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your next mission, should you choose to accept it....
alz+
Posted: Wednesday, December 24, 2014 8:55 AM
Joined: 9/12/2013
Posts: 3608


Invent a new paradigm for living with Alzheimer's is not Mission Impossible.

 

Obviously one isolated overwrought caretaker to one isolated frustrated patient is not workable for most humans.

 

Losing the ability to work at what we were good at causes too much grief to accept that as just the way it goes.

 

If 1% of us created a means to expand the life of an ALZ patient we would revolutionize the current care and treatment.

 

People acting as caregivers do not have the perspective to change our situation, they are focused mightily on changing THEIR situation. Being home in front of a TV feels like solitary confinement, a prison ward with all the psychological damage of being put there on false charges.

 

We need people to educate, create community style places to continue to use our knowledge and skills. Open gardens, founding cafe days to create places to hang out. Designing rooms easy to live in. Wardrobe. Gift Kits of aroma therapy products. Movie day. Book clubs where maybe we are read to.

 

Patients talk to doctors programs. Art projects. Collectives. Converting motels to assisted living. Dog walking. Travel groups.

 

 Our own organization to further our interests.

 

We could invent the world we want to live in. Yes, I need help to accomplish most of my day now but I can still think.

 

 Memory loss is no excuse to not use our imaginations. What anyone accomplishes can be replicated.

 

If you are just diagnosed, or have been for some time, and are mourning the loss of work, there is a lot to be done. Opportunity is wide open.


Paul Hornback
Posted: Wednesday, December 24, 2014 12:03 PM
Joined: 8/9/2013
Posts: 584


Alz+, so very well said! We all need to find some mission or service project we can do to help future generations live better and more rich lives when diagnosed with Alz disease or dementia.

 

Thanks for your thoughtful encouragement.

 

God Bless, Paul


alz+
Posted: Wednesday, December 24, 2014 1:12 PM
Joined: 9/12/2013
Posts: 3608


Thanks Paul for being here - you calm me down! ha!

 

Hope people imagine themselves doing something new, having fun, getting paid! Sweeping floors is a spiritual practice for enlightened beings. I have gotten into cleaning a drawer, spent a couple hours on it, it was so Be Here Now. Parts of this illness or condition are very interesting.

 

No point getting too down for too long because soon as you get comfortable with the depression some one will find a cure.
 

Corporate customer service training, CNA specialized training, patient and caregiver counselors, more ideas?

 

I remember a police officer (?) who used to post here - or maybe his  wife? He had so much experience and training I remember thinking "This guy isn't going to be out of work, he will just have a different position as an adviser."

 

Any one who volunteers and is truthful about having Alzheimer's or other dementia is an AMBASSADOR.

 

Making music collections for people. Car detailing. Mentoring. Record family history. Feed ducks in park. Help keep a playground clean.

 

Hey, it is taking a very long time to form these half thoughts and longer to retype so time to zone out.

 

 Alzheimer Improve Group...

 



llee08032
Posted: Thursday, December 25, 2014 1:54 PM
Joined: 5/20/2014
Posts: 4408


Feeling inspiration and amazement at the creative thinking and always that out of the box originality that you gift to us here alz+ It is spilling out let it go and get it all on paper...help to get others out of that darned box!
jfkoc
Posted: Friday, December 26, 2014 1:40 PM
Joined: 12/4/2011
Posts: 21250


"People acting as caregivers do not have the perspective to change our situation, they are focused mightily on changing THEIR situation. Being home in front of a TV feels like solitary confinement, a prison ward with all the psychological damage of being put there on false charges." 


 
I am sorry and concerned that this is your opinion. I believe that providing the best possible life for their LO is a serious and on-going concern of the caregivers who post on these forums.  

 
Perhaps what you are picking up on is the frustration we share here that we are missing the goal we set for ourselves. It is all but impossible to interact with anyone all of the time and still take care of the other things which must be done and that does include looking out for ourselves.  

 
Some of our loved ones are best with little to do. They only do well with certain activities. Others live with loved ones who thrive on much more activity. It is so personal. 

 
As always, I thank you for your input...it is invaluable to me. 

Iris L.
Posted: Friday, December 26, 2014 4:35 PM
Joined: 12/15/2011
Posts: 18520


alz+ wrote:

Invent a new paradigm for living with Alzheimer's is not Mission Impossible.
 

  

If 1% of us created a means to expand the life of an ALZ patient we would revolutionize the current care and treatment. 

  

  

We need people to educate, create community style places to continue to use our knowledge and skills. Open gardens, founding cafe days to create places to hang out. Designing rooms easy to live in. Wardrobe. Gift Kits of aroma therapy products. Movie day. Book clubs where maybe we are read to. 

  

Patients talk to doctors programs. Art projects. Collectives. Converting motels to assisted living. Dog walking. Travel groups. 

  

 Our own organization to further our interests.
 

  

We could invent the world we want to live in. Yes, I need help to accomplish most of my day now but I can still think.  

 

 

Alz+, there is nothing wrong with your creativity and your ability to have good, no GREAT ideas!  Keep them coming!  You  just have trouble implementing your ideas, as do the rest of us.  But isn't that true of all ideas?  All ideas need implementing--we have more trouble in this area than most.

Our challenge will be to get others to join with us in accomplishing our goals.  I wonder how John Zeisel did it?  

So what if we need a bit of help nowadays?  There are people in the world causing havoc and killing and devastation!  At least, we are not causing havoc and killing and devastation.  We are in the service of creating calmness, serenity, order, and more caring in the world. 

This is an opportunity. Whatever is done to help us patients with memory problems will help more than us.  Oo-whee, Alz+!  The thoughts you have!

Iris L.



Iris L.
Posted: Friday, December 26, 2014 5:18 PM
Joined: 12/15/2011
Posts: 18520


jfkoc wrote:

 

 
I am sorry and concerned that this is your opinion.  

 
Perhaps what you are picking up on is the frustration we share here that we are missing the goal we set for ourselves.  
 
  
 

  

I believe we will have to accept that patients and care partners look at our collective situations from different sides.  One might even view them as opposite sides.  What is a positive from one side might seem to be a negative from the other side.   
 

 
The difficulty is that here, each side can see the other side's posts and thoughts. 

 
The challenge will be to be able to see the other person's side, and not take it personally, because it may be upsetting.

 
Family caregivers frequently post their disappointments and unhappiness with dealing with their LOs with dementia.  It is hard to take. I have come to realize that they are venting and expressing themselves. 

 
We patients have the right to vent and express ourselves, too. 

 
Dealing with dementia is hard.  There seems to be an "us" versus "them" mentality that doesn't exist or is not so prevalent with other diseases.  Perhaps, one day in the future, we will have available all the accommodations that Alz+ mentioned above, such as households that embrace the memory impaired, engaging activities, book clubs where we are read to, dogs and other animals to love on and to assist, sweet music, aromatherapy gift baskets, assisted living converted motel rooms, and so forth.   We could all be living in a Hogeway-like dementia village, patients and family members alike.  We'd all be supported physically, medically, financially and emotionally. 

 
But we don't have that yet.  So we'll all have to vent how we feel today, and vent about what's going on in our lives, today.  The good, the bad, and the ugly.  There is a lot that is ugly.  How can we move forward if we sweep the ugly under the rug? 

 
I have learned a lot, from reading the caregiver boards, about what is bothersome to family members.  It's not enough to learn about the medical aspects of dementia, but we both must learn how we can live with each other with the new reality.  Life is different.  The alternative, constantly going against each other, is gruesome.  We can't take that. 

 
I have an idea for a thread that I'm going to post later.

Iris L.
 

 

 

jfkoc
Posted: Friday, December 26, 2014 10:17 PM
Joined: 12/4/2011
Posts: 21250


What we garegivers learn from this forum is very important....we want to hear and to understand. But I think that those of you here posting are not at the same place in this journey as are many of our loved ones.  

 

We must all be able to speak freely. Honest conversation can only lead us to better solutions. All of us are slammed with the difficulty of life in a tough situation. Two hours ago my husband and I were discussing Aristotle...ten minutes ago he was unable to turn over in bed and I am not strong enough to help much.  I am heartsick and have no idea what to do.

 

I await your new thread, Iris.


llee08032
Posted: Saturday, December 27, 2014 8:32 AM
Joined: 5/20/2014
Posts: 4408


Ditto Iris!



At this point I cannot read posts from the caregiver's forum. I've visited 2-3 times and read under several topics and it was unsettling for me, personally. Every now and then I look at the topics and just come back here to the young onset board. I have been concerned about an us vs them mentality here on the boards and have seen patients here on the boards posts being dissected and taken in the wrong way by caregivers at times. I worry about what I post because it may be taken the wrong way by a caregiver when I just want to communicate freely with my fellow patients. I worry that things I say here will be challenged by a caregiver when I am not always feeling up to a challenge and life in the world of living with dementia presents enough of a challenge. Being challenged wears me out and makes me lose focus when I am struggling with emotions. Some of us here may sound like were doing really well but make no mistake about it we don't fully understand how a caregiver may feel and a caregiver does not fully understand how we feel. I feel there is pressure and high expectations from us persons with dementia by the caregivers at times. I feel that frustrations are sometimes vented on us. I come for information and support, empathy and understanding from those that walk in my shoes. I see nothing wrong at all about what alz+ said and will defend her: People acting as caregivers do not have the perspective to change our situation, they are focused mightily on changing THEIR situation. Being home in front of a TV feels like solitary confinement, a prison ward with all the psychological damage of being put there on false charges.

Now I feel like iris is expected to come up with something to further explain and maybe she is feeling pressure (I don't know). We have a right to speak out and be heard about what we need and want. I am feeling weary from this already. I've made up my mind for now that I will not respond to a post from a caregiver for now. And I have wanted to find a place just for patients where I can freely express myself w/o out having hairs split with my posts. I guess at this time that is just too much to ask for. Also we here on the board should not be compared to other's loved ones and where they are at in their disease. It makes me feel as if I'm cheating the illness or something I don't know but I'm feeling emotional and hurt now. I should be writing about my damned first exp with Xmas with this disease but I chose to defend my friend's. Take what you need from our posts and leave the rest. WE are entitled to feel and express ourselves here. I think...or may be I'll be thrown off the board.


jfkoc
Posted: Saturday, December 27, 2014 9:33 AM
Joined: 12/4/2011
Posts: 21250


I am obviously the offender and for the second time I apologize  Never did I intend for anything I posted to be harmful to anyone. 

Alz+...my response to you post came from concern. I regret if what I said was seen as needing defending. Iris, I was truly looking forward to reading  your new thread. Sorry if that put pressure on you.

 

Guess I never felt a "we/they" thing"... only one team learning from each other. Since I don't get it


 I won't post anymore.


Iris L.
Posted: Saturday, December 27, 2014 5:48 PM
Joined: 12/15/2011
Posts: 18520


jfkoc wrote:

Guess I never felt a "we/they" thing"... only one team learning from each other. Since I don't get it 


 

  I won't post anymore. 


 

I don't think my post was understood.  I was not saying that caregivers should not post.   

 

I will break it down more.  What each of us has to post will be unpleasant and upsetting for the other.  What patients have to post can be upsetting to the caregivers.  What caregivers have to post can be upsetting to the patients.   

 

If we choose to read, we have to accept what is written and not take it personally, i.e. not become "offended."   

 

We all see things from our own perspective.  We have to learn to see things from the other's perspective.  It comes as a shock to us to learn that there is another perspective.  It came as a shock to me, and I am a professional, trained not to be shocked by what I hear or read. 

 

I used to comment on upsetting caregiver posts because I felt I had to defend the patients.  I cut back on doing that, for 2 reasons.  1) the caregivers are expressing from their viewpoint what is happening.  If I can add some education to the situation, I will try and post a comment.  2)  The caregivers are expressing their feelings.  I can't tell another person how to feel, or that their feelings are wrong.   

 

I think it is very important that the two boards that we have for patients remain as vehicles for patients to feel FREE to express ourselves.  There are many websites and avenues in the real world for caregivers.  There is little for us, and nothing like these 2 boards.   

 

It is more than important, it is VITAL for us.  Regarding dementia, it is happening TO us, not around us.  We need to talk about it without fear. 

 

One of the patients posted about euthanasia.  I don't care for that, but I believe it is something that crosses patients' minds, and should be discussed, if a patient wants to disucss it. 

 

The care of dementia is changing, from being primarily nursing home care for afflicted patients, to care for the early stage dementia and impairment patients who still are fully aware of everything.  We can communicate with family members who formerly made all the decisions without input from the patient.  We on this board are not in the position of most of the LOs that the caregiver members post about.  We know what's going on, and we want to talk about it! 

 

Unlike other diseases, with dementia, there is a great deal of conflict between patient and family.  Dealing with conflict is an unwritten major aspect of dementia living.  I still haven't figured out conflict.  That's why I need these boards. 

 

The main thing that has gotten me to where I am today, six years later, aside from the Exelon patch and Namenda, has been the opportunity to read posts from my fellow patient members and fellow caregiver members, and the opportunty to post myself and to receive responses and support.    

 

I have received upsetting responses, at times.  But they allowed me an opportuntiy for reflection.  My first interaction with caregivers was upsetting--it was about using the stove.  I was advised to stop using the stove.  I felt offended.  But I took the advice, because I knew it came from  good intentions.  That advice was great advice for me.
 

What I have learned is that dementia and dementia care is upsetting.   WE HAVE TO ACCEPT THAT MUCH OF WHAT WE ARE DEALING WITH WILL BE UPSETTING, AND THEN LEARN TO HELP EACH OTHER DEAL WITH THE UPSET.  AND THEN, HOW TO MOVE ON. 

 

This is our challenge.  We have to meet it. 

Regarding reading posts from other boards, perhaps we can use that as an opportunity to read and reflect.  I will post more about what I have learned from my reflections from the caregiver boards later.



Iris L.

 

 

 

 


llee08032
Posted: Monday, December 29, 2014 12:43 PM
Joined: 5/20/2014
Posts: 4408


jfcoc,


Let us call a truce. It does not have to come to you not posting on the board. We all have a right to be here. Some caregiver's come to the board wanting to learn from us but pick at any reference made about caregivers or something that they don't like hearing or disagree with. Surely what you have learned from us outweighs the differences and negatives (I hope). 


Mimi S.
Posted: Monday, December 29, 2014 5:44 PM
Joined: 11/29/2011
Posts: 7027


Can I slip in a thought?


Those of us with the disease who are writing on these boards are in the Early Stage of the Disease.  Our thought processes may have some spaces, but we do well. We may need reminders, but we can still do many things.


Those who are writing on the Caregiver Boards are taking care of folks way past us.

 

We need to recognize that most  Caregivers of folks who are easy to care for are not seeking help and sanity on these boards. They don't need help. Their loved ones are sweet, compliant folks, who have lots of memory problems, but don't cross any one. They would never refuse to bathe or call their loved one unfaithful, bitch, thief, etc.



I've been on both sides and being the caregiver of a person exhibiting behavior problems is extremely frustrating. This has to be a safe place to complain. And I welcome their vent. 

If we with the disease don't like this, then we just stay on "our" boards.


Iris L.
Posted: Tuesday, December 30, 2014 2:39 PM
Joined: 12/15/2011
Posts: 18520


Mimi S. wrote:

 This has to be a safe place to complain. And I welcome their vent. 

If we with the disease don't like this, then we just stay on "our" boards.


We are on "our" board.  The discussion above came about because a caregiver had a concern about a patient's post.   

 

 I agree, this has to be a safe place to complain and vent.  But this has to apply for patients, too. 

 

Iris L.