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making it easier on your care partner by understanding anosognosia
Iris L.
Posted: Sunday, December 20, 2015 7:04 PM
Joined: 12/15/2011
Posts: 18357


Care partners have a tough job.  From my reading of the boards, it seems like the problem is the patients give their care partners a hard time in many cases.  I believe if the patients were AWARE of what was happening with them, they would go along with the changes that the care partner requests.

For example, the care partner requests to handle the patient's medications and put them in a weekly medication container.  The patient wants to handle her own medications, but always forgets, or takes too many at one time.  Chaos ensues.

If the patient were aware of the need for medication consistency, and the need for assistance, there would be no problem.  

Many patients develop anosognosia at some point.  I wonder if all of us patients are aware of this characteristic of dementia.  I do not know how to avoid or prevent it.  But if the patient and care partner can discuss it now, they can also discuss possible solutions for upcoming issues.

A lot of the caregiving stress, from what I see, is the development of hostility over conflicts in care issues.  Perhaps, knowing that agnosognosia is the reason for the conflict may help to alleviate the conflict and avoid or lessen the hostility.  

What do you all think?  I do not have a care partner so this does not apply to me.

Here is an explanation of anosognosia.  I hope it can stimulate discussion and prevention of conflict.

http://alzonline.phhp.ufl.edu/en/reading/Anosognosia.pdf 

 
Iris L.

 


Michael Ellenbogen
Posted: Sunday, December 20, 2015 8:39 PM
Joined: 11/30/2011
Posts: 4384


I am very aware of my looses in my behavior and skill sets. For now. While I know I am that does not mean my care giver will know. I am also not sure when that time happens I will know. There is to many time I want to blame myself for something and it was real my caregiver that was at fault. They are so quick to blame us thinking we are the one that always forgets or screws up. Personally I believe most caregivers will do what is in their best interest rather than ours. This board is a key example of that. They are so quickly to take our rights away and dignity for what they will say is our safety.  I am unsure of when that line is crossed but many I actually speak with all feel their caregiver does not really speak to them about it and that is the big problem. I can tell you mine dose not and I welcome it. I on the other hand lost the ability to do the speaking on my own on this issue because I don’t want to burden her with more problems. One the one hand you are lucky to not have someone but on the other it is a serious challenge and you will never see that side of it. There is lots of guilt that comes with it. I sometimes think it may be better off and leave to save them from all this crap.  After hearing some of the stores here you know that it’s not so bad.

 


Michael Ellenbogen
Posted: Sunday, December 20, 2015 8:49 PM
Joined: 11/30/2011
Posts: 4384


 One more thing to add. I believe many of those here would come out of there shell more frequently if they had the proper support and not continuously remained of how they cannot do things. We lose so much self-esteem that we end up falling into that category because of depression. Not always the dementia.

 


Hopenow
Posted: Sunday, December 20, 2015 9:00 PM
Joined: 12/17/2015
Posts: 32


This is a reply to Iris. 

I am a care partner/care giver. I have read many posts by you and found them fascinating. You think "out of the box", the Dementia Pioneers .   I am on a this site because you recommended that care givers could learn more by listening to the patients. I have listened to you which right now is easier than to listen ,truly listen by suspending all judgement, to my husband. It's just so hard. When we do have talks about how he feels and we share our thoughts and feelings, it's the best. At these times I feel the closest to him in all our 38 years together. More than ever we need to be a team. Also for the first time I have to help him. I never really had to help him. My husband was always so self sufficient.  Actually, I looked at him helping me, even though I was also quite independent.  

What I want to ask you is - what is Best Practices. I don't really get it. I tried looking on the internet but I don't know your interpretation.  My husband is on The Exelon patch. I think it's helping but other times I get confused and afraid it is harming him. 

Anyhow I hope you get back to me.  I will read more.


Hopenow
Posted: Sunday, December 20, 2015 9:23 PM
Joined: 12/17/2015
Posts: 32


To Michael

I am a care partner/caregiver.  My husbands name is also Michael. I am so glad I read your post You are right. We point out too often what our spouse does wrong stripping away self esteem. The irony is that when my Michael was well,  the two of us would spare like this and I stupidly think I can still do this.  I don't realize the harm I am doing him   Thank you for your writing about how you feel.  

Barbara

 


Iris L.
Posted: Monday, December 21, 2015 1:39 AM
Joined: 12/15/2011
Posts: 18357


Michael and Barbara,

I was married at one time.  Unbeknownst to me, my memory and cognitive lapses were a big issue to my husband.  But he only mentioned it once, at a doctor's visit, to ask my doctor if memory loss was a factor in lupus.  Only after we had been divorced for several years, did he let me know how much my memory lapses impacted him.  Ultimately, these lapses were implicated in our divorce.


At the time, I knew I had memory lapses, but I did not know how bad it appeared to him.  We never had a chance to talk about it.  It might not even have made a difference, because I had anosognosia about my lapses at that time. I probably would have discounted what he said.  Being discounted does not bode well for a marriage.  I had never heard of anosognosia, like most people.  Knowing what I know now, things in my marriage would be different (I hope).


Michael, you say you don't want to burden your wife.  Well, being able to communicate better and understand better is not a burden.  It is a blessing.  What we face in the world of dementia are not things we can merely read about, we must experience them, and eventually have an "Ah-ha" moment about them.


My aim in bringing this up is not to discuss all the caregivers on these boards, but for patients to be able to discuss with their own care partner.  It helps if both parties are on the same page, so to speak.  The whole point is to prevent conflict, not to promote conflict.


Mimi is always reminding us to focus on our strengths, not just think about our weaknesses.  This is something we all should pay attention to.  We do not have to fall into the trap of what the outside world thinks of us.  We already know what they think of us.  But they do not know us on this board.  We are Dementia Pioneers!  We have a new paradigm of living with dementia.


We do not need to feel guilty.  We need to have good self esteem.  I too, fell into a deep depression at one time, a few years ago.  But I said to myself, "if I do have dementia, I am not going out like a victim!"  I decided I would do whatever it took for me to have a better life, whether I had one day left, or twenty years left.  I am going to hold my head up high, and carry on, as long as I can.  I am going to live independently, for as long as I can.  I am not going to worry about what outsiders think of me.  They are no-nothings, anyway.

 

Barbara, I started a new thread for you about Best Practices.  Look for "Best Practices for Hopenow."

 

Iris L.


llee08032
Posted: Monday, December 21, 2015 8:29 AM
Joined: 5/20/2014
Posts: 4408


It must always be realized by carers, loved one's and family that it is the DISEASE, the DEMENTIA, and the BIOPHYSICAL BRAIN CHANGES and NOT the PWD that is causing the problems.

Expecting the PWD to control the problems caused by the biophysical changes is like expecting a cancer patient to control the spreading of their cancer. 


BillBRNC
Posted: Monday, December 21, 2015 9:09 AM
Joined: 12/2/2015
Posts: 1018


llee08032 wrote:

It must always be realized by carers, loved one's and family that it is the DISEASE, the DEMENTIA, and the BIOPHYSICAL BRAIN CHANGES and NOT the PWD that is causing the problems.

Expecting the PWD to control the problems caused by the biophysical changes is like expecting a cancer patient to control the spreading of their cancer. 

 ===========

 I think there are many caregivers who understand this in theory, but get caught up in the chaos. I think there are many caregivers who never understand this. I think there are blessed few un truly understand and live it. I don't blame the caregiver any more than anyone can blame the person with Alz. It is a terrible disease that afflicts the person who has it and all them around them. It just plain sucks.



Michael Ellenbogen
Posted: Monday, December 21, 2015 9:36 AM
Joined: 11/30/2011
Posts: 4384


 There are some caregivers here that deserve awards for what they do. I wish we had a way to honor them. May be then the rest may get the message on who to follow. I can think of one at the top of the list. Hisdaughter. Luckily she no longer has to go on as he is finally at peace.  


Iris L.
Posted: Monday, December 21, 2015 2:01 PM
Joined: 12/15/2011
Posts: 18357


Rather than continue to complain about how bad living with dementia is, people can do something about it, if they choose.

Iris L.

 


Unforgiven
Posted: Monday, December 21, 2015 2:06 PM
Joined: 1/28/2013
Posts: 2659


The problem with anosognosia is that people with it don't know they have it.  And that means that even when they sense they have deficits, they can't sense the extent of their deficits and the accompanying stress it puts on a care partner.  It turns us into the hired help rather than 'partners' when we have to scour out a burned pan or replace the credit card for the fifth time.  Sooner or later we forbid cooking and take away the credit card over the PWD's objections, because each lapse is a fresh new one in their mind and they don't recall the previous times.  We do talk about it -- the LO simply forgets the previous times we talked about it.

I'm not sure that the discussion is something the PWD is capable of initiating in the middle to later stages.  I wish it COULD be a partnership, with the LO listening to the extra and unnecessary burdens they place on us by refusing to give up a task or responsibility.

Michael, why shouldn't we caregivers protect our self-interest?  Isn't our job already hard enough?  Must we repeatedly clean up messes that didn't have to be messes in the first place?  Has our own self-esteem and mental health suddenly become secondary to yours?  I would really hope not. 


rellajet
Posted: Monday, December 21, 2015 2:52 PM
Joined: 10/15/2013
Posts: 382


Michael said:

"There is to many time I want to blame myself for something and it was real my caregiver that was at fault. They are so quick to blame us thinking we are the one that always forgets or screws up. Personally I believe most caregivers will do what is in their best interest rather than ours. This board is a key example of that. They are so quickly to take our rights away and dignity for what they will say is our safety.  "

 Imagine that, you sound just like my mother who is completely unaware and in denial that she has a cognitive problem while trying to use the TV remote to make a phone call. Or step on the brake thinking its the accelerator. Or leave the pot holders in the oven along with the roasting pan to catch on fire.I  think that your experience with this disease has made it impossible for you to respond without bias or prejudice.  




BillBRNC
Posted: Monday, December 21, 2015 3:23 PM
Joined: 12/2/2015
Posts: 1018


Look, I'm still relatively new to all of this, and I don't think I've gone too far over the edge yet. I don't think it is right for either group to blame the other. It is what it is, and it sucks. What is being described here and over on the caregiver board is why I have no intention of living at home when I can't be left alone safely or allow my wife to have a decent life. I've told her, and I mean it, that I want to be put in a memory place where she can visit as often as she wants, but still have some life of her own. There is no reason for Alz to destroy two lives, when one is more than sufficient to pay the piper. This is why I can't wait to hear from the experts in April. I don't care for what I've been told by my local docs, and they are probably right, but I still want to have the most solid view I can get. Plans need to be made, and plans need to be carried out. I just hope Christmas with our son and his family at a resort (they in condo, us in hotel) will work, at least that is the plan. If it doesn't, then so be it. Thanksgiving didn't work too good, as was their visit in August a disaster, but hope is hoping. Merry meryy.
BillBRNC
Posted: Monday, December 21, 2015 3:29 PM
Joined: 12/2/2015
Posts: 1018


Oh, and I wish somebody could tell me why I seem to get so much worse when there is stuff going on all around me, noise, stress confusion, chaos, pressure, making choices, thinking much, whatever the heck other than just peace and calmness. I probably won't be getting a lost of it for Christmas, but I'm giving it a go.
Iris L.
Posted: Monday, December 21, 2015 7:26 PM
Joined: 12/15/2011
Posts: 18357


BillBRNC wrote:
Oh, and I wish somebody could tell me why I seem to get so much worse when there is stuff going on all around me, noise, stress confusion, chaos, pressure, making choices, thinking much, whatever the heck other than just peace and calmness. 

Answer:  People with dementia and cognitive impairment cannot tolerate stuff going on all around us, noise, stress, confusion, chaos, pressure, making choices, thinking too much, and whatever the heck other than just peace and calmness.

This is just how it is.

Iris L.


Iris L.
Posted: Monday, December 21, 2015 7:40 PM
Joined: 12/15/2011
Posts: 18357


Unforgiven wrote:

I'm not sure that the discussion is something the PWD is capable of initiating in the middle to later stages. 

 

Unforgiven, I think you are misunderstanding.   I wrote this post to us patients who are on this board.  Clearly, we are not in the later stages and most are not in the middle stages.  

It is about potentially avoiding just what you experienced.  

My idea is for patients to take the initiative in discussing with their own care partners, who probably is their spouse or adult child.   

My idea is for this discussion to happen now, rather than later, because later may never come.

I thought the topic might be easier to discuss with an accompanying visual, i.e., the article.


Iris L.



AggieLinda
Posted: Tuesday, December 22, 2015 12:56 AM
Joined: 12/17/2015
Posts: 3


Again, I am trying to gain insight from someone with AD.  Please help me to be a better daughter.  Can you provide any insight to what your day is like?  How has it changed?  How can I help?
alz+
Posted: Tuesday, December 22, 2015 7:10 AM
Joined: 9/12/2013
Posts: 3608


Iris L. wrote:

Rather than continue to complain about how bad living with dementia is, people can do something about it, if they choose.

Iris L.

 ***************

 If they are ABLE to choose.  Poverty and lack of access to meaningful help are not always within the range of how we can make our lives better.

  This explanation of agnosia helped me see there are things I am aware of and things I do not know about myself, and I am grateful I do not know the whole ball of wax.

 definition: 

AnosognosiaThis is the inability to gain feedback about one's own condition and can be confused with lack of insight but is caused by problems in the feedback mechanisms in the brain. It is caused by neurological damage and can occur in connection with a range of neurological impairments but is most commonly referred to in cases of paralysis following stroke. Those with Anosognosia with multiple impairments may even be aware of some of their impairments but completely unable to perceive others.
**********
   I think I might like to be in a place where I lived with protected freedom and have my family visit me. The Beatitudes place sounds like a dream vacation to me. Not many of us want to treated like unruly children, would prefer company of LIKE MINDED people + animals and art.

love to all and ENJOY the season in a way that gives you peace and happiness.

last reminder to check if you can still SMILE. if not, practice, and use it liberally!



Michael Ellenbogen
Posted: Tuesday, December 22, 2015 7:16 AM
Joined: 11/30/2011
Posts: 4384


 I hear you loud and clear Iris. While I can speak to anyone else in this world I can no longer do it with my spouse. I absolutely don’t know why. I have this fear for some reason. If she were to ask me I would share anything she would want to know. I have even made comments that just ask and I will tell you all about the dises and what I am dealing with. I am never asked.  I have come from being a good communicator and taking the lead to just a follower for so many things. I so wish I knew how to change that as I struggle everyday for not starting conversations and more.  Some F....ing think in my mind has broken and I just can not do it. If you want to talk about frustration with it when you can figure out why. The sad part I am able to see most of the effects from this disease and can remember most of them.  


BillBRNC
Posted: Tuesday, December 22, 2015 8:30 AM
Joined: 12/2/2015
Posts: 1018


As usual, I spent most of last night awake, or at least I thought I was awake, but who really knows. Anyway, I was thinking about something I've been thinking about for a couple of weeks now. Why is it that sometimes I seem to have less problems, even when things outside remain more or less the same. I keep thinking some of this is in my mind imagination, but I then consider the details and realize that I have all the problems I have had over the past several or more years, only that there seem to be periods when they lessen, then periods when the worse, then I see there is really a relatively smooth progression over the years. But the fact remains that there are times when I actually feel like things are improving, but to date they have only gone back to the downward line again.

Anyway, I got up this morning and tried to put together a time line from the first time I had a noticeable problem up to now. This covers about 6 to possibly 7 years of time. It started as a very mild memory thing, then problems reading, then problems being sharp and successful in my job, but not a big deal at the time. Then I got my heart problems, and I stopped paying attention to my cognitive problems, other then I noticed that my problems continued to slowly get worse across the board. At some point a couple years later, I really started to notice behavioral things like agitation, anger, striking out verbally and such. Then I started have real issues communicating when I was trying to explain something anything, or trying to follow someone else who was trying to explain something. Then I noticed all of these problems getting worse. I was really having memory problems, getting confused while driving somewhere, forgetting what I was doing, and all the other things, only worse. Then I really noticed problems with handling financial things, like I saw my checkbook and didn't hardly recognize that I could have left out so much and messed up the rest. Then I realized things were really getting bad, so I sold our house and moved into a condo to help simplify things. The process of selling and buying nearly tore me apart. I told my real estate agent a dozen times that she had to take care of me and keep me from screwing up, and to quit asking me to read and sign things. Then I started having real trouble with family visiting or any type of group deal where things would normally get a little crazy, only I was getting really crazy, so crazy I got rid of my guns in the house. I was afraid, really fearful of what was happening. This went on for possibly a year when it was really much worse, then recently it seems to have backed off a few steps so that the problems are much less severe, but still there, although the explaining things or understanding things have stayed somewhat bad, as have my personality things and not being able to handle noise, chaos, confusion and such.

It seems like overall over time there have been phases, followed by some bettering, followed by phases with new problems and worse old problems, then some better, and so on. I keep thinking about invisible lines and that I pass one every so often. I really worry about the next line and what will happen. Or am I just imagining myself into having more problems.

Heck, I just don't know anymore. Does any of this sound the same for others.

 

 


BillBRNC
Posted: Tuesday, December 22, 2015 8:32 AM
Joined: 12/2/2015
Posts: 1018


Oh, and it seems like a heck of a long time has passed and I still can type these long messages and appear somewhat normal to my friends and such. How can I be so with it, but yet so not with it, all at the same time. Just makes no sense at all to me. Makes me wonder if my real problem is just going crazy.
Michael Ellenbogen
Posted: Tuesday, December 22, 2015 8:59 AM
Joined: 11/30/2011
Posts: 4384


 I feel jut like you Bill. I keep wondering what is next. If I even will still know that. They say you get to a point that we become so bad that it becomes good again because you no longer remember any of all this. Not sure that is good. I hope to check out before that time. If I can remember and don’t screw that up.

 


Mimi S.
Posted: Tuesday, December 22, 2015 9:45 AM
Joined: 11/29/2011
Posts: 7027


Neurology Now, this months issue has a lot about dementia. Some things I agree with and some I don't What do you think?

http://journals.lww.com/neurologynow/pages/default.aspx


Iris L.
Posted: Tuesday, December 22, 2015 7:56 PM
Joined: 12/15/2011
Posts: 18357


alz+ wrote:
Iris L. wrote:

Rather than continue to complain about how bad living with dementia is, people can do something about it, if they choose.

Iris L.

 ***************

 If they are ABLE to choose.  Poverty and lack of access to meaningful help are not always within the range of how we can make our lives better.

 


I mean to discuss about potential problems now, while we still can discuss.  This has nothing to do with poverty or lack of access to meaningful help.  Everyone has a voice.  Let's use our voice while we can.

Iris L.

Iris L.
Posted: Tuesday, December 22, 2015 8:06 PM
Joined: 12/15/2011
Posts: 18357


Michael Ellenbogen wrote:

 I so wish I knew how to change that as I struggle everyday for not starting conversations and more.  




This is why I posted this thread.  To attempt to begin conversation.  I know it is hard.  My marriage broke up over the death of communication.  Can this be avoided in other marriages?  I truly believe so.

People are fearful.  Not talking produces secrets.  Relationships cannot thrive with secrets.  

 I like this saying, "It is better to light a candle, than to curse the darkness."

The way to approach a difficult issue is to take baby steps.  Take baby steps indefinitely, until you can take a regular step.  I have done this, many times.


Iris L.



Iris L.
Posted: Tuesday, December 22, 2015 8:14 PM
Joined: 12/15/2011
Posts: 18357


Bill, what you describe sounds familiar to me.  I always think, having difficulty with financial affairs and paying bills and using the checkbook is a key marker of cognitive impairment.  That happened for me in 2003.  I had more trouble in 2007.  Things had gotten worse, but have steadily improved since I began Exelon patch and Namenda in 2009.  


I call us Dementia Pioneers because we are the first generation of patients who are pro-active in our own treatment.  No researchers are studying us, so I do not rely on reports about people who are not following Best Practices.  I decided for myself, if I have dementia, I am not going out like a victim!  I am going to fight for myself!  So here I am.


Iris L.


The_Sun_Still_Rises
Posted: Tuesday, December 22, 2015 9:04 PM
Joined: 7/24/2015
Posts: 3020


AggieLinda wrote:
Again, I am trying to gain insight from someone with AD.  Please help me to be a better daughter.  Can you provide any insight to what your day is like?  How has it changed?  How can I help?

--------------------------------------------------------------------------------------

Hi AggieLinda,

Bless you for asking.  I don't have many answers, or all the words I used to have, but I have been working very, very hard to bridge our two worlds...in a way we can work together with our carers, and they can work with us...in more harmony than I have seen.  To in essence, come up with the answer this question. I am both a daughter who is the sole 24/7/365 caregiver for my mom, and a mom who is now diagnosed and stage 5 Alzheimer's...so I have some insight into both worlds.

In the beginning, when you suspect or know this is the diagnosis, but maybe they don't need so much help yet...I recommend coming close to your parent/s, getting to know them as people, getting to know their tastes in food, and music.  Learning what gives them meaning in their lives.  This information will be invaluable to you when your parent/s have progressed further in the disease process...when they can no longer tell you these things.

I also recommend working on your relationship with them.  Coming close, being an emotional support, understanding...and being on their side.  Many do this thing where they distance and parent and child become on different sides, I feel it is important to avoid that if possible.  I would try to develop a relationship where you can talk openly and honestly...in a way that your parents can feel comfortable sharing what they are struggling with, with you...or, share how the disease is for them.  What is it like mom, when you step over the rug like that?  And maybe she will share how she perceives the floor.  The more insight you can glean from them, the easier to anticipate their needs.

As a mom of (young adult) daughters...my hope is that they can grow up a bit, and let go of whatever was, and meet me in the now.  I hope, although I don't have words for (for them), that they will not linger in denial too long...and realize that the window on quality time with me is closing.  And, I have a very hard thing that I have told my own kids...and that is I personally, would rather they were not around as I enter stage 6 and beyond.  I personally do not want them as caregivers.  I want always to be just my daughters, and for me to just be their mom.  And I want them to remember me as I was.  Now, not everyone feels this way...but I do think that if it comes up, I hope children can understand...that we moms are wired to be there for you, to care for you...and not every one of us is willing to let that go.

As it seems like they may start needing help...I recommend, rather than asking, offering.  Hey mom, if you ever want help with anything, let me know.  And waiting.  Might be the hardest thing of all.  We all will struggle with things.  It seems to us like we should be able to do them.  And the struggle gets harder and harder...and then eventually too hard.  If you let people struggle with things, eventually it will be a relief when you offer to help...rather than something we just reject...timing is key.  Realize, it is very hard to accept help from one's children.  Again, I personally just want my daughters to be my loving daughters and nothing more. 

Also we have been diagnosed with a terminal illness...yet, it is treated very different than those diagnosed with stage 4 cancer.  People around us often shy away rather than come close.  And often our children and spouse begin verbalizing and showing (sad faces) of how hard it is for them...so we put our emotions on hold and try to nurture everyone else.   Every person who has dementia that I have talked to, and I have spoken to many, wishes they had emotional support from their family and friends to cope with their diagnosis...like you'd rally if we were diagnosed with cancer.  Letting us know that you will be at our side to laugh and cry with us, come what may...will go a long way with most parents. 

As things start progressing and you start waffling on do you or don't you step in...you might appreciate watching Teepa Snow and Dr. G. Allen Power on YouTube.  You might even appreciate them now.  The book, Dancing With Dementia written by Christine Bryden (a person with dementia) she writes so eloquently what the experience is like. 

You might want to think about therapy, just to give yourself a private space away from the goings on to process your feelings and come to the place you want to meet your parents at.  It may also help to have that support for yourself. 

I personally ask of the people in my life, that they view my diagnosis as though both my legs have been lost...give me rehab, help me find adaptations and workarounds, keep my spirits up...and rejoice always in what I can still do.  Indeed, I try to live in and celebrate what I am still able to do. 

The longer your parents can participate in things that give them meaning the better.  Socializing is important to continued function.  But it all depends if they are up for it.  As one stops driving, it becomes harder to stay involved with things that mattered...rides to those things would mean the world to someone who couldn't otherwise get there.  Indeed, that is the way I suggest starting to help.  As this takes place, they will build trust and begin to rely on you more...and this can be built on.  The more they trust, the more they may be willing to share and ask.  I view the role with my mom this way, gaining her trust to take over things she needs help with. 

I have gotten by for a long time with signs and some adaptations...it is something I appreciate the most help with, or have for most of stage 5.  I am starting to edge onto stage 6, so now I just need to find ways to sort of lean into my support team and let them start carrying me a little.  And I can tell you, that the closeness and love of the relationships...makes all the difference to me and makes it possible, for me, to let go of control.  Their love and compassion for me...makes it all a deep shared experience of love.   

When it gets much more progressed, you will need to choose your role in things...visiting loving daughter, or some level of caregiver...and hopefully all you did leading up to that time, will help you ease into that role. 

And a lot depends on where we are in the disease spectrum and what is affecting us, and also a lot depends on who is around us, and how they approach us. 

Anyways, I hope this helps.  And I hope you will keep asking, including asking specifics.  I hope the others will chime in and share their views and ideas. 

Lay the ground work is the most important thing I could say. 

Best of luck, and sorry about your parent/s. 


Iris L.
Posted: Tuesday, December 22, 2015 9:24 PM
Joined: 12/15/2011
Posts: 18357


A baby step might be viewing and discussing Mimi's video.  Have you all seen it?

One Step Ahead of Alzheimer's

http://www.youtube.com/watch?v=Q2w9LG3hMlU

Iris L.


The_Sun_Still_Rises
Posted: Tuesday, December 22, 2015 10:16 PM
Joined: 7/24/2015
Posts: 3020


Iris L. wrote:

Care partners have a tough job.  From my reading of the boards, it seems like the problem is the patients give their care partners a hard time in many cases.  I believe if the patients were AWARE of what was happening with them, they would go along with the changes that the care partner requests.

For example, the care partner requests to handle the patient's medications and put them in a weekly medication container.  The patient wants to handle her own medications, but always forgets, or takes too many at one time.  Chaos ensues.

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I don't think that it is so simple as that.  This is speaking as someone who both needs help with my medications and has workers who work with me. 

What I have read on here, is generally caregivers who see a problem and want to just take over and sort of force their idea of how to do it on us...to wit we usually reject this idea, as I think any normal person would.  What I hear you saying here, is that you think we would be more willing if only we were more aware.  Well, I am very aware (and still very articulate about what exactly I am struggling with regarding my meds)...and my experience is quite different from these two models. 
 
I take my medication 10x a day.  Unfortunately, no pill dispenser can cope with 10x a day...so that is out for me.  However, it has been offered to me by well meaning workers many times, and indeed, many standard solutions have been offered to me over the years for my dilemma with my meds...none of which would help with my particular situation or were even appropriate for my situation. 
 
And these standard one-size-fits all solutions are offered despite my having articulated with clarity my particular situation and struggle with my meds. So, I have had no choice but to reject their offers and wait for their understanding of the situation to catch up to mine...which sometimes it does, and other times I get shrugs and have to let those workers go.  
 
What I have needed, is for my workers to really listen to me as I explain what I am struggling with, and to understand the adaptations that I already have in place, and understand my thinking enough to offer me real solutions to my specific challenges.  To wit I have a lot of sympathy, patience, and compassion for my workers who are willing to attempt this. 
 
To cope with my growing brain dysfunction, I have needed to develop adaptations upon adaptations to help me to take my meds.  And as I have now progressed beyond being able to come up with any more, I need my workers to continue where I left off.  That said, I am the one usually driving that.   
 
To give a specific example, I lay my meds out on a shelf.  I used to know where I should be in the line at a given time in the day.  As I progressed, I couldn't.  So I needed to create a chart.  This worked for a while, then did not.  Then we needed to add to the chart, how many doses would be left after I took a certain dose...and this worked great for a while.  Then time became confusing and I couldn't tell how far away from 2 PM, 2:10 was...or whether it would still be ok to take them.  So I had to adapt and accept that that anytime in the 2 o'clock hour was ok, and I learned to disregard the minutes.  Now, my struggle is that the 8 on the chart is not the same thing as 8 doses on the shelf...and time is entirely meaningless.  And I am again starting to miss doses...and I do not have a clue what the next work-a-round is for this. 
 
It is not that I am not aware, and it is not that I don't want the help...because I am and do.  Just that the help needs to be appropriate for me, in my condition, and my situation. 
 
My carers need to meet me where I am (my mental space), rather than try to force me to go where they are (their mental space)...because I can't, and most of us can't.  We cannot operate from another's mental space...we can only operate from our own mental space. 
 
And whatever is put into place needs to make sense to us, in our mental space...if not, it will fail...and we will fail.  And I think many of us sense that, that when we are not given the necessary stepping stones to get there...and because we need our world to make sense to us, we have no choice but to reject it as more a matter of survival than anything else.  The caregivers are rocking our internal boat and we are trying to keep it from tipping over.  It is not so much a lack of awareness...but a lack of ability to communicate it in a way others can readily understand it.  And maybe sometimes, it is a matter of those working with us being willing to understand it. 
 
And where my charts got so messed up, was workers saying just give this new idea a chance.  The times I have done that, have been disasterous...because what was a concrete and solid working adaptation (in my mental space) became unstable and uncertain...and would never again be concrete for me.  It is like being adrift in the ocean and trying like everything to hang onto what we have...and bit by bit we lose bundles.  When workers just come and make a radical change, it is like they take our grip off of those things and all are lost...and few recovered.  It is very upsetting and trips our hard wired survival instinct. 
 
What I have been trying to tell my workers this year, and I will share with you too...is you have to stop counting on us to be able to carry you, because we can't...I can't.  It is a fine dance to come into another's mental space and meet them there.  Some can and do, and do it marvelously...others struggle with this.  But at some point in our progression, you can no longer expect us to take care of our caregivers...because it is an unrealistic un-meet-able expectation.  And it is not that we wouldn't if we could, it is just that we quite literally can't. 
 
So, to me, this issue is far more complicated than you present.  I think you need a person with the disease willing to share...and a carer willing to listen and take it in.  But those things have their own requirements and take time to build.  But when that happens, the most beautiful partnerships are born.  I think of Christine Bryden's husband, Paul...and Kate Swaffer's husband (who I am going to forget his name)...but look at them, and how they are doing it...and what that took...and how they are both (husband and wife) thriving.  It IS possible.  Just maybe not within the given model. 
 
Good discussion.  Let's continue to discuss, and see if we can't come to something...because the bridge between the two worlds is seriously hard to find...but it has got to be there. <3 

The_Sun_Still_Rises
Posted: Tuesday, December 22, 2015 10:22 PM
Joined: 7/24/2015
Posts: 3020


Iris L. wrote:

A baby step might be viewing and discussing Mimi's video.  Have you all seen it?

One Step Ahead of Alzheimer's

http://www.youtube.com/watch?v=Q2w9LG3hMlU

Iris L.

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Oh Mimi,

I am just so touched by your video...it is so nice to meet you.  You and your family are just beautiful. 



alz+
Posted: Wednesday, December 23, 2015 6:31 AM
Joined: 9/12/2013
Posts: 3608


rellajet wrote: 

Michael said:

"There is to many time I want to blame myself for something and it was real my caregiver that was at fault. They are so quick to blame us thinking we are the one that always forgets or screws up. Personally I believe most caregivers will do what is in their best interest rather than ours. This board is a key example of that. They are so quickly to take our rights away and dignity for what they will say is our safety.  "

 Imagine that, you sound just like my mother who is completely unaware and in denial that she has a cognitive problem while trying to use the TV remote to make a phone call. Or step on the brake thinking its the accelerator. Or leave the pot holders in the oven along with the roasting pan to catch on fire.I  think that your experience with this disease has made it impossible for you to respond without bias or prejudice.  

**********

 Just want to say thanks to rellajet for posting this. For all the problems I have had explaining what it is like to my Keeper (husband) I have never heard him speak to me as nasty as this. Or if he has had a really bad day and said something contemptuous, he apologized later. You really made me appreciate my situation! whew!

 *******

  Iris, I appreciate the difficulty in trying to explain what it is like to live with this illness and have tried to relate, as you suggest, to my husband and son and daughter. It was pointless to explain anything to my Mother or sister. Might as well bang head against wall.

 What you suggested I think was for us to open communication - and to explain how one day we might not be aware of not being aware?

 I am already unaware of some things. All my efforts of providing books, heartfelt email letters, discussions and so on were not needed for my daughter to understand and made little difference in everyone else.

 I felt reading the book "Learning To Speak Alzheimer's" was enough for anyone to get it but applying what the hear from us seems too hard for some CGvrs. They may have a braian malfunction which does not allow in that kind of understanding. 

 

 

 


 



alz+
Posted: Wednesday, December 23, 2015 6:36 AM
Joined: 9/12/2013
Posts: 3608


Michael - with all you know, all you have done, if your wife will not listen or respond what hope is there for the rest of us?

I thought handing over a book would be less - personally offensive - or defeat defensiveness but not true.

There are some people who just do not bend. The ones that do understand and listen, don't need an explanation?

 Frustrating - the only cure for that (for me) was to lower my expectations. It was expecting someone to listen and respond that was worse than them not responding.


Michael Ellenbogen
Posted: Wednesday, December 23, 2015 6:40 AM
Joined: 11/30/2011
Posts: 4384


I looked at the video and It good. I have many positive thought and much better them most. I was the outgoing on and no longer that person. It is extremely important for caregivers to take color of the conversation. I am not afraid to speak on a stage in front of 10,000 people on a stage and answer those questions.  If you saw a child lost what would you do ask questions and become a detective. Well As I always like to say I feel like I am becoming a 5 year old again. It is important for someone else to be nice and not upset ask ne the questions. While it worked for you and it changed with the drugs it did not work for me. I did improve but I have been declining. I have become afraid of most confrontation. I just cannot deal with it as it makes me so aggravated. I know I may not be describing it right but that is also part of the problem. If I have to spend time to think of how to say it or reword it I have lost the thought of what I wanted to say. That is why I just write what is in my mind. I find it very hard to write things a different way just to satisfy what others are looking for.  Hard to believe when I had to write convincing proposals to top management in order to make a case. So this is what caregivers need to learn that they must take this step.    


alz+
Posted: Wednesday, December 23, 2015 6:52 AM
Joined: 9/12/2013
Posts: 3608


Communicating that in future we may not realize we are in a different reality  -

forgot what was going to add. ok then.

If someone does try to convey...I think I am off base on what iris specifically is referring to so forgive me on that - but I try to convey what sets me off, for instance.

Over and over. It makes no difference. I get more frustrated, feel MORE anxious.

What helped me relax about this wall was to stop expecting it to happen. Lower expectations. And learned to FORGIVE MYSELF very quickly when I shouted back, slammed doors, called names, even unto having what is called a "Catastrophic Meltdown".

at that point in frustration and anxiety I could not shut it off. No Ativan, no walking, no writing to myself, no prayers, no phone call from daughter - nothing could stop it.

 It was horrific. I was inside a body screaming at my husband and wanting to stop but it was like hosting a separate entity within. RAGE from trying to get through to  him.

My daughter showed up, I smoked the Purple Kush cannabis, maybe 2 puffs and 5 minutes later the meltdown was over, I was filled with relief and insight, and have avoided further horrific episodes by using same. Wears off in 2 hours, no side effects.

Iris, thank you for sharing about the troubles you had when married and how you were unaware you had them. What was there any one else could have said to you at the time that would have made you aware?


The_Sun_Still_Rises
Posted: Wednesday, December 23, 2015 8:01 AM
Joined: 7/24/2015
Posts: 3020


Michael Ellenbogen wrote:
I have become afraid of most confrontation. I just cannot deal with it as it makes me so aggravated. I know I may not be describing it right but that is also part of the problem. If I have to spend time to think of how to say it or reword it I have lost the thought of what I wanted to say. That is why I just write what is in my mind. I find it very hard to write things a different way just to satisfy what others are looking for.  Hard to believe when I had to write convincing proposals to top management in order to make a case. So this is what caregivers need to learn that they must take this step.    

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I experience it similarly.  And I too used to be such a good writer and speaker.  It is hard when you are aware of what you have lost, try to tell people, but they still expect you to write and speak like before.  It feels very disrespectful to me, as in, didn't you just hear what I said?

I have said to my workers many times, that if everyone in the world just did what they were supposed to, I could continue to function quite well...it is when they do something outside of the script that everything becomes very evident how poor my functioning really is.  Like when I call to schedule appointments...if they would just schedule the appointment, all would be well...but they often do something else...and I am lost.  I feel like I am trying to get them back on track, but I have lost all skill to navigate it.  Eventually what comes out is, "just schedule the dang appointment!"  And I am fully aware of the unworkability of that, and completely powerless to affect any change of it. 

For me, for things to be dementia friendly, others really need to understand the communications deficeits we have...as I think they are pretty universal.  But, for that to happen, we need to be able to tell them about our communication deficeits in a way that they can understand them.  As we progress, we are completely dependent on others to be able to guide the conversation appropriately, so we are supported in it.  As I often say, done right and we almost purr. 

For me, the deficits look like...if you ask me how a dress looks, and it doesn't look good....I will say straight up, that is an ugly dress.  What I have lost, completely (as in it is not coming back no matter how much I may need and want it to), is the "flowery" ways we learned through life of how to say that in a sweet way.  I can't even imagine what thay would look like. 

What I have also lost, is when people (like when you are trying to schedule an appointment) are being slow, or not really understanding you...people (and they may not be aware they are doing this, until it is gone), self-talk and say things that help one to sort of "write off" what is happening and make it ok in their minds...which allows for patience.  Because that is gone, I feel like I am shoving a box down on them...repeating what I said, more frustratedly as I go.  Again, I am aware of the unworkability of that, but also equally powerless to change it...because I have been aware of this for 6 months or so and have been trying like everything to effect some change, or find some other way.  The only solution I can think of is to just stop going to my medical providers...but everyone tells me that I cannot do that...so I am stuck in this no win situation. 

Also gone, is the ability to live, interact, and act like the sky is any color other than what it is.  People may not realize that they do this in conversations...but it happens all the time.  I cannot hold both images at the same time, and merge the two...the sky is blue, and if the other person keeps forcing the issue, you might even get the sky is f'ing blue from me. 

What people don't realize, although I tell the people in my life...also gone are filters.  In my head, when this stuff is happening, I want to scream obsecenities at them...but am able to still keep my mouth shut...but it takes all my effort and energy to do that, like I am paddling as fast as I can, almost faster than humanly possible. 

Nor, can I read between the lines.  People do that a lot in conversation.  They say something vague that means something else. 

I am not sure what any of it looks like to someone else...but trying to think we can still communicate and perform like before, in conversations...is extremely defeating and hurtful, and I think disrespectful (if they know of my diagnosis, and if I have explained my deficits). 

They are the able ones...and I know I am working harder than I have ever worked in my life to do what I am able to still do, I think it is on them to bend...to know, to understand, and to come up with a way.  But I think we need to be in that conversation, so things can be fielded on us, and see if we all can't come up with a what works. 

I love that Mimi and Iris still have the spirit that we can do this, and I love that DAI is doing this...and I am sad that it is left to us with the disease to do it, but glad and grateful that we can.  Let's keep talking.


 
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