything shady or mismanaging her money, so even though it’s hard, just accept that it’s a result of being fully aware of the situation.
I hope this is helpful. I wish people didn’t have to go through dealing with a loved one with something like dementia or any sort of impaired mental state. I know that working to keep my grandma feeling content, comfortable, and protected changed me. It made me a stronger person, and so much more empathetic when I’m around people who suffer. It made me more aware of my surroundings and what I can do to help. To be honest, it really reminded me of a lot of the qualities of Christ—being patient, long-suffering, charitable, kind, and especially taking action. I’ll pray for you and your family so that you can all discern the right path for all of you.

Miguel said...

Oh man. I'm sorry you're dealing with all of these issues. Do you have power of attorney for your mom? If that's the case then you can make all the decisions on her behalf (still have some of the guilt, but again--you're doing the best you can)--don't quite know what else to say.

James said...

Right before I left on my mission my grandmother who lived with us was diagnosed with a terminal disease. My mom took care of her up until three days before she died when they had to put her in the hospital. When I talk with my mom, she went through many of the same feelings you're going through. As the disease progressed it started to affect her mind and my mom started making decisions for her. She felt like she was treating her own mother like she was some kind of child. Now 21 years later my mom looks back on it differently. She has let go of the guilt and realized that she did my grandmother a great service. It was one of the hardest things she's ever had to do. Now when you talk to her about it she says that we all came into the world as helpless beings. We needed someone to take care of all of our needs because we were incapable of doing it for ourselves. No parent feels guilty in making decisions on behalf of their infant. Many of us, as we leave this life almost return full circle to a point where we once again rely upon someone to take care of us. While it is extremely difficult, is there a better way for us to be able to repay our parents for all they've done than by taking care of them when they needed it the most? My mother compares it to the women who stayed with Christ at the cross until he died. Many of his followers left and couldn't stay seeing him suffer. My mom says she stayed by my grandmother's cross until the end. I think that my grandmother will understand. So will yours.

Gay LDS Actor said...

Thanks, guys. I really appreciate the encouragement and kind words.

Alex, thanks for helping put things in perspective. It's true that everything I do is designed to protect my mom. None of it is self-serving.

There have been many positive things that have come out of dealing with my mom's condition, too.

Miguel, yes, my brother and I have power-of-attorney over my mom. Thanks for thinking of me.

James, thanks for sharing your mom's experience with me. It was very helpful to read that. I really have been very cognizant of the whole "circle of life" idea while dealing with my mom's health.

I agree fully with the idea of repaying our parents for all they did for us when raising us.