Don't read if you're sensitive

Iris L.

The following is my opinion. Don't read if you are sensitive to an individual's sincere opinion.

Crushed has a reputation for being blunt. I recall his thread about becoming INSTANTLY POOR when dementia is diagnosed. However, I have been observing that a lot of responses are blunted, not blunt. I would think that members need to know that their LO's brain is damaged, and that they need to pull their heads out of the sand and take control.

I read a lot of, for lack of a better term, wishy-washy responses. "You need to stop your LO from driving!" "You need to get control of the finances!" "Or suffer the consequences", which have been posted about many times on the message boards. This is what I would like to write on a lot of posts. It seems to me that frequently members are being coddled, instead of being wakened up. I post often about the PWD having anosognosia, but a lot of caregivers have anosognosia about their dementia situation. It won't get better just by venting about it on the board. They have to act. Things get worse, then they vent again. This is disturbing to me. This is disturbing to me, because in my mind, the purpose of this time is to prepare for the future--to avoid or to lessen complications. You can't cure it but you can manage it. People vent about feeling they are failures because their LO has dementia. In my mind, they are not failures because of a disease process, but could be failures for not taking control.

Is this too harsh?

In my mind, they don't have to be failures--they can be warriors. If it were me, I would prefer being a warrior. But that's me.

Iris

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Whyzit

Right on Iris. Being helpless is dangerous. Caregivers have to be in charge or else they are enablers for whatever happens. Thanks for your post.

Quilting brings calm

I agree Iris. People do try to be tactful here and other people don’t listen to advice. However sometimes people do try and they get stopped by the sheer reality that they can’t legally prevent a person from being a danger to themselves. For example, every day there are articles about a mentally ill person ( one of the few that have violent tendencies) that does something to themselves or others. People blame the family yet the family kept getting turned away every time they asked for help or reported the danger - because their LO is an adult. There’s a member on this board whose LO keeps getting released from the hospital, supposedly cleared to be home alone. Yet they aren’t safe there. Look how long Buggsaroo has been trying to get her spouse placed.

The state I live in does not allow family members ( or anyone) to request driving evaluations, or pull a license of a LO. Only a doctor or police officer can do that. Yet neither of those professions want to do that. I cannot legally disable my step-dads car( that’s vandalism or property damage) or have it removed from the parking lot( that’s theft). The only way I will get his keys is to literally wrestle him to the ground ( that’s elder abuse plus I’m not physically able to do it) - and he’s got spare keys somewhere. I don’t have legal POA for him and he won’t give it to me. The staff at the AL are not empowered to do anything either. What I can do is offer to do the driving and I do so as often as possible so that his driving is so minimized that he only puts gas in his car every few months.

A spouse can usually get away with disabling the car because they are a co-owner.

Ed1937

You're right on target, Iris. Quilting said "other people don’t listen to advice". That's one thing I don't understand. We've had a few people ask for help, but when they get excellent replies, they just don't want to hear it. But the good thing is that they're the minority of members.

loveskitties

Thank you Iris for being straight forward in your thoughts. I agree wholeheartedly.

I went thru this while Mother was caregiver for Dad with dementia. She would complain or express worries, but would never take advice or consider options. It was a struggle.

Everyone needs a soft place to land, but if you have a problem and ask for help, then you need to consider the responses and take action. Inaction, gets you no where but in a deeper hole.

Thanks for starting this topic.

Sunshine2024

My husband’s neurologist told me I am a bulldog and will be just fine working through disability insurance process, etc. I thanked her and said if that’s what I e got to do that’s what I’ll do. Not rude or disrespectful. I ask for what we need and push if I have to Always with a smile on my face

☀️

Just Bill

That's what I am trying to do with my wife. Just keep moving forward. Death will come in it's own time. For now just keep living and finding reasons to continue. As she loses more and more of who she is, she is still in there with lots of life left to live. Just not how we planned or prepared for. Every day is a new challenge, get any bad stuff in the rear view mirror as soon as possible. Depression follows me wherever I go. I force myself to be happy and grateful she is still here albeit in a severely reduced mental capacity. I have adopted a real stoic philosophy about this whole situation. This is what I am here to do and don't whine about it. Just keep working, working out, meditating, breathing and handle anything that comes our way. I am very lucky I can bring her to golf and work she is very high functioning and cooperative. I have said this before and I will say it again happiness is in the moment. Depression is in the past and anxiety is in the future. Happiness is in the right now. Three years ago I was a completely different person, now I feel like a scarred up old war horse. There is satisfaction in being resilient and I wouldn't have known the depth of my resilience unless I was tested. There is a satisfaction that comes with survival that is for sure. Never ever give up living to your fullest whatever that may be. Never ever give up and lay down. Just keep moving forward.

Jeanne C.

Iris, I agree that taking charge is the only option. But, it's all fresh enough that I still vividly feel the panic, confusion, and being overwhelmed. I've grabbed the bull by the horns NOW but 6 months ago I was floundering. And, frankly, I'm figuring it out as I go. It's not easy to be the decision maker. The medical stuff is confusing (and I work in medical publishing!). Until you get the right help and advice you have no idea how to manage this. And we can use cute words like "fiblet" but it takes a major mental shift to be able to start lying to your partner or loved one, even for their own sake. So, yes, bluntness is needed. So is compassion (which I know, from reading your posts, that you also share). You seriously inspire me - I want to be a warrior too.

RickM

"but a lot of caregivers have anosognosia about their dementia situation"

Anosognosia or denial? When the person you love, a parent, a spouse, a sibling, whoever, starts showing signs of dementia it is terrifying. We all know that. How can this be happening? Our brains tell us that this cannot be. A lot of us have to vent before listening. Maybe it takes more time for some of us to understand that, first, we can't cure it, and, second, we have to try and manage it, or delegate it to someone who can. Once you understand that you have to try and manage it, you, more or less, have to take control of another's life, essentially, strip them (ok hopefully only limit them) of their independence. (I am continually amazed at how many caregivers have not stopped their loved ones from driving and try to justify this. "Oh they've only gotten lost once or twice". YIKES!!).

How do you find the will to take control from someone who has nurtured, guided, supported, been your partner, your mentor, your lover, maybe all of these, or, even worse(?), none of these? You have to change the whole way you look at them, how to maintain and nurture your connection to them. You're living in Dementia Land now, and if you don't take control, then you better bail because if you don't take control you may go down with the ship in the sea of denial.

Put your life jacket on and get some help.

And, yes, that SUCKS!

Joydean

Thank you Iris for this thread and for telling like it is! This road we are all on called dementia/Alzheimer’s is not an easy one. But no one has ever said it would be. We come on this board wanting to learn from others and I can honestly say I have learned a lot. Some use words I was not familiar with, but I took the time to look them up and that helped me. Something’s that have been mentioned, well when it happens you know what they meant. ( example: bathroom explosion; well I know what that means now!) again I thank you for your honesty. One of the many things I admire about you!

M1

Iris i think your post reflects your medical background. Its always astounding to me that folks will come to a doctor for a professional opinion and then argue or deny about the advice offered-but we've all seen it happen! And in fact that's one of the things i found interesting about practice, was observing the different ways people would interact. Everyone's learning curve is different, and there are so many factors that play in. for instance i always found with a new diabetic, it always took quite a while to get them up to speed on living with a chronic condition. Same with dementia i think. So I don't know, i think there's different strokes for different folks.

harshedbuzz

You are wise, Iris.

I agree that certain members here are blunt; they don't just call a spade a spade, they call if a f%#*ing shovel. I have occasionally pointed out that someone's hair is on fire; it isn't always appreciated. A few others (I think Jo C.) offer similar thoughts but warmly and gently. I often wonder if the more empathetic approach is misread by those prone to denial as being less urgent than it was intended.

I have often described my mom has that frog set to boil on the stove. I tried for a decade to get her to take my concerns to dad's doctor. "It's a normal part of the aging process" became the mantra when I tried to talk about this. As a result, she nearly died with him as her advocate. He day-traded away $350K and made other unsound decisions in the midstages of the disease before he forgot how to use a laptop.

That said, I have issues with the whole warrior imagery as it relates to death and disability just as I throw up in my mouth a little when someone calls the parent of a child with special needs a "mamabear". No one is going to beat this organic process at this point. I like the role described more in the context of collaboration-- advocate and partner.

HB

jfkoc

Thank you Iris!

Michael Ellenbogen

You are so right. You know I tell it like it is and that is why I get the arrows thrown at me. 

Crushed

I do try to ask if people need emotional support or legal/technical advice . (even lawyers can learn )

Other wise I agree

On the following quote

That said, I have issues with the whole warrior imagery as it relates to death and disability just as I throw up in my mouth a little when someone calls the parent of a child with special needs a "mamabear"

My brother had special needs and my mother made mama bears look like wimps

My granddaughter has special needs and her mother , my ice hockey playing feminist assistant attorney general has "Mother Bear' shirts.

  WHEN the Himalayan peasant meets the he-bear in his pride,

  He shouts to scare the monster, who will often turn aside.

  But the she-bear thus accosted rends the peasant tooth and nail.

  For the female of the species is more deadly than the male.

Michael Ellenbogen

Crushed are you sure you can learn? I am not so sure. Maybe you and I can have a conversation some time and actually speak with each other. Especially about these new drugs.

tigersmom

I read a really interesting book on this topic recently. It is called "Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver and the Human Brain", by Dasha Kiper. She is a clinical psychologist who cared for a dementia patient for a year as a young woman. Some parts of it are kind of technical, but in a nutshell, she takes on the neurological reasons why caregiving is so difficult. It seems the healthy human brain is kind of hardwired to project the same attributes to those we care for. If you've ever wondered why you keep arguing or trying to reason with a person with dementia, it turns out there are actual neurological reasons. In our brains, not theirs! Not saying that Iris doesn't have a point -- she does, as do all the people who responded. But this book was kind of an eye-opener for me.

harshedbuzz

Crush said"

That said, I have issues with the whole warrior imagery as it relates to death and disability just as I throw up in my mouth a little when someone calls the parent of a child with special needs a "mamabear"

My brother had special needs and my mother made mama bears look like wimps

My granddaughter has special needs and her mother , my ice hockey playing feminist assistant attorney general has "Mother Bear' shirts.

I am the mother of an adult son with autism, ADHD, GAD, dyslexia and an alphabet soup of acronyms. My son is the thinly veiled "Teddy" in one book on autism spectrum disorders and quoted in another. I was encouraged by the authors to work to build a village for my son by working collaboratively with those whose help we needed. Granted, I did familiarize myself with IDEA and seek out top notch people in a highly regarded district, but it worked for me.

My son is an employed college graduate and an all-around terrific human being.

M1

thanks for sharing that HB. I know you've mentioned him before. Makes me want to read the books.

I have a good friend and colleague, a pediatrician, who has a son with Down's syndrome and she has taught me so much about parenting neurotypical vs. neuroatypical kids. She will say herself she is a better doc by her parenting and a better parent by her medical background. She is an invaluable resource in our work with the state Medicaid program because not only does she understand the medical issues but she knows what it takes to care for a child with special needs. There are so many chronic human conditions that are heartbreaking, just like dementia is, and there is so much about the brain we still don't understand.

Quilting brings calm

I just typed what is probably the most direct post I have done on these forums since I joined. At least I think it is. I feel bad about it because I think it’s harsh but I’m really worried about the poster’s situation. I don’t feel much like a warrior though. Definitely not like a nice person either.

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Quilting brings calm

Victoria - thank you.

Crushed

https://alzconnected.org/discussion/comment/169884#Comment_169884

Michael I will be very blunt

I respect your right to your opinions, but I have spent an entire career examining scientific evidence used in regulation ESPECIALLY in the context of the FDA I was offered a position in that precise area by the FDA , I declined. I lectured in Berlin Germany in 1981 on scientific evidence for the department of the Theory and organization of Science Last year I gave a lecture celebrating a 4O year collaboration. Ive taught Health care risk management, been an ethics Advisor to researchers at National Cancer Institute and published in medical journals . Ive been a full Professor since 1991in two different departments based on my work in scientifi evidence and regulation. I continue that work to this day .

I do not have to satisfy YOU that I can learn . I demonstrated that long ago to world experts. the question for youis can you step outside of your admirable advocacy work and actually study the science

My wonderful wife has end stage alzheimers. She was a physician I have been devoted to her care. I would have gladly paid perosnally ofr any drug that would actually have done her any good. I consulted top neuroscientists in making my decisions, not industry flacks or self interested Quacks .

RickM

Tigersmom,

I read that book also. Makes a lot of sense. Does it explain to me why I have done a lot of the stupid and insensitive stuff that I have done? I’m hoping so. But sometimes I feel like it is giving me an excuse. Damn, this disease is hard.

Paris20

Iris, I agree with you but I have a slightly different take on the dementia caregiver journey. When my husband was first diagnosed with AD eight years ago, I read every new post every day. I wrote in, often at my wits’ end looking for information and support. I got both on this forum. Many of us have been married for many years. Before diagnosis, relationship history often dictated our expectations of who does what and how we react to crises. However, no crisis prepares us for dementia. I often call it a bizarro world, where all we’ve known is changed.

When I read posts from the newbies on this forum, I sometimes want to reply with “Don’t do that!” “It’s not denial, it’s anasognosia!” ”You must find a way to take the car keys away, permanently!” Then I remember how I felt in the first few years. I needed the support, the kindness, PLUS the information, the how-tos based on others’ experiences. Dealing with dementia is never a one-size-fits-all process. Much of it is trial-and-error. Those little kind helpful hints, expressed with empathy, can get us through the day.

Dutiful One

I feel the same way, Paris. I agree with others in this thread,too, but your response resonates with me.

For me, posting about my situation with my husband makes it real. If I admit something, I have to face it. Maybe that's what keeps me from posting much.

I've already dealt with setting up wills, estate planning, taking over finances. Now I feel like that's taken care of, I'm just trying to cope with day to day decisions.

While I don't want or expect to be coddled, I think I need to learn to practice better self care. Maybe by doing that I won't feel so emotionally empty and needy, as I so often find myself feeling. I don't want to come across as frozen with fear and indecision.

Thank you all for being there. You are all valued!

Crushed

Many years ago my wife and I struggled with infertility of unknown cause. Every test came out fine. And it was certainly not for lack of trying. Sometimes she needed technical advice sometiems she just needed a hug verbal or otherwise.

You do the best you can to help