RSS Feed Print
I am feeling discouraged by reading so many negative caregiver posts
Iris L.
Posted: Tuesday, May 5, 2015 11:03 PM
Joined: 12/15/2011
Posts: 18342


This is May, and I had planned to post about my success of 6 years on Exelon patch with a diagnosis of cognitive impairment nos. But lately I have been feeling discouraged.

I feel like I am trying to empty the ocean with a spoon. I try to remain positive and focused. This board is the only place in the entire world that I receive encouragement for my cognitive problems.

Lately, I have not been encouraged. I usually ignore discouraging posts, but they seem to be all around me. I am prone to depression, so I must be careful to avoid negativity.

Iris L.

llee08032
Posted: Wednesday, May 6, 2015 7:05 AM
Joined: 5/20/2014
Posts: 4408


Lately, I have not been encouraged. I usually ignore discouraging posts, but they seem to be all around me. I am prone to depression, so I must be careful to avoid negativity.

((((Iris))))

I feel the same way...it is too much sometimes. This seems to be occurring on a weekly basis. This week, the topic of "terrified" upset me. The weeks before it was "lost" and something before that. You don't even have to read the post the topics themselves are enough and seemingly thrown in our faces when we sign in on our board. The tone of the posts is antithetic and counterproductive to what is supposed to be a supportive environment for us patients.

We try to hang on hold each other up, pull each other up at times while swimming in a sea of hopelessness...

How can persons living with dementia have a meaningful and enriching life when they are surrounded by hopelessness? When everyone around them has given up hope?

Mimi S.
Posted: Wednesday, May 6, 2015 7:55 AM
Joined: 11/29/2011
Posts: 7027


Hi Iris and Lee,

I feel differently than both of you seem to. Is this because I've personally see both sides.

Yes, I want to stay positive and many of the postings of caregivers are sad, angry, discouraging, whatever. I'm fine with it because I've witnessed that side of Alzheimers. Patients do suffer and they can profit from caregiving using tips they find on these Boards.

As we have acknowledged previously, the Caregivers who post on these Boards are often those worn to a frazzle with the burden of 24/7 caregiving. It can be very, very frustrating. Caregivers have been known to die before the ones being taken care of. Posters try to encourage those is such situations to get relief. The patients whom the caregivers are usually in the late middle stages to end stage. I don't know the seven stages and so use the medical terminology.

On the other hand, care partners seldom post

Mimi S.
Posted: Wednesday, May 6, 2015 8:41 AM
Joined: 11/29/2011
Posts: 7027


Well, obviously I reached the limit of what I was allowed to post but did not receive such a message.

Now what else did I write? Well I have no idea of what I posted.

Oh, I did comment that Care Partners, who by then, are not really in a partnership but are in a care giving situation, seldom post if there are no problems. We know that most dementia patients do not have problems, but when there are, the Care Givers need help. Sometimes just having a place to vent is important.

Those of us with dementia, who are discouraged/ angry with such posts, need to stay off the two Caregivers Boards.

Such posts do not bother me. I know the reality is that there may come a time when I will behave like some of those described on these Boards. By then I don't suppose I'll be reading these Boards. I live in a fantasy world where because I'm so diligent about Best Practices, it's not going to happen to me. I know it's not reality but it's such a nice idea that I don't try to face reality as far as that future goes.

Lisa Ramey
Posted: Wednesday, May 6, 2015 9:01 AM
Joined: 6/20/2014
Posts: 160


Mimi,
Well said. Your post helped me in many ways.
1) I remember that I am a realist and that's why I don't do the best practices thing. I do what ever I want. I was afraid to say that here.
2) The care giver post sorta bug me but now I see the desperation and sympathize
3) I wonder if I will behave like some with Alz do,that worries me. But I told hubby Dr is ready with Risperdal when needed so get it!!!!
So thanks for the reminder of my realist self it's been a while I like that part of me.

Lisa Ramey

Jo C.
Posted: Wednesday, May 6, 2015 10:32 AM
Joined: 12/9/2011
Posts: 13462


Hello Dear Lisa: Mimi's posts are spot on and very accurate. She is very wise and also very experienced on many levels and is such a gift to us. She is also very highly respected in many circles and works diligently on behalf of those with AD all the way up to and including Washington D.C. She is a whopping example of "best practices" and how positive that approach is. (I need to take lessons from her on that front!)

Also . . . it is true that the vast majority who come here as Caregivers are most often those who are having significant problem issues or very lonely or burned out after years of providing hands on care in difficult situations, and often, they are those who have little to very few resources including income.

Mimi is also correct in that, if the Caregiver Forums are tremendously upsetting, it is best to not read those Forums. One can be one's own advocate and look out for oneself best interests. Also, it is sometimes unfortunate to misunderstand the dynamics and internal workings of the Caregivers and they can even be blamed for things not truly existing due to a skewed perspective and fear. Most of all; do what is best for yourself, you are very important - treat yourself well and avoid those things that are a negative for you.

HOWEVER: that being said, there are SO many persons with dementia who never, ever develop the problems/issues you see online here. Those Caregivers do not often come online as their needs are few and all is more or less as well as it can be. I can give some examples from my experience with my LOs who had dementia.

My step-father was diagnosed with Alzheimer's Disease. His was a slow course and he was content and quite reasonably happy. His life, from the time of early diagnosis to the point of his death was about 20 years - yep; 20 years AND he died at 96 of a totally unrelated cause!

I did have his diagnosis confirmed and his dementia diagnosis and ongoing care was provided by an excellent Neurologist. Having a specialist made all the difference in the world. Our primary MDs are marvelous on many fronts, but they are not dementia experts and are not on the cutting edge.

I can tell you that right up until the end of life, he was continent of both bladder and bowel. He could shower with prompting, and he could fully dress and feed himself and was fully ambulatory. He enjoyed watching favorite programs on TV, "reading" the newspaper, napping in his recliner, and working simple crossword puzzles until the last year, and loved to see company. He was happy and his greatest love was Marie Callendar's Custard Pie; so we ensured he almost always had his custard pie.

Of course there were a few blips from time to time, but nothing that could not be managed.

I can fully and thoroughly understand your concern, I would feel the same way about myself, but it is good to know that there are many who do fairly well throughout their journey and that is a blessing. Your caring about others is very strong and your communication to your husband regarding medication, "just in case," is one of those loving things you do and also very practical.

You are a kind and dear spirit and your light shines brightly. I have seen some of your postings on Spousal, and you have been a positive force there too. No blaming, no preaching, just support and good information - that is very helpful to many; not only those who post online, but to the many thousands who "lurk" and read but do not come online. See? You are read by many thousands as all of us are.

My MIL who had AD also had a lengthy course. Her immediate short term memory was a bit sparse, but she lived until 93, and like step-dad, she lived at home until her death from another cause other than dementia. Just like my step-dad, she knew who she was, where she was and who we were right up until her death. She was continent of bowel, and wore a protective garment for "leakages," she had birthed six children, so bladder issues would have been there dementia or not. She too was content, able to bathe and was ambulatory but used a walker the last two years secondary to her arthritis. She loved company and watching TV and reading "romance" novels. She DID love those romances! She actually went on many short trips with her son and DIL and did well until her final year when her health was poor. She could eat without difficulty and use the bathroom independently, and liked to sit outside on the patio, but like step-dad, she needed a bit of oversight in the house for safety's sake.

My mother had a more difficult course, but she had an extremely severe and relentless form of FTD that brought significant challenges. We worked diligently with her and tried all lesser measures consistently to help her; but when her quality of life became compromised and nothing else assisted her, we permitted the use of Risperdal and were blessed in that she had no side effects AND it worked like nothing short of a miracle and her quality of life was restored. We simply addressed each challenge as it came along. I will be always grateful for that restored quality of life.

We and our LOs are all different from one another; but I did want to share with you how things went for my family members who had dementia, especially in that we had two LOs who had reasonably content and happy lives right up until their deaths at an advanced age from unrelated health issues. AND: I did not come onto this Message Board or even look for one when caring for my step-dad or MIL; there was no driving need. It was when my dear mother had over the top issues that I researched and found this very helpful and supportive place that I came onto the Message Board. There was such a huge need and I was helped so much by so many. So, I am an example of those Caregivers who come out of intense need. And I've stayed even though my LOs are no longer with me. I wanted to be able to give back some of what I had received as I have been so grateful for what I have been gifted with from the kindness of others.

I send you my very best wishes and smiles along with a big soft hug,

J.


Mimi S.
Posted: Wednesday, May 6, 2015 10:32 AM
Joined: 11/29/2011
Posts: 7027


Lisa,

Sorry you felt you couldn't follow Best Practices. Those of us who do, can be pretty positive that you should.

That being said, if you have other beliefs, do feel free to say them out loud here.

What we don't allow here is a put down of someone else because they are doing what they feel best and we don't agree.

We are so glad you're here.

Iris L.
Posted: Wednesday, May 6, 2015 12:41 PM
Joined: 12/15/2011
Posts: 18342


Ilee, you are the only one who gets what I am talking about.

No one can live in a persistently negative environment.

I can see why patients who live in negative household environments have meltdowns and go ballistic.

I am trying not to have a meltdown myself. Been there, done that, don't want to go back.

My memory is getting better but I am feeling down. This board is my only place of support. I feel poked and prodded by slings of negativity.

You're right, Ilee, we have to hold each other up.

{{{{{{{{ Ilee }}}}}}}}

Iris L.











llee08032
Posted: Wednesday, May 6, 2015 9:13 PM
Joined: 5/20/2014
Posts: 4408


FYI

I never read posts from the caregiver boards...

llee08032
Posted: Wednesday, May 6, 2015 9:40 PM
Joined: 5/20/2014
Posts: 4408


Iris,

Apparently we are the minority... it's seemingly deja vu with more or less the same things being said in defense of the CG's posting on our board.

Iris
-
-
-
-
Holding you up!

kwc
Posted: Thursday, May 7, 2015 5:00 PM
Joined: 5/22/2014
Posts: 37


If I am understanding this correctly I read all these posts and it is always about the caregiver. I was diagnosed last year I am. 54 years old I wish that I could read more about people like us who are going through this who are still dialed in 54 years old I wish that I could read more about people like us who are going through this (ALZ) who are still dialed in (For lack of a better word ) I know for myself there are so many questions but nobody to ask because everywhere I go it's always about the caregiver I have excepted my situation and I feel I am making the best of it all things considered. myself I am. Aricept and I was also fortunate enough to be one of the people on phase 3 of the trial drug LMTM
GwenD
Posted: Thursday, May 7, 2015 5:18 PM
Joined: 11/27/2014
Posts: 88


Hi KWC, I was diagnosed last December. I too have been looking on this sight for more input from those/us dx'd with eoad.

You mentioned a trial, did you complete it? Did it help? My dr is talking to me about a phase III trial from biogen starting this summer.

I began aricept two weeks ago and my husband has noticed I am having mood swings, I have been irritable and agitated, he said he is walking on eggshells. That's no way to live for him, but I don't want want to lose my cognition faster than necessary. I think it was actually helping, bummed and a little discouraged. So I am going to the dr tomorrow and will probably discontinue and hopefully be put on something else.

Please start a new thread so we can talk.

GwenD
Posted: Thursday, May 7, 2015 5:21 PM
Joined: 11/27/2014
Posts: 88


Thanks Jo C and Mimi S!!!
Mimi S.
Posted: Thursday, May 7, 2015 7:38 PM
Joined: 11/29/2011
Posts: 7027


Dear Gwen and KWC and any other recently diagnosed Younger Onset.

This is the place for you both to come. There have recently been several Younger Onset, both caregivers and those diagnosed on these boards.

For now, even though this board is intended for those so diagnosed, lets also accommodate their care-partners. If one is in Early Stage, most of us prefer the term care-partner to care giver. It better describes the relationship. Most of us have a good relationship with our care-partner and discuss together all aspects of what is happening.

Those who are the partners of one diagnosed so early don't feel they share the problems noted in the spousal and caregiving board.

Can we be one family for a while and see what develops?

And for those who don't like reading ABOUT THE VENTS AND PROBLEMS OF CAREGIVERS OF FOLKS MUCH FURTHER ALONG THAN WE WHO POST HERE, don't go there.

Iris L.
Posted: Thursday, May 7, 2015 8:47 PM
Joined: 12/15/2011
Posts: 18342


Mimi S. wrote:

And for those who don't like reading ABOUT THE VENTS AND PROBLEMS OF CAREGIVERS OF FOLKS MUCH FURTHER ALONG THAN WE WHO POST HERE, don't go there.

Caregivers who post on the YOAD board are complaining about patients who are exactly like the members here.

Personally, I have stopped reading disturbing posts that are destructive to my mental health.

I don't know if new members are able to avoid reading disturbing posts.

I fear for the new members. I would think they would be interested in reading positive experiences and encouragement from patients like themselves.

Iris L.

Jo C.
Posted: Friday, May 8, 2015 12:55 AM
Joined: 12/9/2011
Posts: 13462


Dear Iris: I have noticed that you do not sound like your usual self lately. Have you been ill, or are you presently feeling ill or out of sorts? If so, have you seen your physician(s)?

I so hope you are not ill, but if you are not feeling up to snuff, it is best to see the doctor(s) and get things looked at early before they get a "grip." Sometimes we forget to take good care of ourselves.

Take care and treat yourself well; you deserve it.

J.




kwc
Posted: Friday, May 8, 2015 6:40 PM
Joined: 5/22/2014
Posts: 37


The company that make the pill I am taking isTauRx therapeutics I just started this study I think it was in September it goes for like 20 months I believe in Memphis My wife goes with me because they ask her questions also. They take a lot of MRIs and I get a few CT scans also My wife has me taking all sorts of vitamins also along with Arecept I think it all helps but not sure myself people ask me how I am doing I think I'm okay but I am with myself all the time I heard I do get agitated easier now I find when I'm talking and I have to put a lot of thought into it while talking I will get messed up sometimes I do not know how to start a new thread I would like to though
Mimi S.
Posted: Friday, May 8, 2015 6:45 PM
Joined: 11/29/2011
Posts: 7027


Hi KWC
To begin a new post, scroll to the top and click on begin a new post.

If you get mixed up, call the help line: 1-800-272-3900 while you're at the computer and ask them to walk you through it.

Good luck on the test you're on. It's a great way to get superior care.

Please ask whatever questions are on your mind.

TayB4
Posted: Saturday, May 9, 2015 7:32 AM
Joined: 8/8/2014
Posts: 886


I think that some of the issue with caregivers posting on this forum is because of its title-Younger Onset Alzheimer's or Other Dementias-and the title of one of the other boards is-I have Alzheimer's. I know that when I was new to these boards I was confused and thought that this forum was for the caregivers until I started to read the messages. I wish that there was a specific forum for caregivers of those with EOAD. Our concerns and issues are different than those who are diagnosed later in life. I have submitted that request to the administrators. Maybe if they get enough requests they will consider it.
Mimi S.
Posted: Saturday, May 9, 2015 8:52 AM
Joined: 11/29/2011
Posts: 7027


Hi again Tay,

Your thinking is something that several posters are also thinking about.

That is why I, personally, not as a PV and I'm certainly not an Administrator, have asked that this particular topic be kept open to both caregivers, whom I call Care-Partners at this time and those afflicted with the disease.

And you are correct, you do have the same problems as those diagnosed at the typical age, 70's. In addition you have the problems of when and how to stop working and the problems of supporting children when your income is cut, sometimes drastically.

And of course this is complicated by dealing with very young children, as a parent.

How do you tell your children? Currently the best book to help is Maria Shriver's What's Happening to Grandpa. Just from the title we know there's some major adapting to do.

I doubt a major publishing company would add such a book to their inventory because they need to sell such a large amount to make a profit. Number wise, there are not that many people diagnosed with AD who still have young children.

But, we need someone to write and illustrate, or get some else to illustrate a book and then self publish. One can print maybe as few as 25 books and then order more when those are almost gone. Reaction?

TayB4
Posted: Saturday, May 9, 2015 2:32 PM
Joined: 8/8/2014
Posts: 886


Mimi,

I actually am an amateur unpublished writer. I have written a rough draft of a book of this type already. I hadn't considered self publishing, but maybe I should.

Mimi S.
Posted: Saturday, May 9, 2015 7:47 PM
Joined: 11/29/2011
Posts: 7027


Tay, that is a fantastic idea. I have written several books for my local Historical Society. I've been lucky that I have found a graphic artist to take my manuscript and make it fit to print (as a donation to the society,). Then we just go to a local printing company .That way, you can have a limited number printed. Of course, the fewer that are printed at one time, usually, the greater the price per unit is.

And another thing: You couldn't sell them on alzconnected. But the Aliz. Assoc. does sell some publications.Maybe there could be some arrangement made.

The need is there but the number who need it in the country as a whole is not huge. You need marketing people to tell you how to do it.

Iris L.
Posted: Sunday, May 10, 2015 2:03 AM
Joined: 12/15/2011
Posts: 18342


I would like a clarification from the Moderator.

I continue to be in a state of depression, now with anxiety over reading discouraging posts by caregivers on this board. Caregivers have dedicated boards for spouse and partners and for general caregivers. The introduction for this board says it is for patients to communicate with each other. Is it possible for caregivers to be asked to post their venting posts on the Spouse/Partner board or the general Caregivers board?

It's too late to tell me not to read those posts. The disturbing thoughts are already in my mind and won't go away. I feel like I'm in a whirlwind.

Younger-Onset AD or Other Dementia
If you are under age 65 and have Alzheimer's disease or another dementia, use this forum to connect with others in the same situation.

Iris L.

Mimi S.
Posted: Sunday, May 10, 2015 8:30 AM
Joined: 11/29/2011
Posts: 7027


Iris,
I did go back and reread the explanation. I copied it .

Sorry, I can't delete it and the pertinent information is in white.

So, I think many, like myself did not read past the Younger Onset AD.
Younger-Onset AD or Other Dementia
If you are under age 65 and have Alzheimer's disease or another dementia, use this forum to connect with others in the same situation.

Mimi S.
Posted: Sunday, May 10, 2015 10:55 AM
Joined: 11/29/2011
Posts: 7027


Interesting,
When I copied and pasted, the pertinent quote was in white. It showed up in black, so that part of my remarks obviously made no sense.

GwenD
Posted: Sunday, May 10, 2015 1:59 PM
Joined: 11/27/2014
Posts: 88


I think this thread is depressing all the negativity. I will avoid this thread.
Iris L.
Posted: Wednesday, May 13, 2015 6:44 PM
Joined: 12/15/2011
Posts: 18342


I am feeling more discouraged, if that is even possible. I have not heard from the Moderator, despite daily requests and an email. I feel like I have been lying all these years, when I posted that this is a safe place to discuss what concerns patients with cognitive impairment and early dementia, and that we support each other. I don't think I have ever felt so bad in my life.

Iris L.

Iris L.
Posted: Wednesday, May 13, 2015 9:08 PM
Joined: 12/15/2011
Posts: 18342


I did get a response to my email to alzconnected. I don't feel any better, but so be it.

Iris L.

Nerigez
Posted: Thursday, May 14, 2015 7:41 AM
Joined: 5/10/2015
Posts: 2


Dear Jo ty ty ty for that post.

My grandmother had this disease for a little over 20 years and passed becuase of it at 93. She experienced many of the worst symptoms and I know she suffered greatly. My mother has had it for the past 11 years and I see the anger frustration and confusion she goes through everyday. I myself.. well time will tell.

You post about your family gives me hope that maybe things wont be as bad that, perhaps, I if not my grandmother or mother will be the lucky one in this scary position. Perhaps I will still be able to read for years to come even if it is at times difficult already and that I might be able to enjoy things as they have been and pass of somthing else instead. Maybe I will be able to enjoy my sons graduation in 4 years and I will be able to maintain close friendships for years to come.

I have only seen the worst parts of this devastation so far but knowing he did so wonderfully truly gives me hope for myself ty so much.


kwc
Posted: Thursday, May 14, 2015 7:49 AM
Joined: 5/22/2014
Posts: 37


I am sorry you feel that way. It is not easy I feel I make it easier through humor but that only goes so far. the good Lord sure helps too. But it is bad feeling to know that someday I will be struggling and the world will be passing me by and I am still in it. Sometimes I have so many questions but then when asked I forget them or it is by someone that I know can't help me so what is the use lol I love the response when I say something happens Oh I know I do that all the time
Mimi S.
Posted: Thursday, May 14, 2015 8:32 AM
Joined: 11/29/2011
Posts: 7027


Again, please, those of you with Younger Onset AD, please keep coming here. You can use each other's support. it's so important.

And to Nerigez. You are so afraid of getting the disease. And that has also happened to many of us who eventually did get the disease. You can use this fear to your advantage. Get yourself to a good dementia specialist shortly after you become aware of signs. Keep a log of what actions of yours bother you. Also be proactive by modifying your lifestyle if necessary to follow our Best Practices.

And Iris. You began this thread at the beginning of this month. You say things are still bad. In my opinion, it's time to get to whichever of your doctors you feel is most sympathetic to you. The visit should include various blood tests. I'm not a doctor, so I wouldn't guess which ones. I do hate to see you so down in the dumps.

Jo C.
Posted: Thursday, May 14, 2015 9:36 AM
Joined: 12/9/2011
Posts: 13462


Hello again, dear Iris: For awhile now, there has been a "different sound" to your voice that is quite unlike you. I am truly concerned on your behalf and wanted to reach out to you again; I sincerely do care.

In past posts, you have openly shared problem issues you have experienced with your medical history including having suffered significant depression.

Recently, it "sounds" as though there may possibly be some condition changes that have been worsening over time that may be affecting the very quality of life and perspective, and I so hope I can encourage seeking the assistance of your physicians; perhaps with an urgent appointment.

Sometimes, when we are in the midst of such overwhelming dynamics, we fail to recognize it in ourselves and we continue to move in unnecessary misery.

There is help if one puts out their hand. If you feel that you cannot bear what is happening to you and feel at last tether, please get to the nearest ER for assistance if you cannot immediately access a physician appointment, or call for emergent help if needed.

This is not a post done lightly; it is one that I hope can help in some way.

With concern for our Forum friend and sending warm thoughts your way,

J.


llee08032
Posted: Friday, May 15, 2015 7:31 AM
Joined: 5/20/2014
Posts: 4408


Would it be appropriate for cancer patients on an online support forum to have to have to read graphic depictions from others who don't have cancer about how the patients organs are being eaten alive, how bad the pain is going to get, how awful, hopeless and tragic the prognosis, the dying , the suffering, suffering, suffering, devastation etc.? Would that not upset, scare and discourage the cancer patients?

Why is this point not taken here? Why are we being treated differently than a patient with cancer or heart disease? What bothers us bothers us. Why can't we just have the freedom to express ourselves without having our concerns minimized and sugar coated? Without being told about more devastation? Without being made to feel like something is wrong with us because we feel this way and others do not? It is not fair that the majority (CG) rules because our majority (the patient) cannot come on the board!

The dynamics of what is at play here is similar to interracial discrimination.

I know I just wasted my breath and time. Why even bother when my comments will be met with more stories of devastation and loss. I have to ask is this my imagination or does this seem like some of the tragic posts are intentional and made to upset us? Too, too much information!




alz+
Posted: Friday, May 15, 2015 9:10 AM
Joined: 9/12/2013
Posts: 3608


L Lee -

I am asking the audience tonight this very question.

What is it about this illness that gives you permission to openly disparage people who have dementia?

I also posted along winded reply there and entered it on the EOAD topic today.

For all those suffering I am challenging in public with the energized support of the Wisconsin dementia network the notion that we become Empty Vessels.

I am siting the symptoms of soldiers with PTSD returning and having challenging behaviors, and also to compare those who are acting out so horribly in their view with people held in solitary confinement.

There is no treatment? Yes there is. Love and Courage, a proper setting to live, people to fill in where our losses begin, and what ever provides the patient with a sense of security as they live out the hard work accommodating new losses, depression, loneliness, fear, anxiety and accidents.

This illness carries a DREAD based on bull sh*t. Just like when Down's Syndrome children were hidden away until people said, "Hey my child gives me more joy and I love this child and want a normal life for him/her."

Mental illness was a moral failing, people were thrown in cages not that long ago. My own Mother suffered abuse and shame after a nervous breakdown while in a good hospital.

We must reject at every opportunity the idea we are just worthless empty vessels who DO NOT REMEMBER YOU. This illness is a process of dying and we should be treated with respect and kindness till our last breaths as anyone deserves.

Consciousness is not reciting the name and family position of relatives or spouses.

I am full of fire to talk about this in public esp after I read how sad Iris is, a sensitive intelligent kind educated woman who has helped thousands on these boards, her despair has me up and walking and ready to challenge the set up we endure.

We may not get perfect care, and I am leaving that desire behind because I do now understand the fatigue of caring for a person who becomes helpless. Our dog had knee surgery and needed 24 hour care for 10 days and I was exhausted but my husband and I worked in shifts. Can people learn that if they undertake a single person care giver role that is THEIR problem, not out our responsibility to arrange time off or fill in care.

I am not denying some people are a real handful or that they get tired, or that they miss the lives they had before - HELLO! WE DO TOO!

tHIS IS A LONG PROCESS OF DYING and is hard work. We accommodate our daily losses, we do out best under the circumstances. We respond to people and animals who help us through the rough patches and we will inspire others to create new ways of living out our days, married, unmarried, what ever.

Do not get too involved with their delusions about the nature of Alzheimer's. It is up to us to challenge the notion of empty vessel a waste of life, time and money. When people know better they behave better. These tirades against a loved one may help them through a day but does nothing for the movement for patients rights.

I love you all so deeply and believe we are going to change this whole show by challenging the prevailing "no hope, no treatment" standard.

Will try to find alternative online forum for patients and enlist the help of the people in my closest dementia network of professionals.

Meanwhile, continue to bless each other when we get overwrought, lift each other up, be open to new ways of dealing and living. We deserve the best care possible.

One quote stuck with me, :I have known people with dementia living in a hut with a village well happier than those sitting in assisted living halls with chandeliers."

The treatment is loving support, freedom to move about and explore in safety, enough food, good shelter, a place to rest, and people who accept us as living humans made in image of the Divine.

When you get weak, comfort yourself. When you recover, reject the lies in your mind first, the rest will unravel. truth always beats lies.


Paul Hornback
Posted: Saturday, May 16, 2015 6:33 AM
Joined: 8/9/2013
Posts: 584


Alz+, you are certainly full of fire and loaded for action. Good luck and give it to them with both barrels!

God Bless, Paul