Cheering Fair Use Win!

This morning I received an email from WordPress, this blog’s host, that Michael Ellenbogen had made a DMCA Copyright complaint against the post that reviews and critiques his book. The quotes are mere excepts from the book in order to give readers the taste and flavor of the book, and a link was even posted for you to buy the book on Amazon.

EMAIL: “We have received a DMCA notice (https://www.eff.org/issues/bloggers/legal/liability/IP#dmca) for material published on your WordPress.com site. The notice we received from the complainant follows. BEGIN NOTICE First name: Michael Last name: Ellenbogen…Normally this would mean that we’d have to disable access to the material. However, because we believe that this instance falls under fair use protections, we will not be removing it at this time. Section 107 of US copyright law identifies various purposes for which the reproduction of a particular work may be considered fair, such as criticism, comment, news reporting, teaching, scholarship, and research. You can learn more about that here: https://en.support.wordpress.com/fair-use/

Now WHY anyone would self-publish a book and put it up for sale on Amazon IF they did not want the content read, talked about, written about, or critiqued is sort of beyond me…as in a level of crazy that is well beyond this author’s scope and training, but ok…there are all kinds of people in this world. I mean, free advertising is…well, free advertising. While it is certainly understandable that Michael Ellenbogen does not LIKE that we criticized his book or wrote a dissenting review, I learned in this email that I can actually go after Michael legally for making a false DMCA Claim against us…as can WordPress (apparently they won $25,000 in a false claims suit), LOL I guess it is just good news day!

Thank you WordPress for being one of the many companies that fight in the background for our freedoms everyday.

Copyright April 10, 2017, all rights reserved.

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Posted in Still Life With Dementia | 1 Comment

WARNING – About “Dementia Advocate” Michael Ellenbogen

Recently we had to temporarily privatize my mom’s blog (until we could take all identifying information out) because Michael Ellenbogen has been making death threats to our family, and disseminating our address and inciting others to come harm us, as well as threatening to post my daughter’s address on pedophile sites.  We had hoped that he was just being a dick, but it went on and on and got worse.  Although it began in January, over the last three weeks it became constant, continuous, and overwhelming, and the Alzheimer’s Association did nothing to remove the posts as we reported and flagged them (in the last three weeks, over 150 threads and posts were made, day and night).  This week we had someone parked outside of our house taking pictures of our house and wander in our yard, and following us in stores, and take pictures of us and our car.  We take these threats very seriously, and are in fear for our lives (particularly, my daughter’s).  This has been very distressing for us.  We have contacted the authorities, and hopefully they will do their job and make us proud to live in the great community we do.

To help mitigate the danger, we are asking that those of you who have ANY personal information about my mom (or us) to please NOT share it with ANYONE.  Thank you.

Unfortunately, it has also come to our attention that Michael Ellenbogen is spreading lies and misinformation about my mom, and indeed, our whole family.  If Michael Ellenbogen (or any of his followers) have told you ANYTHING about my mom – DON’T BELIEVE IT!  Michael has NO knowledge or information about my mom…so if he, or his friends, have been spreading rumors to you about her (or us), DON’T FALL FOR IT.  Instead, please report it to us.  Thank you.

My mom’s friends know how to get ahold of us, I am happy to share with you what is going on directly.

Sorry for any confusion this has caused.

Posted in Still Life With Dementia | 1 Comment

Book Review: From the Corner Office to Alzheimer’s by Michael Ellenbogen

 

 

In my journeys after diagnosis of dementia and then Alzheimer’s, I have met Michael Ellenbogen, and he shared his book with me. It read like a diary me and he detail his numerous neurological exams, PET Scans, and most importantly, his neuropsychs…which might have some informational value those waiting get their neuropsych results see what they look like. While I commend Michael for his honest reporting of his evaluations, I find myself a bit confused as I read his book because his scans are essentially normal and unchanging through the years, he report levels of dysfunction in his book that he does not report or show evidence of in person, and his neuropsyhcs don’t show the appropriate pattern of dysfunction essential for a dementia diagnosis. Although, quite a few people DO, in fact, experience trouble with getting a diagnosis…I admit I am perplexed by a 10 year effort that showed little decline. It certainly is an interesting read.

Some Quotes from his book:

Page 19

In August, I had a Brain ScanW/Spect. Here is the report:   The interhemispheric fissure appears slightly widened for age. The distance between the caudate nuclei appears slightly widened for age. The activity in the pons was moderately increased when compared to the results in most other patients and health volunteers. There was minimally decreased activity in the medial aspect of both temporal lobes.   The impression included the following:  The study fails to detect a cause for the cognitive impairment. The minimally decreased perfusion in the medial aspect of both temporal lobes is not a specific finding. It is frequently seen in healthy human volunteers as well as patients with true hippocampal dysfunction.”

Page 20

Another EEG was requested by Dr. Grossman, which I had in August of 1999. The impression said: This is a minimally abnormal EEG because of slowing of the alpha rhythm to 8-8.5Hz in frequency. This minimal slowing of the alpha rhythm is nonspecific abnormality that can be seen in a setting of any toxic or multifocal structural encephalopathyIn September, I met back with Dr. Grossman. He looked over all the results and he was not sure what was causing my problems. One thing that was interesting, when he looked at my MRI he made the following comments. “The MRI scan demonstrated some minimal superior parietal atrophy that can be seen in a setting of normal aging.” He wanted to see me back in six months and to repeat the Neuropsychological testing.”

Page 22

Her summary and recommendations were:  Current level of overall intellectual functioning is in the average range, with no significant discrepancy between verbal cognitive skills and nonverbal reasoning abilities, There is no significant change in overall intellectual ability in comparison with the evaluation in June of 1999. On neuropsychological testing, Mr. Ellenbogen displays generalized psychomotor slowing and inconsistent impairments in attention, concentration, and memory. In comparison with the previous evaluation, a variable, inconsistent pattern of change was demonstrated, with improvements on some measures and declines on others. This pattern of performance is not suggestive of focal or lateralized organic cerebral dysfunction, and is not consistent with the presence of a progressive cognitive disorder. Rather, Mr. Ellenbogen’s neuropsychological test performance suggestive of fluctuating levels of attention, concentration, and performance speed. Objective psychological screening suggest the presence of mild to moderate symptoms of depression and anxiety, and an introspective, perfectionistic personality style. These psychological symptoms are most likely playing a significant role in Mr. Ellenbogen’s subjective cognitive dysfunction.

Page 24

I went back for counseling from May through June of 2001. Talking made me feel better, but it did not help with my issues. I was amazed by the ways I kept finding to deal with my memory issues. I kept finding new tricks to simplify my life. It was my way of trying to survive. It was a good thing I was accustomed to change. The counselor’s impressions were: Client and wife reject the physician’s notion of depression as a cause and, although many of his symptoms could be seen in a depressed individual, in terms of affect, mood, motivation, energy, etc., he does not fit the usual picture of depression. It seems that stress, anxiety and difficulty relaxing may be underlying factors.

Page 46-48

After about 10 years since my symptoms began, my frustration level was very high. It was becoming too hard for me to hide this from others. I had to work so much more than my colleagues did. While I always enjoyed the opportunity to work, it was just too overwhelming trying to keep up. I lost many years of my life, without knowing why I was becoming this way. I have to tell you this is very scary. Sometimes you think that you may be losing your mind.  In January 2006, I met with my family doctor and informed him that I wanted to start a new work-up. I wanted all new doctors to look at my memory and processing issues. I did not want the new doctors to see the old records, because I did not want their opinion to be influenced in any way.  I was sent to Dr. Roy A. Jackel, a Neurologist. I told him that I had seen other doctors but no longer had the records. I wanted him to start as if I were a new patient. He ordered new lab work, EEG, MRI and some neuropsychological testing. The good news was that my new insurance did not require going back to my primary doctor.  The EEG report found nothing abnormal. I had two different brain MRI’s. One MRI with, and one without, contrast. Both tests of the brain came back normal.

I went back to Dr. Lindsey J. Robinson, the Clinical Neuropsychologist, in January. She was going to redo the neuropsychological testing. I thought it would be best to use this doctor again because she had a baseline for me and could compare my new results with the old. It would take months for the results. The other issue was that there were not many doctors, who performed this test, that were covered under my health insurance policy.

In June, just a few weeks after my 48th birthday, Dr. Lindsey J. Robinson finally got back with the results of my testing. Her results for neuropsychological testing were as follows:  Background – Previous neuropsychological evaluation in 1999 and 2001 revealed fluctuating, inconsistent impairments in attention, concentration, and performance speed, and symptoms consistent with anxiety and depression. Summary and recommendations – Multiple aspects of Mr. Ellenbogen’s behavior and test performance suggestive of inconsistent /incomplete effort during the evaluation. Thus, this test results described are not regarded as a valid representation of his optimal cognitive functioning. Mr. Ellenbogen’s clinical presentation and test are unchanged in comparison with prior neuropsychological evaluation in 1999 and 2001. There is no evidence of progression of cognitive impairments, and Mr. Ellenbogen’s developmental history and current test performance are not consistent with a diagnosis of attention deficit/hyperactivity disorder or any other organically-based cognitive disorder.  Mr. Ellenbogen demonstrated an anxious/ obsessive personality style and some symptoms of depression. His cognitive can be most parsimoniously attributed to affective disorder and/or other motivational or psychological factorsDiagnostic Impression; R/O Dementia (not in evidence) R/O Anxiety Disorder, NOS R/O Personality Disorder, NOS

Her recommendations – Mr. Ellenbogen should be reassured that thorough medical/neurological evaluation on multiple occasions has revealed no evidence of neurological cause for his cognitive symptoms. A trial of psychotropic medication could be considered to address Mr. Ellenbogen’s apparent effective symptoms. He is unlikely to benefit from psychotherapy due to his reluctance to accept a non-medical explanation for his symptoms.

Page 53-54

October 1, 2007. Her summary states:  Mr. Ellenbogen’s performances on the various test of memory were, at times, consistent with recognized neurobehavioral correlates to temporal and parietal lobe dysfunction, but not consistently so. Mr. Ellenbogen’s demonstrated significant impairments in the domains of learning and memory, primarily for verbal information. Current results indicating possible worsening of his verbal memory provide a basis for considering of a neurological disorder, i.e. mild cognitive impairment. Conversely, visuospatial, visual motor, and constructional abilities remained intact, and generally improved which would not be expected.

Impressions:

  1. Mild Cognitive Impairment
  2. Emotional Disturbace
  3. R/O Anexity Disorder
  4. R/O Dysthymic v. Depressive Disorder
  5. R/O Obsessive-Compulsive Personality Disorder
  6. R/O Remote Effects of Prior Head Injury (unlikely)

Page 62-66

Dr. David J. Libon’s neuropsychological evaluation results were available in June. His Summary and diagnosis are as follows:  Michael Ellenbogen is a middle-aged man who was referred for a neuropsychological evaluation because of suspected dementing illness. The patient gives a 10-year history of cognitive decline including difficulty maintaining employment. On the basis of the patient’s self description a primary progressive aphasia appears to be present. Mr. Ellenbogen described increasing word finding, comprehension, writing and spelling difficulty.  Today’s evaluation verifies the patient’s self-report. Performance on all language related tests was quite impaired. Conversational speech was positive for mild word finding difficulty. Word finding difficulty was also seen on formal tests requiring the patient to name pictures and define words etc. Performance on tests that assess comprehension was quite impaired considering the patient premorbid occupational history. Spelling and writing problems were also noted. Mr. Ellenbogen also displayed problems on selected tests that assess executive control and working memory. The verbal nature of these test contributed to his difficulty. Problems were also seen on verbal memory test were a primary amnesia is present.  By contrast, the patient performed very well on visuospatial test such as when asked to produce clock drawings and copy the Rey Complex Figure. Visual memory, as assess with immediate and delayed recall of the Rey Complex Figure, was intact. In sum, the profile obtained today suggests the presence of an emerging semantic dementia.  Diagnosis – semantic dementia

NOTE: This would be FTD….but I find this remarkable, and strange, since Michael Ellenbogen speaks and writes quite well now, 10 years later. I have Aphasia, and not only did Michael NOT recognize it when it happened me, he did not endorse ANY of the symptoms of Aphasia.

Page 64-66

Treatment Plan/ Recommendations

Present & Future Living Situation

1.) A mild to moderate level of supervision is recommended to monitor the patient’s compliance with the patient’s medication regime and everyday activities.

Driving

1.) A driving evaluation should be considered.

Competencies

1.) Mr. Ellenbogen is fully able to make very routine decisions. However, the assistance of a family member is necessary in order for the patient to make complex decision regarding financial matters. In this regard the patient and family should consider consulting an attorney to discuss drawing up a living will, power of attorney, and related issues.

Activities of Daily Living

1.) In order to facilitate the patient’s independence, everyday tasks should be made routine. Also, wherever possible, Mr. Ellenbougen should rely on past knowledge. For example, the patient might have comparatively little difficulty preparing a meal with familiar utensils and ingredients in a familiar environment. However, tasks requiring the use of newly learned information, or in situations that are not familiar will be more problematic.

2.) The patient should be encouraged to perform only one task at a time, and the patient should not be interrupted while performing activities. It will be more difficult for the patient to perform activities of daily living if engaged in conversation. In addition, environmental distractions (e.g., television, radio, etc.) should be kept at a minimum to allow the proper focus to complete the task at hand.

Language and Communication

1.) The family must not assume that the patient comprehends what is being said. Just as one can repeat a phrase in a foreign language, but not know the meaning of the words, dementia patients may be capable of repeating verbal information even when the meaning of words is lost. It is important that the family does not assume that the patient comprehends information just because a phrase or sentence can be repeated.

2.) In an attempt to facilitate the comprehension of everyday conversation, caretakers should speak in simple sentences. Gestures and exaggerated prosody may also increase the patient’s comprehension.

Further Diagnostic and Treatment Services

1.) A trial of medication designed to treat the patient’s memory disorder should be considered.

2.) The patient’s depression should be monitored.”

NOTE: That by stating that Michael was not competent handle his financial affairs, this neuropsychologist was essentially stating that Michael Ellenbogen was not-competent any longer.   Again, this is not the Michael Ellenbogen that I have met 10 years later.

Page 67

In August I met with Dr. Libon to obtain his recommendations on what type of work I can do going forward. Below is a copy of his letter of our conversation: I recently met with Mr. and Mrs. Ellenbogen to review the findings of my recent neuropsychological examination. In the time I spent with the family I reviewed my recent evaluation, the prior neuropsychological evaluations, the results of the PET scan, the results of other medical studies  I explained to the family that we are dealing with a primary progressive neurodegenerative disorder. My current diagnosis is Semantic Dementia which is one of the Frontotemporal Dementia Syndromes.  The family asked me about future work. I responded that Mr. Ellenbogen is not able to return to work because of his dementia. I do not believe he is able to manage any type of job. At the time of my evaluation I urged Mr. Ellenbogen to apply for disability.

In September 2008….”

NOTE: So it would appear that Michael finally was able get a diagnosis of FTD dementia.

Page 69

Cognitive Neuroscience Section

Summary of Research Results

Patient Name: Michael Ellenbogen

Testing Dates: September 15th – 23rd, 2008

Introduction Mr. Ellenbogen was examined in the Cognitive Neuroscience Section of the National Institute of Neurological Disorders and Stroke as a participant in our Frontotemporal Dementia (FTD) and Corticobasal Syndrome (CBS) research protocol. Mr. Ellenbogen is a 50 year-old right-handed male with 14 years of education. He was most recently employed as Data Transmission Analyst – his retirement was related to his current symptoms. Mr. Ellenbogen has symptoms reportedly compatible with a diagnosis of FTD – semantic dementia subtype, but at the beginning of our evaluation it was uncertain what his final diagnosis would be. He was accompanied to our evaluation by his wife Sheri and an extensive family and medical history is available from the family.  This report is a summary of research data and is not a clinical neuropsychological report. No clinical implications should be made about diagnosis or therapy. Test Behavior Mr. Ellenbogen demonstrated excellent effort during the testing and had an excellent grasp of test instructions. During the testing, he demonstrated very mild conceptual disorganization, anxiety, memory impairment, depressed affect, and language deficits.

Page 71

The patient’s performance on a Driving Simulator was mildly impaired and included one collision, one hit pedestrian, and a speeding ticket. His memory for billboards contained in the simulator drive was severely impaired. At the time of this evaluation, the patient was still driving.”

Page 72-73

Summary  Mr. Ellenbogen’s overall performance on our experimental neuropsychological evaluation is incompatible with his reported 11-year history of behavioral symptoms suggesting that his diagnosis is currently uncertain. The visual inspection of Mr. Ellenbogen’s MRI scan by a neuroradiologist revealed a normal brain with no obvious atrophy. A visual inspection of Mr. Ellenbogen’s PET scan indicated that he had mild reductions of glucose metabolism in some areas of the temporal and parietal lobes in both hemispheres. Primary visual cortex, cerebellum, and subcortical structure glucose metabolism was viewed as within normal limits. These findings are not compatible with the typical course of a FTD. Mr. Ellenbogen’s cognitive abnormalities are compatible with the mild severity and pattern of abnormalities noted on his PET scan. His MRI scan was read as normal. These research findings would not support a clinical diagnosis of FTD – semantic dementia variant given the length of time of symptoms, the minimal findings on MRI and PET scanning, and the pattern of deficits noted on his neuropsychological evaluation. While his history, neuropsychological testing and PET Scan point to a very slowly progressive dementia, at this time, we are unable to provide any more specific a diagnosis.”

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Book Review: What The Hell Happened To My Brain – Living Beyond Dementia by Kate Swaffer

 

After I was diagnosed with dementia and came the forum (and found very little understanding or support for how it is be diagnosed with a terminal diagnosis), I searched the internet for DASNI which, disappointingly had gone quiet, but I came upon Dementia Alliance International or DAI and met a bunch of amazing people who had been likewise diagnosed with dementia (and understood what it was like be diagnosed with a terminal condition), and in particular, I met an amazing woman named Kate Swaffer.

Kate Swaffer hails from down under in Australia, where she is changing the face of dementia care there. Kate took me (and indeed, many of us) under her wing and helped empower us find our own voices as dementia advocates. It took a long time, it seemed, for Kate’s book come out…but I was among the first order a copy.

Kate Swaffer is a much loved friend of mine so I hope she will not mind my shameless plug of her and her book.

Some Quotes from her book:

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Chapter 11 Early vs Delayed Diagnosis

It can take many people years to get a diagnosis of dementia, in fact, many years sometimes for your doctor to take you seriously, and not put your symptoms down to things like depression, menopause, middle age, stress, anxiety, or perhaps even more likely possibilities such as post traumatic stress disorder. Many other conditions also have memory loss or cognitive impairment, many only temporary, some with ongoing cognitive deficits or symptoms. For younger people it can take at least three years to get a confirmed diagnosis, and some have even told me it took them that long just to get a referral to a specialist. Unfortunately, the medical and nursing profession is not as well educated in dementia as they are in most other diseases, and this is an issue that universities and the health sector need to address.”

Early Or Timely Diagnosis

The purpose and value of early diagnosis of dementia is timely access to information, advice, and support, and access to a pathway of effective treatment and care from time of diagnosis to end-of-life care, and to enable interventions that may only work or be suitable in the earlier stages (Alzheimer’s Disease International 2011).

Early diagnosis for people with the symptoms of dementia is essential as they may still have the ability to think logically, even though their powers of reasoning may have started to be impaired. They will more easily beable to discuss the implications of the illness and how it will effect them and their families now and in the future, and it is the time when decisions regarding future care needs and financial and legal issues must be considered, while the person with dementia still has legal capacity.

Giving the diagnosis at this early stage is not that different to the diagnosis of any other chronic and terminal illnesses, in terms of the discussion process.   Obviously it is important to remember the person with dementia may already be experiencing memory difficulty, and therefore time must be taken to give information in ways it can be retained, including repetition, printed information, and having other family members present. Engaging the person with dementia is easier at an early stage because they are more likely to be less impaired in memory and cognition.

People with dementia do have a moral and ethical right to be told of the diagnosis; doctors do not have the right to withhold it, even if a family member asks them to. Ethically, they would not withhold a diagnosis of cancer or any other terminal illness, so it is absolutely unacceptable some believe that they have the right to withhold the diagnosis of dementia.

Early diagnosis can empower the person with dementia to improve their own quality of life and may assist them to remain as independent for as long as possible. It offers more opportunity for increased and continued social engagement and community participation, and for things like improving lifestyle, rehabilitation, and new learning- three things found to be extremely helpful in risk reduction of dementia.

It allows us to plan for our futures, including organizing financial and legal affairs and preparing for longer-term or more intensive care requirements. Early diagnosis helps the person with dementia to be in a position to become active in advocacy and education of and about their condition within their own community. Early diagnosis also allows the best outcomes for activities such as brain training, relearning, and retention learning (Bier et al. 2009; Heredia et al. 2009). It also seems clear that the impact of developing a shared social identity among a group of people with early-stage dementia is important in the wellbeing and happiness of these patients (Bright et al. 2008).

Early diagnosis and therefore earlier intervention, especially of persons with younger onset dementia, may also allow the person to stay in paid employment for longer, reducing the cost impact to families, and ultimately governments. It is also vital to delaying institutionalization, and to the shared welfare of the person with dementia and their loved ones.”

Posted in About Alzheimer's And Dementia, Living Powerfully with Dementia, Still Life With Dementia | Tagged , , , , | Leave a comment

Book Review: Dancing With Dementia – My Story Of Living Positively With Dementia by Christine Bryden

 

Dancing With Dementia by Christine Bryden was one of the first 2 books that I read right after being diagnosed with dementia and realizing, quite shockingly, that I was going die…and it remains the book I am most likely gift others being diagnosed with dementia, and/or recommend they get upon diagnosis….for the simple reason that Christine Bryden writes about the experience of what it is like have dementia in the most eloquent and poetic of ways. Indeed, it is so gently written that reading it was like receiving a warm embrace of encouragement that there indeed was life after diagnosis and that all was not lost. As I read her book, and I would limit myself 1 chapter per night in order draw out its marvelous effect on me, I was often remarking in excitement – “there, there – it is JUST like that” because she would put in words what I had been struggling for so long say. Indeed, I must have copied half her book hand my providers with notes I had written on it…saying read this, this is what I have been trying say you.

So, if you are struggling tell you loved ones, or providers, what you are experiencing….or questioning why some things are so easy while others are so hard…or, if you are a care provider seeking insight, I still highly recommend this book as a marvelous introduction of what it like have dementia.

Christine Bryden was one of the Co-Founders of DASNI, one of the very first organizations of people diagnosed with dementia advocating for our rights. Imagine my disappointment upon finishing her book and looking them up, find that DASNI has gone quiet. However, I am grateful for their legacy and achievement of that we (those diagnosed with dementia) are now finally allowed attend the Dementia Conferences (since 2006).

Some Quotes from her book:

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It is important to think of our lack of ability to speak. In what way does this limit you in valuing us, in giving us dignity and personal space. I know when I am no longer able to speak, I could become violent quite easily. People make you do things that you don’t want to do, and you have no words for, “No, thank you.” So all you can do is push them out of the way because they want to shower or dress you, or give you food you don’t like.

We need to be given the same choices as you, even though we cannot tell you clearly what choice we want to make. And we should not be forced into a pattern of behavior that simply suits the nursing home, or your own ideas of what we should be doing. Think of us as an individual, not just a care-recipient.

Several times, after my talks, I have been asked, “What should I do if the person doesn’t want to get out of their pajamas in the morning?” I usually say, ‘What do you do on a Sunday morning? Do you always get dressed? Do you still sometimes want to go back to bed? Or walk around the house in your pajamas? Does it really matter that he’s still in his pajamas?’

The world goes much faster than we do, whizzing around, and we are being asked to do things, or to respond, or to play a game, or to participate in group activities. It is too fast, we want to say, “Go away, slow down, or leave me alone, just go away,” and maybe we might then be difficult, not cooperative.

This is called, ‘challenging behavior.’ Well, I believe that this is ‘adaptive behavior,’ where I am adapting to my care environment. I am pushing you away when you want me to get in the shower, or spitting out my food because I don’t like it, or going to the toilet in the place because I have forgotten where the toilet is, or walking into the wrong person’s room because I don’t know where my room is. Shower us or bathe us at a familiar time for us. Find out what food we like. Lave the toilet in clear view. If we can’t read numbers anymore, why not mark our rooms with a distinctive sign or picture, something special to us, like a picture of my cat or favorite flower.

If the care environment is focused on the person and their needs, none of that so-called ‘challenging’ behavior needs to happen.

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Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence, You need us to be sick so you can retain your identity as a care-giver, otherwise you might feel threatened if we become empowered in any other role.

In this role, you may soon feel overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, or covering up our deficits, and grieving over our losses, rather than looking for what remains [of us]. You can quickly become exhausted, sad, depressed in despair. We know it is hard for you, and we treasure all that you do for us, and know how helpless we have become, but we want what is best for you too.

At the same time, if we adopt a sole identity as a sufferer of our illness, we learn helplessness. We lose more function, and show and excess disability, where more dementia is apparent than you might expect from the amount of damage we have. This will only add to your burdens as a care-giver, and exacerbate the problem for both of us. It will be a downward spiral to disaster. In this situation, we have become co-dependent, needing each other to accept our labels as victim and sufferer for our identities.

Alternatively, we might cover up our deficits and try to act as if we are normal. This too is a form of co-dependency, because we have put your assumed need ahead of our honest self expression. We want to stop you worrying, to stop this downward spiral, and we pretend normalcy. But as the disease progresses, we can’t keep up this pretense, because it becomes impossible and exhausting, and we become passive and dependent. Suddenly you are faced with the burden we tried so hard to hold away from you, alone.

Co-dependency is unhealthy for both the person with dementia and their family. We can become more incapable than we really are, and you can become more exhausted that you need to be. And neither of us is honest, each of us is journeying alone with dementia, struggling without true insight as to what to do.

We need to move away from labeling ourselves as care-giver and sufferer, towards becoming a care-partnership, in which we accept, collaborate and adapt to new roles within our journey of dementia. I can become a survivor, a person with dementia, you can be my care-partner on this journey. I can be a care-partner with you, communicating my true feelings, my true needs, so you can walk alongside me adjusting and compensating for these expressed needs as we face this struggle together. In this care-partnership, the person with dementia is the center of the relationship, not alone as an object to be looked at, as merely a care-recipient. Instead, we become an active partner in a circle of care.”

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