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I Have Alzheimer’s or Another Dementia
My reply to the caregiver myth that we become empty vessels
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.
"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
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,
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.
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.