Wednesday, May 9, 2012

It's so hard to be the parent, to your parent.

Two weeks ago today, Steve and I became the villains in his Mom's life.  To be honest, we were already somewhat villains as we had taken her car away and "trapped her up here".  But two weeks ago we had to take her to a geriatric special care unit for evaluation of her Alzheimer's and observation.  She'd been kicked out of her senior independent living duplex, and wasn't allowed in that facility's assisted living or their nursing home (for fear she'd be a flight risk). 

After twelve days in the special care unit, she was more cheerful, had gotten over her cold anger at us, and was so pleasant when we picked her up.  That should have been a clue.  Despite multiple discussions with Mom and the social worker and doctor (including some ugly ones) in the special care unit about her not being able to live on her own and not being able to just move away, she still believed she was going to walk out of there and be in charge of her own life.  She was not happy when we pulled up in front of the nursing home she was moving into.  She was shocked, angry, and hurt, she said. 

She still does not realize why she needs the help.  Her evaluations found that she makes poor decisions because of her Alzheimer's and she is prone to depression.  It also found that she can not drive at all, manage other forms of transportation on her own, or take care of her laundry or housekeeping.  She needs someone to help prepare her meals, shop for her, manage her money, and manage her medication.  She needs supervision with bathing (or she won't), dressing (or she'll wear same outfit for days), eating (to make sure she does it), and toileting (not sure I agree with that one yet).  She is not oriented to place very well, or to time.  She usually knows where she is (except when we go out of town), but she doesn't understand distances between other places well and thinks family members who live several hours apart are actually close to each other.  None of that was a surprise to us.  We knew it was all true, but when you see it all laid out on paper, it's sobering.  She is not safe to live alone anymore.

Because of her poor decision making skills, she thinks she can just move back to her old hometown alone, or go get another apartment out by her sister.  She thinks that she can still drive.  She thinks that if no one will drive her to her sister, she'll just go ahead and walk.  That's actually the final straw that got her kicked out of her independent living ... concern for her safety ... that she actually might try to walk away.  And that persistence in believing she can move and live on her own is the reason every assisted living facility we talked to rejected her.  No one wants a moderate Alzheimer's patient because of their flight risk.  Mom's options are memory care facilities or nursing homes.

We talked to several memory care facilities.  Some were full.  Some were basically just really expensive, locked nursing homes.  Some didn't take medicaid, which Mom will eventually need.  Some were so far away that Steve would find it hard to fulfill his role as her caregiver.  We don't want to just receive a report of her doctor's visits ... we want to be able to be there.  We don't want to miss out on her care assessment meetings ... we want to be there as much as possible.  We want to be able to get to her quickly if we receive an emergency call.  She doesn't understand all that, though, and just wants to be by her sister.

So if she was by her sister, would she be happy?  No.  She'd only be able to see her sister when her nieces could drive her sister to see her ... because her sister also has Alzheimer's and also can't drive.  And she'd forget how often her sister actually comes.  She'd see our kids just a few times a year, most likely.  I don't know how often Steve's sister would get there with her kids, but not as often as Steve's Mom would like.  So she'd mostly be alone still, and it would be harder for us to be her caregivers.  Then she'd want to move "home" still to where she grew up.

If we moved her to where she grew up, she'd really be alone.  She'd have to be in the nursing home.  There are no memory care facilities there.  She wouldn't be "running around town" with her high school friends as she imagines.  She'd be alone, with infrequent visits from everyone she loves.

But in her mind, life would be perfect if she could just have one of those situations instead.  In reality, she's just trying to run away from her own unhappiness with the changes happening in her own mind. She thinks if she can just move somewhere else, life will be better.  But she will still have Alzheimer's disease and she will still need to live in a facility.

So we found her a small, well-rated nursing home very close to us.  With only 17 other people to care for, they can keep a close eye on her.  The residents seem friendly, and have a lot of freedom within the facility, and we hope she'll make friends there.  She is very social when she leaves her home ... but when she's in her home, she often doesn't leave so she gets lonely and depressed.  She did that, even when she still had her car.  But it's a nursing home, and now she really feels trapped.  So we are the villains, and everyone else gets to be the listeners who hear how terrible we've been, while we take the heat. (That's not their intention, but it is the unfortunate reality.)

Everyone tells us we're doing the right thing.  Everyone tells us we're handling it well.  Everyone tells us we've got broad shoulders for this burden. Everyone says they're impressed with how we're managing this. But sometimes we feel weak, and hurt, and we wish we didn't have to be the villains.  On Mother's Day, we'll go see her, and while she'll rejoice over her grandkids, Steve and I will get the cold shoulder.  Steve's sister won't have it much easier, as she'll be begging to leave with them.  I guess that is a different burden to bear. 

We know it's right to keep her safe from herself.  We know it's right to make her take the medication that can help her.  We know she did the same things for her kids when they were young, even when they didn't like it.  But to be honest, it's hard to be a parent to your own kids and have to be the bad guy.  It's even harder having to be a parent to your Mom, and have to be the bad guy while she lets you know how disappointed she is in you.  Because we've taken steps to keep her safe, we're being rejected by her. 

For how long?  When will she forget?  We don't know.  And today, I'm not handling that well.  To be honest, I just want to sit and cry for Steve ... and his Mom ... and myself.  I know it has to be hard to realize that your freedom has ended, that you must rely on others to care for you and to take you to see other family members.  But it's best for her.  Unfortunately, until she settles down, we can't really take her to see her sister.  We can't take her on a trip, only to have a huge fight about her not wanting to return.  We want to, but we can't.  So we'll have to be the bad guys for awhile longer.  We're going to need God's strength and grace to get through this.

"Lord, help us!  We are not strong enough to do this without you. We can not face Mom's wrath, or the judgements from those looking on who don't fully understand Mom's impairment, alone. We need your strength, because we feel very weak and hurt, too.  Amen."

April E.

4 comments:

  1. April,
    My heart goes out to you and Steve. Your position isn't easy, yet it's becoming so much more common. It's hard, just as in being a parent, to separate what yourself from taking things personally when your children lash out. They mean it in the moment, but not forever. It's the same here, but even more different because you have the expectation that she has some awareness of the situation and how hurtful her cold shoulder is. However, her understanding of the situation is limited to what she remembers. If she truly understood, she would be willing to let you make the safe choices you are. I am praying for strength and confidence and God's grace for you. I am also praying for a strong support system to be put before you and for God to heal your hurt.

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    1. Thank you. We know it is more the disease talking than Mom, but it is still hard. It's hard to get up the nerve to go there, not sure how she will act. We need to, because we want to honor her, but it's still difficult.

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  2. April, keep posting about how this situation is going for your family, because each time you post, I pray more for you all. I don't know if my parents will have Alzheimers, or not, but I'm learning a lot from your blog about the illness, and I am praying for you all.

    Julieanne

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    1. Your prayer means so much, Julieanne. :) Thank you!

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