Meltdown
November 20th, 2006
I was just over at the Alzheimer’s Association Caregiver Forum where someone had posted a message about the caregiver’s stages. I think I passed from one stage to the next on Sunday night, in a matter of minutes. I had a meltdown right in front of my mother (which I had tried never to do) and although it seemed to come out of the blue, these transitions never do.
It doesn’t really matter what specifically precipitated it, because it could–and would–have been anything. In an instant I knew I was going to start crying, in a way I hadn’t cried since my Dustin died, so I went into my bedroom and lay down in the dark. But I can’t close the bedroom door without arousing my mother’s curiousity and I couldn’t keep myself quiet, so she followed me in. I just let it all out, and she tried to comfort me and understand why I was so upset. Of course I can’t tell her that she is the reason I’m sad.
Well, it’s actually not that simple. The real problem is that I cannot get it into my head that I can’t have a rational discussion with her about assisted living. I tried again on Sunday afternoon, using the “I’d like to move back into my house” tack. Of course you do, she said, as she always does. I can’t leave you alone, I said. She agreed with me on this until I suggested, once again, that she move somewhere where she’d always have someone around, even when I’m at work. I would never do that, she replied.
How do people do this? Why does it have to be so awful? I know I sound like an 8-year-old, but I also feel like one. Old enough to know there’s something dreadful afoot but too powerless to combat it. And I think I reverted to my 8-year-old bag of tricks when I burst into tears later in the evening.
I’ve read the most moving and heartbreaking personal accounts of how loving family members moved their moms and dads into assisted living or nursing homes. Nearly all of these accounts caused intense grief at first, even though most of the moves resulted in an improved situation for all. Almost everyone I’ve spoken to says they wish they had done it sooner, but I understand how one can believe that remaining in one’s home is best. It’s still excruciating.
Another issue is that I’m into my third week away from work, and Thanksgiving is coming up in a couple of days–it doesn’t look like we’ll be spending it with family, which disappoints me. And Saturday was the seventh anniversary of my father’s death. And my 13-year-old dog Lily is having increasing difficulty getting around–am I just hanging on to her because I’m afraid of losing one more part of my life?
So my mother is now following me around, worrying that I may be “coming down with something” and wanting to help, which is sweet but also accentuates how our relationship has changed. Tonight she said good-night at least five times, each time telling me that she was going to leave her door open during the night in case I needed her. I feel my eyes well up, just writing that.
I was still very upset today, so I called the local Alzheimer’s Association and talked to the social worker there, who sounds wonderful. I made an appointment to talk with her, which I should have done much sooner than now. I have a med appointment tomorrow with my longterm psychiatrist and I’ll ask him to refer me to a therapist. Can’t do this much longer.
November 20th, 2006 at 11:20 pm
Deb,
I hesitate to ask questions or offer gratuitous advice. But…
Have you thought about why you are trying to approach the question of assisted living so obliquely? Are you hoping that your mother will pick up on the clues and make the decision herself? Is this realistic? Would your relationship with your mother stand a direct frank approach? Could you ever say to your mother than you cannot look after her any more? If not, why wouldn’t she expect the status quo to continue?
I’m in the relatively luxurious position of not having to face your dilemma (though my own version of it is rapidly approaching nonetheless) so I cannot hope to understand the full complexities of your feelings. I only hope you don’t feel that you have run out of alternative approaches when some still remain.
Good luck, Mike.
November 21st, 2006 at 8:13 am
As you know, I am speaking from experience here. You are on right track by getting help, no one should ever think for a minute they can do this alone. You have to forgive yourself for what you did not cause and can not change. I understand completely your wanting your Mom to give you “permission” I think you know that is not going to happen and that her safety and care has to take precedence now over her (or your) happiness. It is this waiting time that is most difficult. Once she is moved to assisted living, expect it to be pure hell but just give it a little time. She (and you) will adjust and you soon be able to be a daughter again. This too shall pass.
With you in spirit,
Pam
November 21st, 2006 at 9:25 am
Deb,
I’m so sorry you’re going through this. I just wish I could help, and hope the social worker and others can. Please remember what a good daughter you are…
November 21st, 2006 at 4:58 pm
It’s so hard making decisions for your parents. You want your mom’s blessing - it would make you feel so much better, I know… but I also know that’s not going to happen. We never think of the probability of having to make decisions for our parents.
You are grieving in many ways: because your mom can’t be your mother, because you have to be her mother and because you have to move her out of her home. It’s good to know that you consciously need help, most don’t think about getting help for themselves because of worrying about their parents. Do the things that you need to do to help yourself. Take care - you will be a stronger You soon.
November 21st, 2006 at 8:24 pm
Deb,
Whatever it is you do, whichever choice you make, you know in your heart of hearts you have done the best you could and then some. It’s a rocky road up ahead. Put on strong boots, a warm coat, and carry a flask of forgiveness in your back pocket. Your mom will get through, and so will you. There are four million people traveling this same road, or should I say highway? Your blog, the incredible effort you make to describe that journey, speaks volumes of your courage and wisdom. You have no idea how valuable your words are to me. They reassure me, they comfort me, your lask of answers, your questions, it’s as if you were describing the dark scenery I passed through years earlier. So familiar.
Our family was completely committed to keeping my father in his own home. We moved hell and high water to do it. And even with a team of caregivers, AND a willing and able spouse, AND two daughters less than a mile away AND five more “on call”, we couldn’t make it happen. Don’t for a second think anyone knows how to do any of this stuff. You’re doing an incredible job of balancing your mom’s needs and your own, your words speak to the heart of the matter - NONE of us know what to do. It’s all uncharted territory and we are left to do what we hope to god is the right thing.
With the hardest decisions, I would try to put myself in my dad’s shoes and ask what he would do. I believed, above all else, he would never, for a second, tolerate anyone suffering on his behalf. Especially not his wife whom he loved or the children he adored. He would have requested to be left in the woods with the bears before he would have allowed any of us to suffer on his account.
No matter how bad it was, no matter how grim it got, I hung onto the fact he loved me and would someday know all that we did, we did out of love for him and when it got too bad, we acted out of love for our mother. Even the parts I detested - like putting him in a nursing home.
The truth of the mattter is, they deserve better than any of the options we have available to us. If there was ever a generation to change that, it will be ours. After experiencing Alzheimer’s, I totally get it. It’s up to us.
Hang in there, Deb. My thoughts are with you.
Patty
November 21st, 2006 at 10:47 pm
Hey Deb,
Good for you for getting help. It is important that you are coming to terms with the situation because when and if you move your mom into an assisted living, she is still going to need you - just in different ways. So take good care of yourself, as much as possible.
You know despite all of my complaints about Mom’s ALF, she still thinks she is in a really nice place. She has no idea about our complaints or all that we do while she isn’t looking to make things as nice for her as possible.
And feel how lucky you are that your Mom is trying to comfort you; that’s so beautiful.
November 22nd, 2006 at 2:36 pm
At this point all I can do is resound all the above comments. My heart is with you, Deb, and with your mom.
November 22nd, 2006 at 7:05 pm
Karma just said what I wanted to but said it better.
Don’t see the ALF as a failure on your part. It’s just the next transition. You’ll still be there for your Mom as often as you want. The daily routine caregiving will be handed over to a well-rested staff of many. You’ll be there to oversee it and enjoy your Mom on a whole new level. Imagine what it will be like to go and have lunch with Mom and go for a walk. It’s time to enjoy being a daughter again.
I’m in the exact same stage you are at. It’s time for both of us to try and let go. As painful as the thought of Mom being in a nursing home is, it’s more painful to imagine her here in my home in deteriorating health (inevitable) with not nearly enough help and my energy stores depleting.
Keep us posted. Thanks for sharing and always remember that you’re not alone. I said a prayer for you and your Mom.
November 24th, 2006 at 8:50 am
Deb - I can’t offer anything new here - Mike said it very well in the first comment above. We are going through the same thing with my mom right now - my sister is trying to take care of her at her house, but things with Mom are falling apart pretty quickly. I wish you much support through this hard time and a clear resolve about what must be done. You are a very good daughter.