Today’s blog post is a little different. I am here asking for your help. Yes, you.
I am talking to you.
I am asking you to submit a question. Obviously, the question should be limited in scope because I don’t know everything–or so I am often reminded by my husband. I can answer questions about Alzheimer’s and related dementias. Heck, I can even answer questions about The Bachelor, which you know I am keeping in my closet if you read last week’s post.
However, that’s about where my knowledge ends. I would avoid questions about remodeling kitchens, how to avoid backing into your garage door frame, and general cooking. Those are topics I am have shown that I am not qualified to advise on.
In future weeks, I will focus on answering questions. Maybe I’ll answer one in a post. Maybe I’ll answer six in a post. I haven’t decided on a format yet. However, find that box below where it says “LEAVE A REPLY” and write me a question. If you would rather send me something anonymously, you can email me at firstname.lastname@example.org. Sometimes I find reader emails in my spam folder months later, so put “Dementialand” in the subject line and I promise I won’t miss your email. I’ll be like Dear Abby with a slightly more modern haircut and without the bright red lipstick.
This Dear Abby thing isn’t new to me. I wrote an advice column in my high school newspaper. In four years of high school, only one person wrote me for advice. (And I remember the letter vividly. It was from an anonymous kid who thought he might be gay. My friend Lory who is a counselor helped me write a response. I still think about that guy and hope he’s doing okay. If you’re out there, please tell me you’re okay.)
Full disclosure to my high school peers….I made up the rest of the letters. Yep, I asked myself for advice and then responded. And this is the very first time I’ve fessed up to this. I thought I’d go to my grave with that weighing on my heart, but it feels good to get it out there.
Sorry, Muscatine High School. I deceived you. But really, it was sort of your fault for not writing me any letters!
Readers, do not make me repeat this behavior. Shoot me some questions!
10 thoughts on “Playing Dear Abby in Dementialand (And My Overdue Apology to My Muscatine High School Peers)”
Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).
I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.
All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.
I couldn’t stop laughing about you writing and answering your own letters! I’m not laughing at you, I’m laughing with you. Oh the things we do in life….. 🙂
When things aren’t going well and you know a trip to the doctor is needed, how does the caregiver do this when the person suffering says nothing is wrong and refuses to go see a doctor?
How about the Emergency Room in Dementialand? I do realize that all patients are different, but what can we expect to fail, and in what order? Are there any commonalities? Besides UTI’s what are common ailments to watch for and what can we do to make the ER experience more tolerable for both patient and caregiver? We have made 3 trips since November for blood pressure issues, a UTI, decreased kidney function, and difficulty urinating. Is this the norm and even if it isn’t, how can he ER experience go smoother?
How do they diagnosis dementia or Alzheimer? Is it just symptoms, tests, what? You have probably answered this before but I just started following you and it is hit and miss. What are the tell tell symptoms?
How do I respond to people who say, “…but he seems fine, I don’t notice anything wrong.” I know they mean well and they probably don’t see what I see because they don’t live with him and see the day-to-day losses. My husband has FTD(bv) (frontotemporal dementia with behavioral variant). He has not handled finances for 4-5 years, has lost several phones, key fobs (which are expensive to replace), his wallet, and on and on. His latest loss is his wedding ring. With each loss he becomes more angry and then despondent. But within ten minutes, he is back to “normal” and has forgotten the significance of each loss. His doctor has told him no driving “unless it is to a place where you have been a million times” and I am becoming more concerned about even local driving as he has begun to make turns onto a one-way street (the wrong way!). I have also noticed that he takes long roundabout routes to get where he is going – he can’t see the failed logic in his reasoning for why he drives longer routes.
So how do I respond to people who mean well but are absolutely clueless. I sometimes say, “Yes, we are blessed that the disease progression has slowed for now.” But the disease progression is picking up and these people make me CRAZY!!!!
LikeLiked by 1 person
Can you please make suggestions about saying goodbye after a visit with a nursing home resident who is suffering from dementia? Farewells often bring residents to tears, frustration, and anger when their visitors must leave. I’ve seen people avoid the goodbyes by a number of different methods, but this method leaves a resident with more confusion.
My husband is incredibly competent socially. He also can walk the dog, make up the bed, go to the close by drug and grocery stores (walking-he hasn’t driven in 2 years). He is unable to do finances (for the last 5 years), organize, plan or carry out any task that is more than one or two steps. Other than the tasks above or what I plan, he sits on the couch doing puzzles on his phone. His short term memory is very impaired. He can dress himself but wears the same clothes for days and showers only when reminded. I make all decisions for us, and he seems uninterested in any details. He is generally content and easy going. He has been diagnosed MCI due to Alzheimers. Is this dementia or is he still in MCI stage?
LikeLiked by 1 person
What an amazing opportunity. Thank you!
1) My husband has no awareness of any of his deficits. He is in the moderate stages of dementia. He struggles with anxiety and anger when things are not going smoothly. He really shouldn’t be driving any more. For the most part, if he insists on driving, I am in the car with him, keep it to back streets, and close destinations. Any discussion about going to one car has resulted in a lot of anger. I haven’t dared to suggest that he not drive, as I know he doesn’t perceive anything is wrong. I hate to pin this one on the doctor, because I want him to have a good, trusting relationship with her. I know there are no easy answers to this, but any suggestions?
2) This question is more out of curiosity. My husband is very fatigued, and sleeps way more than he used to. There are no medication changes, and he is on the same medications he has been for years (low dose ramipril, Lipitor, and hydrochlorthiazide). If we go for a very short walk, he is “exhausted” and will complain of his leg muscles being sore. All labs are within a normal range. Does anyone know the cause of increased fatigue associated with dementia?
Thanks so much; what a great idea! Almost as good as a visit with you in person 🙂
LikeLiked by 1 person
My spouse is incredibly sensitive about having memory loss – finds it humiliating in the extreme, being one of those people who’s strongest point was her intelligence.
I find myself “shielding” her all the time, and arranging things behind the scenes, so as not to cause her to be upset by bumping into this reality (of the dementia) any more than absolutely necessary.
I intend this as a kindness, and also as a stress-reduction strategy for her, but it is also, by far, the hardest part of caregiving.
So, my question is, should I be more open with her about the diagnosis?
Anything you have to say about this would be welcome.
Comments are closed.