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My first day on AlzConnected
abeautifulwaytolive
Posted: Sunday, September 6, 2015 7:48 PM
Joined: 8/17/2015
Posts: 86


Today has given me many mixed messages.

When I posted about tips and tricks to help my mother, I got a lot of great answers (thanks all!).

However, on adding to posts to give ideas that differ from taking all rights away from pwd, I felt a lot of negativity. Why?

I was saying how I treat my mother as a person and that I am honest with her, and I don't skirt from the truth, which was answered by: "telling them the truth is cruel" and that everyone is different and so I just shouldn't talk about what really helped my mom. This was really confusing, because the original poster had asked about how to talk to the pwd.

Then again, when I tried to explain how pwd shouldn't have their licenses revoked solely due to diagnosis, I was received by more negativity, and about how my mother doesn't know that she's incompetent. When my mother is probably a better driver than myself!

I have great insight and ways that I would love to help care partners and pwd alike, but I'm not sure if this is what I am looking for if it's just going to be greeted with negativity.

I have this radical idea that pwd are still people, and if that's too progressive of an idea for this forum, I just don't know what to think (especially since this is the Alzheimer's Association).

I was testing this site out to see if it would be a good medium for my mother to socialize on (as socialization is good for pwd) but if the MO is that pwd aren't people and are second class citizens (which my mother already feels like people treat her) and if this site isn't really for or beneficial to pwd, I will not recommend this to her.

I'm sorry if I sound like I'm ranting, but I just had such high hopes for this forum, and am confused if this is really what is supposed to be experienced here.

Thank you for your time, and again sorry if it seems like I'm ranting.


Michael Ellenbogen
Posted: Sunday, September 6, 2015 8:49 PM
Joined: 11/30/2011
Posts: 4036


To a certain point you are right. I would not let that stop you. There are always going to be many sides of thins. Some people can handle it and as I have learned many cannot. That should not be a reason to no participate. If you don’t like what someone say just let it go and don’t come back. I believe a lot of the negative comments come from anger that has built up and they just need to let some out. I know I have at times. Better on the board then our love ones.


abeautifulwaytolive
Posted: Sunday, September 6, 2015 9:21 PM
Joined: 8/17/2015
Posts: 86


Thanks, Michael,

Like I said, it's my first day, and I don't want to jump to conclusions. I was just baffled by the amount of negativity that was directed towards pwd, and how easily it came to most people to just take their humanity away (or at least the things that make us humans)! And then in the same breath claim that they know what's best for my mother (or at least better than I do). *sigh* hopefully it was just a bad night, and not so many people are actually like this. As long as I know my mother is in good safe hands with me, I guess I can't complain.

Thanks, Michael for being supportive


Lisa428
Posted: Sunday, September 6, 2015 11:56 PM
Joined: 12/5/2011
Posts: 795


Dear Itsabeautifulwaytolive,

You are 100% correct about people who have dementia/Alz are still people. They need to be treat with love, patience and respect.

I am so sorry you met with such negativity. I'm sure it made you feel awful.

Most of the people on these message boards are wonderful, caring people who want to help. They like to give it and receive it!

Many are very knowledgeable and willing to help.

I have YOAD and was a caregiver to my Mom with AD who passed away almost 5 years ago. It was a very difficult time.

Please, don't stop posting. We are here for you and your LO's.

We have a 24/7 Toll Free Help line @800-272-3900 if you need additional help.

You may want to contact your local Alz Assn for help, support group meetings.

Please, Hang in there and let us know how you are doing.

Peace and Hope,

Lisa


Mimi S.
Posted: Monday, September 7, 2015 8:25 AM
Joined: 11/29/2011
Posts: 7027


Hi,
I do hope you tell your mom about this site.

Those of us in Early Stage have a lot of life left in us.

The driving is always a hot topic with two definite sides. I no longer get upset. Some folks says if theWD get stopped or has an accident and the diagnosis come us, the insurance will be invalid. I don't know.

My feeling is that advice is OK if a person is in mid-stage or beyond. Are there new dents on the car? Have you driven with your mom? In these days when folks are fortunately being diagnosed at an earlier and earlier stage, they can often continue to drive for ages.

abeautifulwaytolive
Posted: Monday, September 7, 2015 8:51 AM
Joined: 8/17/2015
Posts: 86


Thanks for being so supportive

Lisa,

It did make me feel awful, but I was also just really baffled and I'm sure I just came on at the wrong time. I'm so glad to hear that there are good people on here I'm sorry to hear about you and your mother, but if you are anything like my mother, you wear it well and try your best not to let it stop you!


Mimi,

I totally get the driving issue. I think that we should monitor our LO and assess their driving abilities before jumping to conclusions.

My mother has already set her own restrictions (i.e. not driving new places, only driving on her own for short distances when she's completely confident, etc.). She's actually a fantastic driver, and much better than myself! So if there were any random bumps (there aren't) then it would probably have been my own fault! I'm a great driver, but she's had much more practice.

It just mainly scares me that if they make a law that pwd are to have their licenses revoked, then people who suspect aren't going to get a diagnosis until it's too late and/or something serious happens. And so they won't get help that they probably would've benefited from.

And to further that, if someone got a diagnoses at stage 2, and they were still fully capable of driving, but they can't. vs someone who doesn't get the diagnosis until early stage 6, and they probably shouldn't have been driving, and were a hazard to other drivers. I just don't think it's fair to make that call based on dx. They are still the same person as before the dx, and that's where I stand. If they are good drivers, let them drive.

I'm like that with a lot of things my mother does. As long as she has that skill, let's let her preserve it as long as possible. How she says it is "If you don't use it, you lose it."

Thanks all for your care and support


RachelO
Posted: Monday, September 7, 2015 9:20 AM
Joined: 6/22/2015
Posts: 324


Hi, I wanted to add a welcome as i am glad you have joined the conversation. I have only been around a few months myself but I have already witnessed a few rounds of huffing and puffing between various people. I think this is mostly caused by the diversity of people here as well as the difficulty of communicating mostly anonymously on a computer screen.
My own mother has not touched a computer in years so she does not participate here. And now she is in a memory care unit where she can't really operate silverware, toilet paper or a toothbrush.
I am lucky because my mother is mostly smiling and she does some compulsive chewing on her hands but she has never needed any kind of psychiatric medication or care. Many LOs here are coping with tremendous upsets and problems.
The PWDs that participate here are a special group in that they are well enough to write here and interested to do so. My mother went down this road with her mother and she was terrified and horrified as this came for her; she quietly got her papers together but she was secretive and private and then the time for this type of discussion was gone for her.
So lots of different strokes and different folks. I am thankful for this message board and interested to follow the various conversations. I say try to cut everyone some slack because we are all here dealing with a very stressful and problematic condition.
Rachel

abeautifulwaytolive
Posted: Monday, September 7, 2015 9:44 AM
Joined: 8/17/2015
Posts: 86


Rachel,

Thank you so much for your insight. I'm so happy to hear that your mother is happy and doesn't need psych meds!

I am so happy to hear everyone's opinions, but I can understand how not everyone is the same. I am so happy that us care partners and pwd can get together and all talk amongst each other.

I don't hold anything against people nor their opinions, but that doesn't mean I will follow suit. I think we all gotta figure out what works for our families, and I am so happy that people are happy and willing to give their insight and opinions to help each other out.

I'm also glad we have a support group, as it is a very scary transition between your parents being strong and independent to they now need you to care for them!


nomemo
Posted: Monday, September 7, 2015 12:43 PM
Joined: 3/21/2012
Posts: 439


Hi! and Welcome! I am a newly minted 60 year old, live alone....no children. i was diagnosed with behavioral variant frontotemporal degeneration @ 2008. slow but consistent progression I have nursing services come in one day a week; that will more than likely be increased to at least twice a week in the very near future. I also have an aide who comes in one day a week, funding provided by local alzheimer's foundation. If I get accepted for Medicare in my state (Pennsylvania, where I was twice denied), I hope to increase aide services through Office On Aging.

as what has been said many times, "when you meet one person with dementia, you meet one person with dementia"....as you have probably seen by now, care and treatment is such an individualized matter; however, this forum is a great place to come to see what has worked for others and what might work for you. it's a great place for resource, encouragement and support. a place to share your concerns and, well, just VENT!

and whatever has worked for you might work for others! it goes both ways so please share!

again, WELCOME!!!

Blessings to you!

abeautifulwaytolive
Posted: Monday, September 7, 2015 1:46 PM
Joined: 8/17/2015
Posts: 86


nomeno,

thank you for sharing your experience! I agree with that each person with dementia or no is different, and what works for my mom may work for no one else. But I still say things that work for her in the case that it may really help someone else.


TheSteven
Posted: Tuesday, September 8, 2015 9:06 AM
Joined: 10/11/2014
Posts: 167


After my ALZ diagnosis they recommended that I take a driving assessment so that if I get into an accident then it will prove that it is just an accident. People who do not have dementia get into thousands of accidents per day so by getting an assessment, if we get sued we can have proof that we were competent to drive but just got into an accident. It does cost money for that but you do have to pay people to take the tests.

For me it was a two part thing. At Spaulding medical they do the computer assessment to see if my response time is OK. We make sure we can tell the difference between green and red and can hit the brake in time and we drive along a road doing something like a video game and make sure we don't hit any cows and such. I never saw the cow.

If you pass that test then you make an appt with a driving school. Mine was Central Mass Safety Council where my son took his driving lessons and skid school lessons. If you get into drunk driving accidents or kids with accidents in their first 6 months they have to take more coursework there as well. The driving test is tougher than the kid's driving test because they ask you to remember instructions like take the right turn at the third light and then take the highway exit north. It is a half hour + test where you drive along neighborhoods and highway and follow directions similar to GPS but with sometimes longer time frame of remembering directions like if you stopped to ask for directions from somebody.

I was able to pass that and drove for a year before the doctor would assess you to see if you need to get another driving evaluation. Passing the evaluation gave me great confidence. It didn't stop me from making mistakes later on like making a turn onto a highway instead of a road when I was trying to follow the GPS instructions to get to the YMCA a month later, but at least I was able to show them I can remember some instructions. The GPS just is confusing sometimes and the distances are not exact. It also will prove that you are still capable of driving. If you can't pass the tests then it helps you to self assess if you should drive for your own safety and those others on the road.




The_Sun_Still_Rises
Posted: Tuesday, September 8, 2015 9:44 AM
Joined: 7/24/2015
Posts: 3020


Hi Steven,

Thanks for describing the driving test. My daughter and I were thinking of creating an adaptation to the standard driving tests given to us to make them more dementia friendly. Like pointing in the direction they want us to go rather than saying turn left up there.

I would love input and ideas if anyone would like to share.

Thanks.