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My reply to the caregiver myth that we become empty vessels
alz+
Posted: Friday, May 15, 2015 8:37 AM
Joined: 9/12/2013
Posts: 3333


This is for Iris and everyone feeling fearful. I posted this on care giver board today in preparation of giving this view tonight at a showing of Still Alice during a panel discussion of perception of Alzheimer's.

I am taking your pain and talking about it tonight at a Still Alice movie showing hosted y Dementia Network of Wisconsin.

to caregivers:

"I have ALZ and took care of my father who had it. Please consider these words from someone with the illness who "forgets" names. The illness make retrieval of words difficult. We do not become blank, we are not empty vessels, consciousness is much greater than being able to come up with a word some one wants to hear fast enough.

To imagine we are "forgetting you" is a toxic mythology that causes you much more pain and suffering than the truth. Short term memory loss is not as big a deal as the loss of being able to say and do (the capability to express) what we feel inside.

Naming someone or being able to say "Hello wife, I love you!" is not the equivalent of forgetting some one, our marriage, or love. I can tell you even when my father could no longer talk we communicated through loving touch, eye contact, and my happiness to have him still alive and well cared for.

Tonight I am being asked by a Dementia Network to offer my views as a patient that we are set to fail by this kind of thing. "Grandpa doesn't know me anymore!" Not true. Grandpa may not be able to answer your repeated questions, may not be able to a word name on your face fast enough to suit your idea of being KNOWN, but if some one does not take that child aside and say he does know you and love, always will, but his consciousness is wandering through old memories now because of some changes in his ability to CONVEY to you what is in his heart.

There is a rising tide of patients who can still speak and a group of people who have been involved in Alzheimer care for many years who are coming forward to change this self fulfilling despair.

During my father's dying we lay next to each other feeling very close and loved. Just before he died my children arrived, their plane had been delayed. I told him "Your grandkids are here Daddy." and he blinked and the tension near his eyes relaxed.

I knew he was listeing to them as they talked. There was a moment when I felt called to his side and I asked himwhat is it Daddy?" and it was as clear as if he had said the words, "Will you take care of my wife?" My Mom. My Mom who was fed up with the "damn illness", the hospital, the broken hip, her loss of having him as her date and companion.

I told him not to worry, my brother and sister were with me and we would watch over her. When I said that, his opened, clear and alive as ever and he smiled the smallest smile, took his last breath and died holding my hand. He gave me one last hand squeeze.

It was clear to me HE had been forgotten, people were done with him, but he had not forgotten. I won't go on here about my beliefs but if I were in your shoes, which I am not, I would get a lovely dessert, read him a letter of all the happy anniversaries you treasure, sit close to him, love on him, stop asking to name me or my position in his life, and feel him as the man you loved before.

Some of the people who have been diagnosed are suffering from reading these posts about how we are perceived and thereafter treated. But I have had many experiences providing care for people with dementia ,and now myself, and will not allow that kind of misrepresentation to go unchallenged in my presence.

I love your husband and feel for his struggle, I sense his despair that he can not perform in a way that would satisfy your emotional needs now, and the more you come to visit feeling he is this empty vessel who does not know or care the more he will withdraw from that energy. I would too.

You believe what you want but this is a common hallmark held by care givers that is causing unnecessary suffering."

I think I lost part of that original post but, let us counter the myth as often as possible, first of all in our own hearts and minds.

love and courage


AJsmiles
Posted: Thursday, May 21, 2015 11:05 AM
Joined: 5/21/2015
Posts: 3


Thank you! Thank you! Thank you for this post! This is exactly how I felt when I had cancer, now I can see why the people around me acting so crazy. Now, I can stop acting so crazy about my Grandmother's alzheimers. I feel like an asshole and its a beautiful thing.
Jo C.
Posted: Thursday, May 21, 2015 3:02 PM
Joined: 12/9/2011
Posts: 9394


Hello AJsmiles, and welcome to the Message Board. I am sorry to hear that your beloved grandmother is having health issues and can understand how upsetting that must be.

It sounds as though some of her family have helped get your grandmother into an assisted living sort of setting, but that she has not yet been formally diagnosed with dementia.

It is extremely important that she have a complete physical exam from head to toe, because there are multiple different conditions that can mimic dementia, but they are easily treated.

And; if she has a negative physical exam, then it is good to get her to a good dementia specialist such as a very good Neurologist who sees dementia patients as a routine part of his/her practice. Neuro is best at diagnosing for the type of dementia that may be present and this is important. There are multiple different kinds of dementia and meds for one may be contraindicated in another.

If grandmother does indeed have Alzheimer's Disease, there are medications that can slow down the process and even help to assist with her functional status.

This is a pleasant Message Board whose stated policy is to have positive support for others living with dementia, and we can all write (post) wherever we wish; however, I also invite you to write about your grandmother and any concerns/issues on the Caregivers Forum. That is where most of the family members communicate and is better attended by a larger group of people; you will get a lot more input to your posts there. You can post on both Forums or any Forums as you wish.

I so hope all goes well for your grandmother and that you can become a positive support for her too. If you can do some reading, you will find a wealth of information. The Alzheimer's Assn. also has a Helpline at (800) 272-3900. There are a lot of different educational materials and they can assist you with that; and they can also help to support you or other family members who may wish to call. There are no fees for this service.

Any of your family members are also welcome here; we all try to support one another in a positive manner and we certainly do understand the journey as we are all on a similar one or have been on a similar one.

Best wishes coming to you,

J.


wwkayaker
Posted: Monday, May 25, 2015 3:54 PM
Joined: 3/4/2014
Posts: 32


alz+ thanks for your post, your reflections on caring for your father - I also cared for my mother with AD - were spot on. You honored him by your dedication and caring and realizing that despite the progression of the illness that he was not a empty shell but your dad. I felt happy to be with my mother as she died the passing was peaceful and she was ready. I now have AD and am having more difficulties as a result but want to shout I'm still in here, please listen to what I have to say and don't write me off just yet. You said it better alz+ thanks again.


Lesley Jean
Posted: Tuesday, May 26, 2015 8:58 AM
Joined: 2/13/2013
Posts: 2965


Alz+,
Please go on the spouse and caregiver forum and read Bi Coastal's" he has forgotten who I am after three months in care."
Your posting regarding this topic was very hurtful to BiCoatal.
Thank you,
LJ


llee08032
Posted: Tuesday, May 26, 2015 12:03 PM
Joined: 5/20/2014
Posts: 4391


alz+

Truly a lovely post that helped so many! The soul, the heart and the mind does not forget! I believe or want to believe that in the later stages we will go back and forth in time. perhaps we may stay in the earlier times, regressing backwards for longer periods but will waver back to the present for shorter periods. Perhaps when we do come back to the present for those periods or lapses of time our loved one's will not be physically present to witness this. Consequently, wherever were at in time we will never be empty vessels. Our early years in life are as meaningful as the rest. The staring off though uncomfortable for others to see is actually calming and peaceful to me. I feel I could stare off for hours on end and can't always remember where I am at in time but it feels safe and peaceful. I will make a point in telling my family this. That I am not vacant or empty but I am somewhere else in my mind.

Please keep on speaking up for us alz+! We have a right to our say and our opinion and to speak for those of us who are silenced by this damn disease.

BTW: CG's come to our board all the time, hurt our feelings and scare the hell out of us with horrific stories. WE have feelings too. alz+ has a wonderful perspective and a unique of thinking differently about dementia from a patient perspective. No one can argue the point that OUR voices have been put on the back shelf and WE have been silenced for too long! Please respect our board and our feelings too.

dayn2nite
Posted: Tuesday, May 26, 2015 5:58 PM
Joined: 12/18/2011
Posts: 3097


The heart never forgets.

If bicoastal is upset that's a shame, but disrupting this thread with that announcement wasn't necessary.

Lesley Jean
Posted: Tuesday, May 26, 2015 7:39 PM
Joined: 2/13/2013
Posts: 2965


This is what was posted to BiCoastal, by me who was very much hurt. I have included my response, as a wife of one who has this horrific disease, nurse and counselor.
I stand by my words that we do not know and should not pretend to know all.

BiCoastal,
I am so sorry for your hurt, your husband not recognizing you and your experience about your life, feelings, thoughts, and hurt being talked about. This is a place where we should feel comfortable talking about our fears, hopes and experience. I am very sorry that this has happened to you. I am really hopeful that no one would have laughed or thought less of you for your feelings. If they did, then they are cold and callused people who do not deserve a moment of your attention. You are wonderful caring, loving person, care giver, and e-friend. I feel privileged to know you.

Alz+
I understand your well intentions of trying to teach others what you, personally are experiencing. You are wonderful for talking about your personal experiences, feelings and your sharing your professional knowledge. I congratulate you on your efforts to bring awareness to others. We do need awareness of this disease.

I think it is wonderful that you are sharing your own experience, but, it is just that. Your experience. But, I have to ask, how do you know if a person in stage 7 knows who their lo is? You are not there. You may believe, in your own heart our lo knows. But, you are not in stage 7. Therefore, do you really know? Your father may have had the blessing of knowing his lo, but others may not be so blessed. Do we really know if they remember? Do we really know if they have totally forgotten? Do we really know if it is a temporary break through? I don't think we can ever, really know? No one has come back from this horrible disease and said, "I never forgot, I just couldn't say I knew you."

I am not writing this to provoke hard feelings or to judge anyone. I am on this board to share my feelings, talk to those who are nonjudgemental to my actions and feelings, To listen and learn from experiences and to share mine. We may disagree with others, but, again, we are not in that person' s shoes, carrying that person's baggage. We come from all walks of life with various experiences and that what makes this.forum so great!

I was told by Jerry's doctors at Johns Hopkins that the brain dies off, a little at a time. I believe that. I also believe that parts of the brain, may come back, to life, temporarily., for a short period of time. It might be that during these brief moments, our lo's might recognize us and/ or remember. Every one has a different experience during the progress of this horrific disease.

I am glad I can come to this forum and express my heartaches, my feelings, and learn from others. I do hope what I post stays here and is not shared. As a Registered Nurse and a School counselor, I believe in confidentiality and practice it throughout my life.

Love and hugs to everyone and thank you for all you do,
LJ

llee08032
Posted: Wednesday, May 27, 2015 8:47 AM
Joined: 5/20/2014
Posts: 4391


Dear Lesley Jean,

I have to agree with day2night If bicoastal is upset that's a shame, but disrupting this thread with that announcement wasn't necessary...

Every one has a different experience during the progress of this horrific disease.

I am glad I can come to this forum and express my heartaches, my feelings, and learn from others. I do hope what I post stays here and is not shared. As a Registered Nurse and a School counselor, I believe in confidentiality and practice it throughout my life.

I hope you realize that if this was a clinical setting you would have breached the confidentiality of both Bicoastal and alz+.
Some of us patients do not appreciate hearing how "horrific" others feel the disease is and such type of language on a patient board can be frightening. Cancer. diabetes and heart disease can be "horrific" diseases also. One of our valued and loved members recently left the board over CG posts like this. Please pray for her, for alz+ and us. Think of our feelings just for a minute. Would cancer patients on a support forum want to hear about their organs being eaten away by the cancer when they are struggling to survive for as long as they can?

The post your referring to was posted on May 15th almost 2 weeks ago. I'm sure by now Bicostal has moved on and has other concerns. Perhaps it is time to let this go? Let bygones be bygones and move forward. There is no need to go back and forth and debate whose plight is more difficult. We are trying to stay positive, stay in the present and source our energy and focus on living meaningful lives to the fullest the best we can! Please let this go and stop frightening us with graphic depictions and your perceptions. You are a counselor and nurse and should know better to split hairs with the patients. This is OUR safe place!


King Boo
Posted: Wednesday, May 27, 2015 9:27 AM
Joined: 1/9/2012
Posts: 2891


It is great that people come to care about each other on the discussion boards.

Llee is correct in noting that Bicoastal has received an out pouring of support to help her; thanks to the lovely members of the discussion board, no more intervention is needed (triangulating is often counter productive).

While the boards are for all to use, I would strongly suggest that posts referring to Alzheimer's with adjectives such as "horrific" not be used on the I have Alzheimers or EOD boards out of respect for those people who mostly post on this particular forum, those who are diagnosed with Alzheimer's. A person seeking the expertise of those who are living well with a diagnosis of the disease is appropriate; a post painting a bleak picture or extreme emotional distress of a caregiver would be better suited to the caregivers forum.

The world of on line manners is complex; while it is easy to sometimes forget where we are posting, a little fore thought will go a long way in achieving tact. I would counsel against migrating deliberately to a board with the intent to chastise, correct or insult. There have been occurances of this nature on both sides of the coin, lately, and it would be an positive thing if it ceases.

Be thoughtful. Let's choose kind......amazing things can happen.


Lesley Jean
Posted: Wednesday, May 27, 2015 11:44 AM
Joined: 2/13/2013
Posts: 2965


I am being thoughtful. I am thoughtful that BiCoastal should have received an apology or at least an explanation as to why she felt that she was being betrayed. After feeling that she was being talked about and laughed at, she was planning on leaving the boards. She is an intricate part of this forum and I for one do not want her to leave.

As Alz+ continues to post what her experience has been, others may feel as BiCoastal feels. I am sure, as previously state, Alz+ has no ill intentions and only means to bring awareness to others. But, it is only her experiences and her experiences are not the same as others. I feel she should be aware that although she is attempting to do good and is doing so much, she may be hurting others.

As far as me breaking confidentiality, I have not. I have not said anything the was not written for anyone on this forum to read. Anything that I copied and pasted or that I posted, was not told to me in confidentiality and has not gone past this forum. According to what Alz+ said in both her threads, she has spoken of other's experience and this could be construed, as it was by BiCoastal, that she is talking about her.

If using the word horrific offends anyone, I am truly sorry. I would never want to hurt anyone or make anyone feel uncomfortable. I am watching my husband decline, rapidly. The word horrific is a word that in my opinion describes what I am witnessing him go through as well as the affects it is having on my and my family. Again, I apologize.

LJ

llee08032
Posted: Thursday, May 28, 2015 8:19 PM
Joined: 5/20/2014
Posts: 4391


Boo King,

Thank you for your post. I felt understood, supported and not condescened to as I do at times. I feel like you really get this and that you get us! Please know that it meant a lot to me and perhaps some other patients also whom are struggling on our board right now. Thank you and bless you!

King Boo
Posted: Thursday, May 28, 2015 9:25 PM
Joined: 1/9/2012
Posts: 2891


I am so glad!
 
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