I had this admittedly crazy idea to fly up north and fly with my mother back down to my small Virginia town so that she could spend a couple of days with me, see my teenaged daughter whom she hasn’t seen since this summer when we went up to celebrate her 80th birthday, see my 21-year-old son whom she hasn’t seen in a few years, and do a small pre- Hanukkah latke thing. I made all the arrangements, steadied myself for the stress I knew would come fwith the visit. And then, my sister called and told me my mother had, just three days after the event, already forgotten she had been to her house for Thanksgiving.
“She seemed to know she had been somewhere,” my sister said, “but she wasn’t sure. I think maybe we had better rethink the plan of her coming down to see you.”
The plan which my sister up north had been all for, but my sister who lives a half hour away from me had thought was completely nuts.
“Mom’s way too out of it to make the trip,” she had said. “Not a good idea. Besides, it will drive you nuts.”
Yes, but. How else to get in what might be one last visit with my children before her memory goes completely? I could handle the stress. I knew it would be difficult and painful for me. But now, now I had to wonder: would it be too hard on Mom?
Not quite three years ago, my sisters and I all but tricked my mother into rehab to finally dry her out after more than thirty years of steady drinking, only to find that it wasn’t her drinking that was responsible for her memory problems at all. Or not solely. She had Alzheimer’s. And once Mom got the diagnosis she decided to start drinking again. Who could blame her?
Within three weeks we found her a great assisted living place with a memory unit attached, cleaned out, staged and sold her house, and her life as she had known it was over. Even though she’s on Aricept and has been advised by her doctors not to drink, the white wine that has been her best friend for so many years continues to provide her comfort as her world narrows even further.
And now, a few days after she spent the Thanksgiving holiday with her youngest daughter, son-in-law and grandson, she has no memory of it.
Does it make sense for me to take her out of her safe and familiar environment just to see her other two grandchildren for three days when she may well have no memory of that either? Who am I doing this for, anyway? What do I hope to accomplish?
She is more fragile than ever, even though she manages to keep her voice light and happy during our phone calls. We have the same conversations each time and I impart the same news about myself, my husband, my children, and even my sisters, whom she may just have spoken to. When I see her myself, she weeps when I arrive, and weeps when I leave. When I told her I was coming to get her and bring her down for a visit she sounded wary but excited, but who knows if she even remembers that conversation? Can I cancel with impunity? Can I just fly up for one of my solo visits? Is that enough?
Which decision will do the least harm? The most good?
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Beth A.
Writer to the Stars
Douglas Moran
Sparking
Susan Mihalic
Steve Klingaman
Salon.com
Comments
Who is this visit for?
Ask yourself, am I doing this for her or for me? For her or for my children? Because she'd really enjoy the trip and get something out of it, or because it'll alleviate the secret guilt of being happy and normal and going about your life while your mother's memory and personality fragment?
People slipping into dementia still appreciate love. They don't appreciate confusion and chaos and the unfamiliar and the unexpected. If you - in all honesty - picked the latter choice for the questions above, make it easy on her and go up there, solo or with one or both of your children. She may not remember the actual events of going to your house, but the confusion and dislocation and unfamiliarity will linger.
But do get her and you and the kids together if you can swing it. It will be good for them too.
Bless you.
I used to be a long-term care ombudsman, and dealt with this dilemma all the time. I have had times when staff/administration at facilities have told the families of residents that they could no longer take Mom or Dad out in the community any more because they were just too agitated after a trip shopping and to have lunch someplace nice with the family. Sometimes the resident remember the trip very fondly, but not the agitation. Sometimes the resident did not remember the trip at all, or only vaguely. Sometimes the family reported that Mom or Dad seemed to always have a wonderful time on the trip to the outside. Sometimes they said they, too, noticed the agitation. I always asked the questions I asked you above in order to help come to a resolution.
So what would your Mom have wanted? Do you think she will have a good time? It doesn't matter if she forgets that she had that good time when someone asks her about it. We do not know yet clinically how memory works, but my heart tells me that it would be wise to hope that the Alzheimers and dementia patient still writes down memory, but that the real problem -- at least in the early and intermediate stages -- is accessing those memories. (I now care 24/7 for my own mother who has dementia). Maybe she'll enjoy the visit and not be able to recall it when you phone her in the evening a week later. But maybe when you mention it, her subconcious will access the fond memory while she's dreaming??
The toughest call of all might be believing that, even though slightly, moderately, or even severely compromised as our loved ones decision-making may be, sometimes Mom will give you the best advice of all.
(God willing all of her old and new selves and what has come of it will be fictionalized in my soon to be completed novel:))
Some Alzheimers patients do indeed get 'nicer' and 'sweeter' as a result of the disease. Just consider it a blessing and get on with accreting good memories to counteract anything historical your angry with which they no longer have an accounting of. My mom used to be nice, now she is a whirling dervish of invective and rage, but I just honor that because, what are you gonna' do? One of the things about Alzheimer's is that it reduces a person's ability to not avoid doing things our higher minds would normally preclude. In your Mom's case, it's being nice. In my Mom's, it's screaming at the neighbors, the dog, the cat, the t.v., the blue jays burying acorns in the garden. In a rest home, maybe it's retired Pastor Jones removing his pants and running through the courtyard, or Alice stealing underwear everytime she hears her next-door neighbor leave her room. It's an odd kind of three-ness where the concept of rules no longer applies.
My grandmother, whom I also cared for during Alzheimer's, was a total crank. She was increasingly sweeter the worse her disease-state progressed. But boy, if she went febrile, watch out! And her memories -- or significant portions of it that she had trouble normally accessing -- would just roll out of her, until the fever broke.
Enjoy your time with Mom. Make sure the kids do, too. Because SHE will, even if she forgets.
I admire your courage for doing it 24/7. I don't know if I could. Peace.
The travel/change of locale is disruptive - to everyone. As a caregiver, you become familiar (almost proprietary) about the quirks and "isms" that are "normal". Taking her out of that, is disruptive to everyone - you seemingly start all over again. We should really consider doing a separate section on OS just about people like ourselves who face this daunting and often thankless task every day.
Thank YOU for giving me a place/a post to think that I am "normal" in these unusually cruel circumstances. I am a non-breeder (excuse the term) and I often wonder where I might end up and in whose care if this horrible illness chooses me as its victim. Perhaps this is the reason I choose to be the caregiver. Insurance that someone might care enough about me if I face the same fate...
We are ALL here for you.
Let's keep an open dialogue. It's tough, it's dirty, painful and tiresome. At least, we have each other........
Bravo for being so brave.
If you can handle it, it would definitely be worth visiting and maybe even bringing her to visit you, so that you and your children can have the memories of those moments.
When we cleaned out my mother's house, we found she had kept EVERYTHING. Every card we had sent her, every magazine, every Sunday New York Times magazine, receipts for things she no longer owned, estimates for catering for our weddings (twenty something years ago), files and files of articles marked "to read some day," and so on... We had bags and bags and bags of trash. It was mind boggling. I have an essay about it coming out in an anthology this spring. It took my sisters and I days and days to get the house ready for sale. And yet, the house from all appearances looked fine (we had been visiting it for years (it was the closets and basement and nooks and crannies and file cabinets and so on that were stuffed chock full). And the tchotckes! Oy. And photographs and duplicates, boxes and boxes full. So I know, I know.
Kudos,
Greg
If the trip would not be physically demanding for her or emotionally difficult for her, then take the extra steps you'll need to take and bring her for a visit.
When I read your comments about how your mother "used to be" I knew I was reading the words of a sad co-experiencer of endless years of an extremely difficult mother, if not unwell and certainly unpleasant, often impossible to understand .
Your OWN mental health and that of your children and grandchildren is ALL that matters now... read that sentence again! Repeat it out loud!
She will never ask forgiveness much less beg for it...she will never admit the hurt and damage she has done...actually at this point she can not.
My brothers and I not only "have been there" we ARE there! The day to day stress of it all caused our father's death! He just gave up.
It has taken us three and a half years to see that he made his choices and was co-dependent to a great extent , always trying for peace and "calm" with her the 60 years they were married... Yes, "Wow!" is right....a lesser or perhaps a stronger? partner would have left long before.
My brothers and I finally decided not to let our own health be compromised ...it wasn't overnight nor was it easy...we "co-incidently" each had a health crisis around the time period that showed us what was happening!
So now she is visited when WE are up to it and when WE can manage it..she is fairly local so that helps but we no longer revolve our lives around HER!
You will not get the personal gratification from her that you need, and you will feel worse. You are NOT a bad daughter. That is not even in the calculus here.
Be WELL, look to the future! Hold your children and grandchildren close! Teach sobriety and good relationships by example!
You are a survivor , take yourself OUT of the sufferer role into which you have been put by HER CHOICES long ago! YOU ARE FREE!
That deserves a Hallelulia !