Hello Peeps!

lizziepooh

Just a check in to introduce yourself and meet fellow peeps.

Despite any differences we have, we are all sharing the same experience and it bonds us in ways that people do not understand and can never understand unless they experience it themselves.

My name is Liz. I found this place a couple of years ago and without it, I would have been lost. I would still be trying to reason with my mom instead of taking measures to save her from herself and so much more damage could have happened to mom because I did not understand what was happening.

This place has been a lifesaver to me in many ways. The people here that contribute matter. Their experience helps us all.

And all of us contribute to that. New, old, hardily heard from, all the time heard from, sometimes always, sometimes never… 

So check in, introduce yourself or reintroduce yourself. Just joined or been here for years. Tell us whatever. But share. This place is special and needs to be cultivated. It would be nice for everyone to meet everyone.

Say one thing you like about this place and one thing you dislike. Or just say one thing.

Hiya, my name is Liz and I like to talk. Like a lot,

jfkoc

It is good to hear from you!

Stuck in the middle

Hi, Liz.  I'm Carl and I talk a lot too.  

There is about a million years of experience on this board.  No matter how unusual a question is asked, someone has been there before and can at least suggest some things not to do.  And, usually, some things that might be worth a try.

June45

Stuck in the middle wrote:

Hi, Liz.  I'm Carl and I talk a lot too.  

Carl?? Strange, you don't look like a Carl.  I had you pegged a William or a Robert; you know as in the well known poets.  

The4thOne

I like your energy, Liz, and agree 100%!

Jo C.

Hello; I am J.; I have been part of this Message Board since I think, 2006.  My experience:  My mother was diagnosed with a behavioral variant of FTD; a step-dad with Alz's (both at the same time,) a MIL with Alz's and a GMIL with Alz's.

I am also an RN who initially worked clinical areas and as a supervisor of such units, but then served as Administrator of Patient Care Management at various med centers.  I also did QI consulting on the side for HH, Hospice, ancillary depts., physician offices, etc. 

Despite my clinical experience and advanced degrees and having somewhat worked with caregivers and patients who had dementia in the acute hospital setting - when dementia entered our personal lives - all of that more or less went right out the window!  BIG DIFFERENCE when it is in your own home and not in a multiple staff supported hospital environment with three shifts of professional help.

I had to fly by the seat of my pants like everyone else as I made my way up the the learning curve gaining knowledge where the rubber hits the road so to speak.  I sought knowledge like someone was paying me to do it - I read, read, read and then read some more.

It was the wonderful people here as well as the Social Work Care Consultants at the Alzheimer's Assn. Helpline that made all the difference and helped me keep my head above water.  The experiential wisdom on the Forums is priceless and was so very helpful.

This is a  wonderful,soft and safe place to be where you and I will be undertoood and all of us in support of one another.

Thank you to the Alzheimer's Assn. for providing this place that has meant and done so much not only for us, the caregivers, but that has also made a very real difference for our Loved Ones.

J.

Mint

Hi Liz,  I like to talk too.

AnaMary

Hello; I am Ana.  I am new to the group and to supporting someone with dementia… I do not know where to start, so I am learning. I look forward to making new support relationships in the group

Iris L.

I joined the board years ago because I had memory loss and I feared it was due to Alzheimer's Disease.  I have been through a lot.  The wonderful members here, both patients and caregivers, also the Care Consultants, basically saved my life!  As it turns out, I don't have Alzheimer's  Disease but I still have memory loss and other challenges.  I was a pediatrician in my career life and I was a caregiver along with my brother for our mom with cancer, so I have a varied experience.  I realize there is little constructive help in the outside world, so I want to help where I can, as I have been helped.  

The message boards are great.  I wish members could get more use out of the three Chat Rooms.  They can chat in real time and relieve the isolation and loneliness that is intrinsic to the world of dementia.

Iris

GothicGremlin

Hey there -- I joined shortly before you did, Liz, so I'm of that vintage, and only a medium talker.   

This forum was recommended to me and I'm so thankful I followed the recommendation.  I knew zip about Alzheimer's (or any dementia) before I came here.  I read everything I could get my hands on (including The 36 Hour Day and Understanding the Dementia Experience), and many, many threads here.  I feel like all of those things have helped me to avoid some of the more common pitfalls that we all run into - like, "don't argue with someone who has dementia", or learning how to redirect. Walking in the door here I didn't know that redirecting was a thing.

I also am of the view that this place needs to be cultivated, it truly has been a lifesaver.  I'm not really sure how to "cultivate" though - maybe somehow through the "Musings" forum? We all have dementia in common, but we probably all have happier things in common too. 

Amymv

Hi Liz,

I joined the forums back in 2004 when my mom was diagnosed with Alzheimer's.  I came here more in the beginning, but life got busy, and I wish I had used the message boards more. 

Sadly, my mother passed away in June of 2020.  I miss her terribly.  I wanted to find a way to offer encouragement to those in the thick of it, so here I am.  I hope in some small way I have been able to offer support. 

Thank you!,

Amy

Ginsamae

Hi Liz, Ginsamae here in Virginia.  I joined the forum in 2019 when MIL moved in with us - she had been living on her own and it was no longer safe for her to be on her own. She's diabetic (not insulin dependent) and wasn't taking her medication; nor was she eating the way she needed to be eating. We quickly discovered that her memory issues were more severe than we'd been led to believe by other family members and we finally got her in to see a neurologist in summer of 2020...only to be told that her brain shrinkage wasn't enough to definitively say she had dementia/Alz. However, her mental abilities were and are quickly deteriorating and she has started to show signs of occasional incontinence. 

I'm one of those occasional posters...but I lurk here often seeking answers to questions (which I mostly find), comfort in knowing I'm not in this alone, the occasional kick in the rear from posters who've travelled further down this road than I, as well as sharing the occasional chuckle MIL provides me and my moments of frustration when things get tough.

DH and I have handed the primary caregiving to his Sib #1 and spouse as we prepare for some much needed down time and also to prepare for the birth of our first grandchild in a couple more months.    I will still lurk here, but probably won't be on as often. Instead, I'll be cuddling with the little one.

End-of-rope

Hi!  I joined the board almost a year ago when I was, as my screen name points out, at the end of my rope.  I cannot stress enough how much it helped me not to lose my mind.  I was dealing with my mother's Alzheimer's diagnosis after a long time of her indescribable aggression, delusions, and paranoia, while my step-dad had undiagnosed short memory problems.  I had not had previous experience or knowledge about dementia or memory problems.  In the middle of the pandemic I had to move my mom blindly to a memory care facility due to her behavioral problems, and had to have my step-dad picked up by his children to take care of him as I had no POA to make decisions for him.  Because of the lockdown, I couldn't see my mother for months and could only hear her complaints about everything not knowing if what she was saying was true or not.

I found comfort and help here. I learned from every post and comment, and was given invaluable advice, especially by the person that suggested the Validation Method.  It changed my life.  This board has been a real blessing to me.  I can't say I'm out of the woods because there's no such thing with Alz, but I'm leaning more towards the middle of the rope than to the end.  Thanks to all who take time to share their experiences and give advice to others that are just starting this painful road.

Arrowhead

My wife was diagnosed with Alzheimer’s 5 years ago at the age of 61. I think she may be getting towards the end of Stage 5. I took early retirement to take care of her. As I read these posts, I learn about others who have had it a lot rougher than I have. My wife has always loved people and she still does. Her demeanor has not been as negatively affected like so many others have. I have friends who, unfortunately for them, have been through this themselves. They have been helpful. Friends and family members who have not had to deal with this themselves are all very supportive. They try to be as understanding as they have the ability to. I have been very blessed through all of this. 

I have posted on this forum and have benefited from the experiences of other. I don’t respond to other often, but that I hope I have been helpful when I have.  

rzrbaxfan

Hi! Jason here.  Pushing 50, wife, 2 daughters banded together taking in-home care of my almost 83 yo Mom who is stage 6.

What I love about this site:  I feel alone in my mom-care journey.  Sister and her adult son (mom's first child and first grandchild) never check on her.  Niece and cousins visit some.  But the hard stuff is all me with support from my wife and kids.  Some do this passive aggressive crap of offering things that I don't need, but won't do the one thing I do need...which is to visit her and let my ears and mind get a break.  This site makes me feel not alone. Just hearing that other folks are on similar journeys and feel what I feel helps me tons.

There is nothing I don't like about this site.

Music of all kinds holds me together.

Hatedementia

hi Ana... I remember when I was exactly where you are...  depending on the stage and type of dementia you are dealing with ...  your needs can be different.    Every person with dementia is different. .. it is hard because there is no absolute answers, usually.   If you realize that early on, it will make the road a little easier to navigate.   Try to learn everything you can...  my best advice would be not to argue, go along as much as you can, be their advocate where they live and try to not take things personally especially if there is aggression and anger or combative behaviors.     Best wishes!     These forums and even the 24 hr 800 ALZ number can be a true lifesaver.    Use them and support groups are out there and helpful to some....

Hatedementia

Hi Jason.     You are a GREAT son to take this on ... it's a tough job.  Your mom is blessed.  It does feel very lonesome and makes some LONG days that seem endless.  I have been told that no matter how many siblings there are, one usually ends up doing majority, if not all, of the care.   I was an only child so I didn't have to be mad because there was no one but me and my husband....  it was hard and we had an angry/combative/aggressive LO ....     I hope you are able to get relief some and get out ...  it is a very hard job you are doing.     There were days when I felt like I needed to lay on the floor and had no energy to even possibly get UP...  but, we always do get up and we are stronger than we think we are.     If you can possibly swing it, get a sitter to get out a little bit ... if financially that is not possible reach out to a service with the health department or see if the state medicaid has a help at home service for people at risk of nursing home placement....    it is so so hard and I get it.    Even exercise and working out can help to deal with some of the stress and difficulties of caring for one with dementia.   Hang in there...  you are doing a great service to your MOM.    She is blessed!

msimko

Hello Everyone.  I am brand new to this forum and been reading through alot of threads in this past week since joining. My fiance and I have been caring for his mom who has mental disease (schizophrenia, bipolar, anxiety, and depression) and newly diagnosed with early stages of dementia. Our wheels are spinning greatly right now. Trying to take care of her, trying to finalize all the wedding plans for the wedding in November, and me trying to find a job as I am one of those on the unemployment line.  It has been very emotional and physically draining. I see many folks speak about the book "The 36 hour day". This was recommended by her doctor and I did purchase it and began reading.  We are all in this together and I love how the association has provided this forum for us to come together and support one another.

lizziepooh

jfkoc wrote:

It is good to hear from you!

Did you ever think you would think that so easily?

Love it. It is good to hear from you, too.

lizziepooh

Stuck in the middle wrote:

Hi, Liz.  I'm Carl and I talk a lot too.  

There is about a million years of experience on this board.  No matter how unusual a question is asked, someone has been there before and can at least suggest some things not to do.  And, usually, some things that might be worth a try.

So true, Carl. There really is that much experience here and it is invaluable. So agree.

But Carl, I think I prefer Stuck. It has kind of stuck.

lizziepooh

The4thOne wrote:

I like your energy, Liz, and agree 100%!

That is awesome. Tells us a little about yourself. What would you like us to know about you? What do you want to know about us, if anything? Just wondering, feel free to share or not share. No pressure.

lizziepooh

Jo C. wrote:

Despite my clinical experience and advanced degrees and having somewhat worked with caregivers and patients who had dementia in the acute hospital setting - when dementia entered our personal lives - all of that more or less went right out the window!  BIG DIFFERENCE when it is in your own home and not in a multiple staff supported hospital environment with three shifts of professional help.

The thing I always admire about you most, JoC, is your compassion. You have this breadth of personal experience and procedural experience but it takes true compassion to be able to say the same facts, the same contact name and numbers, the same regulations over and over but to the individual that you are speaking to, you say it as if it the first time you are saying it. And they are more likely to hear what you are saying because of it.

That is a gift not a lot have. I truly admire it.

lizziepooh

Sayra wrote:

Hi Liz,  I like to talk too.

Oh yeah, prove it.

lizziepooh

AnaMary wrote:

Hello; I am Ana.  I am new to the group and to supporting someone with dementia… I do not know where to start, so I am learning. I look forward to making new support relationships in the group

Nice to meet you, AnaMary. We look forward to meeting you more.

lizziepooh

Iris L. wrote:

The message boards are great.  I wish members could get more use out of the three Chat Rooms.  They can chat in real time and relieve the isolation and loneliness that is intrinsic to the world of dementia.

 

What are the three chat rooms? And who currently participates? Who do you wish would start participating more? When are they most active? Just wondering.

Nice to see you, Iris.

lizziepooh

GothicGremlin wrote:

I also am of the view that this place needs to be cultivated, it truly has been a lifesaver.  I'm not really sure how to "cultivate" though - maybe somehow through the "Musings" forum? We all have dementia in common, but we probably all have happier things in common too. 

I think we cultivate by just getting to know each other whichever forum that may be.

Like, I have always wanted to ask you about Goths so I ask you now. What does being Goth mean? If you had to distill it down to three principles or less, what would the common values be amongst Goth? Besides you and Abby from NCIS, I never met a goth so I have questions. Lol!

What does Goth mean? Besides clothes or appearance since I can see those, what defines Goth? Just wondering…

lizziepooh

Amymv wrote:

Hi Liz,

I joined the forums back in 2004 when my mom was diagnosed with Alzheimer's.  I came here more in the beginning, but life got busy, and I wish I had used the message boards more. 

Sadly, my mother passed away in June of 2020.  I miss her terribly.  I wanted to find a way to offer encouragement to those in the thick of it, so here I am.  I hope in some small way I have been able to offer support. 

Thank you!,

Amy

No, thank you! This is why this place exists.

lizziepooh

Ginsamae wrote:

DH and I have handed the primary caregiving to his Sib #1 and spouse as we prepare for some much needed down time and also to prepare for the birth of our first grandchild in a couple more months.    I will still lurk here, but probably won't be on as often. Instead, I'll be cuddling with the little one.

Awww. how nice to prepare for your first grandchild, especially, without needing to take care of their great grandparent. Kind of takes away from it all. 

I am glad you no longer have to deal with MIL. 

How has your husband been? Does he now see that mom needs more help or is he still in denial? Just wondering…

lizziepooh

To everyone that has posted so far and I did not respond to, I am sorry. I meant to but I am losing juice on my iPad and doubt I will be back again for awhile.

But I have a point about that. Don’t wait for me. I may start a thread and abandon it or I may be all over something. My point is that I am not consistent and my interest in something can’t be trusted.

But you all can be trusted. Talk to each other. Get to know each other outside of dementia. Don’t wait for me to ask questions, ask questions yourself. I am sure we all are curious about each other. I do not think I am unique in that.

There is a really great group of people here: seen and unseen, heard and unheard.

This is quite a place. It should be cherished.

Ginsamae

Hi Lizzie,

DH has developed HBP and his PC has given him 3 months to get it lower or he'll go on medication. He has come to see the light (so to speak) that his mother needs much more help than he realized - which is why we handed off to Sib #1 his mother.  They have been complaining that she's a lot of work and they aren't sure they can keep her, but we aren't taking her back for at least a year.

Thanks for asking!

Iris L.

lizziepooh wrote:

Iris L. wrote:

The message boards are great.  I wish members could get more use out of the three Chat Rooms.  They can chat in real time and relieve the isolation and loneliness that is intrinsic to the world of dementia.

 

What are the three chat rooms? And who currently participates? Who do you wish would start participating more? When are they most active? Just wondering.

 

Lizzie, there are two chat rooms for caregivers and one chat room for patients.  When I was chatting regularly years ago, mostly one chat room was used and a few patients did chat with the caregivers.  Mostly four to eight members chatted, although there were times that were very busy and some members broke off into one of the other chat rooms.  

Almost everyone complains about bring isolated and not being able to get out as much as before.  Also, one's usual friends and family don't understand.  Chatting in the evening was a way of visiting for a few moments with people who understand without having to leave the house or get dressed.

Members chatted about non-dementia related things, although dementia was discussed too.  Some members sipped adult beverages.  There were virtual parties.  There was light talk and laughter.

Any member can begin a chat.  At that time, there was chatting every evening.  The evening times were spread out because of the four time zones.  We also had members from the other side of the world chat with us, because evening for us was morning for them.

The Chat rooms are not like Zoom or Skype, because they are in writing.  But they still can serve a need.  I needed the chat room when I was desperately lonely.  The other members saved me!  Chatting online is a free, needed service for caregivers that is not readily available elsewhere. 

Since there are fewer members chatting now, I suggest that anyone interested posts a message in the daytime stating, "I will be in the chat room tonight at 5 pm PT (for example)--please join me,"  in order to let other members be ready.  Be sure to state the time zone.  Wait a few moments for others to arrive.

Iris