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Younger onset AD - title needs to add: Persons living with - to clarify
alz+
Posted: Tuesday, June 2, 2015 7:44 AM
Joined: 9/12/2013
Posts: 3549


Well my post was deleted because I had quotation marks in title. I spent an hour writing and editing and now will do it over again. If I can remember.

Title should be changed to

PERSONS LIVING WITH YOUNGER ONSET AD OR OTHER DEMENTIA.

The board ( suddenly got a giant font) reads as if only one spot "I have Dementia" and the rest is caregiver sections. Now I am not sure.

anyway I suggest the titles read

Persons living with Alzheimer's or other dementia

and

Persons living with younger onset ALz or other dementia

personally I am glad some caregivers post here as it is likely the last chance they get to get advice from people living with dementia. Most outsider advice is based on assumptions and medications.


I am going to invent a board where Outsiders can ask people living with dementia advice.

the rest of my lengthy and fabulous ideas have gone to RIP with my lost costume jewelry collection and directions to putting on underpants correctly.


Jo C.
Posted: Tuesday, June 2, 2015 8:49 AM
Joined: 12/9/2011
Posts: 10197


Hello alz+; I can see you have been thinking about this and you have had a good idea which may clarify things and keep folks in better understanding. I know that this is being looked at amongst other things to bring improvement to the Board for all Members.

From the absolute very beginning, all Members, no matter who they are, have been welcomed with open arms and open hearts here on this Forum (and all other Forums) no matter if they have dementia or are significant others of someone with dementia . . . most of those here without dementia were/are family care partners of someone with Young Onset Dementia. Some are dealing with AD, some with FTD, some with Vascular or Lewy Bodies, some have Normal Pressure Hydrocephalus, etc. No matter the dementia, the issues are similar.

We learn from one another and we look out for one another and we offer our hands, hearts and thoughts in mutual support and share our experiential wisdom and learned knowledge.

Sometimes, if a Member has specific questions or dynamics that would be served best and get far more responses on one of the other Forums, the Peer Volunteers as well as the other Members here inform those folks and suggest that they also seek advice from that other Forum which may bring better results for their particular issue or question.

Everyone gets along just fine and are very supportive of everyone else no matter their "designation." It has only been very recently that any strife has taken place.

This involved only a very few, certainly not all, and unfortunately this went on and on and became an unhealthy ongoing issue. If one noticed, as the negativity continued, attendance of the Forum fell off. It was no longer a mutually supportive place and it showed. This served no one well and certainly is not in keeping of the intent of the Message Board.

We also have to keep in mind that sometimes a person with dementia (and those without) has times where there is a downturn and some deal with significant clinical depression and severe anxiety which can have an uptick and shroud the entire world in misery for that person who is suffering such changes, and this can often persist until professional help is received.

This of course, is very difficult for the person experiencing it, and we all want to help, and while support is here, it sometimes takes seeking medical assistance to be able to get needed relief from such suffering. Some have insight into their changed state, others may not.

Over the last week or so, I have noticed a change in dynamics. More positive support is being offered, more healthy discussion is being seen AND what a blessing - new Member(s) have joined the Forum and others are returning.

This is far healthier for all, and the sharing and support and assistance with problems, issues and the providing of knowledge and experiential wisdom once again has become the primary objective and dynamic of and for all of the Members.

I have been on the Message Board for many years, I was here with the "old" Board, Members helped me through the worst of times on my journey, and I have grown to love the Board for what it gives to so many and I also feel very bonded with and fond of the Members. I became a Peer Volunteer at the beginning of that program so I could give back.

This is an awesome place with the intent to bring us all together in mutual consideration and support of one another.

In the spirit of the Message Board - to quote Alexander Dumas in the. "Three Musketeers": "All for one and one for all . . . "

J.


Jo C.
Posted: Tuesday, June 2, 2015 8:51 AM
Joined: 12/9/2011
Posts: 10197


P.S.: I hope your underpants are doing okay! (Grin.) Ha.

J.


llee08032
Posted: Wednesday, June 3, 2015 7:44 AM
Joined: 5/20/2014
Posts: 4406


This involved only a very few, certainly not all, (I'm aware your referring to me and Iris) and unfortunately this went on and on and became an unhealthy ongoing issue. If one noticed, as the negativity continued, attendance of the Forum fell off (This feels like blaming to me. Like I am nuisance here on the board because I differ in opinion). It was no longer a mutually supportive place and it showed. This served no one well and certainly is not in keeping of the intent of the Message Board.

We also have to keep in mind that sometimes a person with dementia (and those without) has times where there is a downturn and some deal with significant clinical depression and severe anxiety which can have an uptick and shroud the entire world in misery for that person who is suffering such changes, and this can often persist until professional help is received(Do I need professional help because I have a differing viewpoint?).

This of course, is very difficult for the person experiencing it, and we all want to help, and while support is here, it sometimes takes seeking medical assistance to be able to get needed relief from such suffering. Some have insight into their changed state, others may not.


llee08032
Posted: Wednesday, June 3, 2015 7:54 AM
Joined: 5/20/2014
Posts: 4406


I've been condescended to, told I'm insensitive to the CG's plight, that I'm wrong for feeling the way I do, that I must be depressed and that I'm being negative. I do feel sad and disappointed that my feelings about getting upset over the CG posts on the patient boards were not validated and that the place where I once got support is not healthy for me anymore. It appears that the majority (the CG's) rules. I thought I was advocating for myself and others who felt the same way but now I feel like I am a nuisance who has turned the board into a negative environment.

I am truly sorry if I offended anyone! No need to worry about me having a negative influence on the board anymore...

llee08032
Posted: Wednesday, June 3, 2015 8:08 AM
Joined: 5/20/2014
Posts: 4406


Everyone gets along just fine and are very supportive of everyone else no matter their "designation." It has only been very recently that any strife has taken place.

This is not accurate there have been other (patients) who have left the board historically due to the same reasons whom I've met on another forum. There has been more than "a very few" and this has happened in the past as well.

I might be impaired cognitively but I know what is real and what is imagined.

alz+
Posted: Thursday, June 4, 2015 4:13 PM
Joined: 9/12/2013
Posts: 3549


Llee -

I am unaware of what happened to you and Iris. I thought there was a discussion about caregivers posting here - so when I looked again at the forum list of message boards I saw one stated "I HAVE dementia" and the next said "Younger onset..." as if it were a topic, not directed to patients or CGvrs. So this post was to maybe change title to I am living with EOAD instead of just EOAD.

Now I am wondering if you and Iris thought I was part of not understanding your grief over some of the things posted here.

I have been shocked in past when I would go browsing CGvr boards so I pretty much quit doing that. However, I never intended to dispute anyone's feelings about anything and if I came across that way I am so sorry.

Iris being gone has many of us worried, I don't think she would just quit, but maybe she said she was leaving and I missed that too.

Please help make the board a place you feel good coming to, even if a break from posting is needed. I do love all of you.

Maybe it is because in my own situation my husband did not seem real gung-ho to alter his way with me for what seemed a long time after my diagnosis. What was just a bad mood or cabin fever came across as cruelty when we understood my own mood swings in context - and still we came around because I would not give up trying to get through to him. My family does not understand - after watching my Dad live with ALZ! They want me to be "different" and think of them!

Well, turns out the whole family is affected and I needed to develop some patience and compassion for all my husband was enduring and losing.

If that seemed in any way to be coming down on you or any one else - gee, I did not mean it that way at all.

Now what would help this situation? Help me understand if I do not.

love and courage



alz+
Posted: Monday, June 8, 2015 6:53 AM
Joined: 9/12/2013
Posts: 3549


Did the board change titles? Or did I never notice that beneath Early Onset AD it reads "for people living with EOAD" ?

I think things are super clear and obvious and then find out I was so wrong - it confounds me.

Anyway, that seems really clear.

I am waiting for the section entitled "Ask A Person With Dementia" ... it does not seem like caregivers get our perspective when they speak to each other. It might help and it might be fun.



Paul Hornback
Posted: Monday, June 8, 2015 9:27 AM
Joined: 8/9/2013
Posts: 584


llee, I am so sorry you feel this way. No one every intended to hurt you, not understand your views, or belittle your opinion. I believe that you and Iris were upset and hurt over this issue.

I wish we could have a separate board for CG's of early onset patients. It is desperately needed because these folks face different issues than those CG's with Alz patients that are much older. This would truly help with the issue facing our board.

Perhaps we can keep preaching this so that eventually they will add a category for these folks. I hope you will continue to participate on this board as we so value your input, friendship, encouragement, and insights into living with the disease. This goes for Iris as well. We need you and miss you both.

God bless,

Paul



TayB4
Posted: Monday, June 8, 2015 12:08 PM
Joined: 8/8/2014
Posts: 828


Paul,

I am a spouse/care giver to someone with EOAD, and I agree that we need a board specific for that. Our concerns are very different than those with older LO's with Alz. I have submitted my viewpoint to the Administrators, and got a very nice response that it is being considered. That seems to be the response that people get when they submit something to the Admin from what I have read on here! I am hoping that others caring for someone with EOAD will request this from the Admin. Maybe if we have enough people asking, they might do it.

Michael Ellenbogen
Posted: Wednesday, June 10, 2015 9:57 AM
Joined: 11/30/2011
Posts: 2654


I probably don’t deserve to comment here because I rarely use this site for the exact reasons mentioned now and in the past to me. Everything so overly censored and the people who are moderators, some need a new position. It is sad that AA does not recognize that. I also believe there should be less input by the moderators as an agent of AA. Its okay if they speak under their own name. But they come across with power when the do that. I personally have been attacked so many times that I only come here when I absolutely have to. I also happen to be lucky to have some good friends at AA to stand up for me. I know for many that is an issue. I would recommend to escalate matters as you see them and just don’t except the first moderator. Sometimes I have found they are very biased.

As far as this part of the thread, to the best of my knowledge which was created many years ago was suppose to be for only those with dementia. The reason for that in my opinion is because some horrible things are shared by caregivers and we just don’t want to know or her that side of the disease.

I really like the idea having a place where caregivers and others can ask about real answers form a person with dementia. I do that a lot with medical staff and others. A lot can be learned. The only concern I have with doing that her is that people her are so afraid to speak the truth because of how this site handles things. I would love to help a site that is truly open to helping others that way. Maybe someone who has must talent then I can create such a place. “Ask a person with dementia what you always wanted to know but afraid to ask”


Geeber
Posted: Wednesday, June 10, 2015 12:38 PM
Joined: 5/28/2015
Posts: 18


I like the idea of changing the discussion board title as suggested by our friend alz+.

Because I'm so new to the boards I'm still managing the learning-curve for postings and getting acquainted with personalities who I view as wonderful people. I understand the value of a support system whether we be the one who's been diagnosed with EOAD or those who are devoted CG's.

I recognize when I mis-speak at family gatherings. I comment on first run topics long after they've evolved into something irrelevant to my slow paced perceptions and comments. I recognize when I wander the house, directionally challenged, trying to manage and remember mysterious steps towards forgotten objectives. When I write these paragraphs, I pry words from rusty brain cell drawers, rearranging those words until they make sense according to my commands.

I worked a couple years as a maintenance supervisor in a senior care facility. I got the job because I enjoyed working with my hands and owned decades of mechanical knowledge. I also expressed to the interviewer that working in an eighty unit facility full or seniors would be a pleasure for me. I quickly understood the senior care facility dynamics. I understood why there was need for two separate sections for the complex. Because of attachments to several residents, there were times that I hurried to my locked maintenance room/office and had a good cry.

I've observed first hand the various stages of dementia while working in that facility. Although I worked in a maintenance supervisor capacity for the facility I also participated in their educational programs that helped all of us better understand the resident/care giver connection and management of resident needs. I don't particularly fear dementia, because when ever I see it face to face, I still see the faces of care giver's and those adorable stricken seniors who called that place home.

I no longer lead, but now simply follow.


kwc
Posted: Wednesday, June 10, 2015 3:18 PM
Joined: 5/22/2014
Posts: 37


Very. Well said as I am 54 soon to 55 an have early onset ALZ I can relate as I feel sometimes I am a couple steps behind an sometime labor in my conversations I try to stay busy somewhat hope u do also
Mimi S.
Posted: Wednesday, June 10, 2015 7:59 PM
Joined: 11/29/2011
Posts: 7035


So many things to comment on.

I like Alz+'s suggestion for a name change. She is also correct in saying that the very next line says just what she wrote. Most people jump at the first line.

This site, as well as all sites, are monitored by both Administration and the Peer Volunteers. As Peer Volunteers we promise to monitor all spaces. Before such a designation I was mostly on the I Have AD. It took until I was designated a Peer Volunteer that I even ventured here.

Yes, the Younger Onset Families have unique problems involving children and jobs But, if you go back over the past few months, how often have these been brought up/

The same goes on the Caregivers side. Yes, being a partner/spouse presents special problems Go back on those boards a few months. How many of the topics on the Spousal Board could not be equally at home on the regular caregivers.

Certainly same sex partners also have unique problems, but see how little that new board is utilized.

We Peer Volunteers have phone meetings and the number of boards have been discussed. The more parts we split into, the less we learn from the group as a whole.

This is off topic but: The same goes for private connections. I do accept private connections for those with the disease. Except, must of us don't seem to have the know-how to use it. In my opinion, most of the problems we have should be shared with all.

There are some exceptions to my own personal rule about Connections. Once a caregiver had a dad who had Myasthenia Gravis, which I also have. That doesn't belong on these boards and so we did communicate for a time about that.

For those who live in a specific community , the connections are a great place to share information about local doctors and facilities.

We had a loss of folks a few years back when a new place on FB was set up and the leader did not like all the rules here. Some of those folks returned. I was kicked out of that group because I challenged some "factual" statements.

The rules here are especially designed for we, the patients, so that we are not scammed or belittled, etc.

There are always folks who come and go. Some get a specific question answered or the crisis is over, or they are just too involved in being a caregiver.

Another quote from Aliz+: Well, turns out the whole family is affected and I needed to develop some patience and compassion for all my husband was enduring and losing.

This is so true. Among many folks I've known with the disease have been my fraternal aunt and uncle. And now a sister-in-law with a different type of dementia. So, I've seen and understand both sides. Being a caregiver of a person in mid stage with huge behavior issues is extremely difficult.

Those of us in Early Stage usually prefer the term:care partner because that's just what we are. We are still capable of doing many things ourselves.

To get our perspective, care-givers are perfectly welcome to come and ask questions. Several of you have indicated in the recent past that you do not want caregivers dumping or venting on "our" boards. And that is understandable. We (read I) would prefer to believe that will never be me.

Long enough.

Good night friends.