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I Have Alzheimer’s or Another Dementia
Therapy for PWDs? Not for me
Some people recommend therapy for PWDs but my experience suggests otherwise. I had two therapists, a psychologist and an LCSW. The LCSW tried to discourage me from seeking answers for my difficulties. The psychologist denied that I had cognitive problems. This went on for a year an a half, until I couldn't take it any more and fired her. I believe they were unhelpful because they had the common notion that PWDs are hopeless and helpless.
I do believe that PWDs who do not have anosognosia can benefit from peer counseling. From their peers they can learn that they can confront dementia and cognitive impairment. Can they cure dementia or control it? No. But they can take charge of their lives. This is what I figured out for myself. I learned from my peers, what I could do to take charge and make my life better than it was before. I consider my peers to be not only fellow patients but also caregivers and the Care Consultants who used to post here and at the Helpline.
What I learned in order to take charge of my life was to take steps to improve my functioning and prolong the early stages, to get my affairs in order, and to decide how I want to live the rest of my life. This is what I am doing. It is a work in progress. Just about all I have learned, I have learned from the members on these boards, very little from the outside world. I feel very fortunate to have found these members!
I believe you are right for one reason. Stupidity. Most counselors
are so stupid and know nothing about dementia. They think everting can be fixed
and that is not the case with dementia and instead of trying to help you ways around
the issues they just fail to help. I did have one early on that was fantastic.
I had lost her info and could never find it again. She was great and would go
back in a second if I could only locate here.
In what way did your fantastic therapist help you, Michael?
The LCSW did help me a bit with anxious feelings. But she did not help me understand why I was having anxiety spells all the time. I figured that out on my own.
I would not say they are stupid, but they are very ignorant. They only know about PWDs with anosognosia. They don't know about people like us and they don't want to know.
After reading Iris and Michael's posts, I'm thinking I should send a thank-you card to both my psychologist and my (prescribing) NP. I'd probably be dead without their support. I'm just not strong enough to get through this journey on my own. That's it in a nutshell.
BMR, you recently posted you were going to flip out. Is your psychologist helping you with that? As I posted above, my LCSW did give me a technique for handling stress after it occurred. It did give me a lot of relief! I do credit her with that bit of help.
But I learned from an emeritus member, Alan in Colorado, about dealing with stress and anxiety from a dementia point of view. I frequently mention how much Alan helped me. What he told me on this message board, I never learned anywhere else. What I learned from him changed my outlook!
I went to one early on when I was still working and was struggling
for a diagnoses. She helped me deal with anxiety, stay calm, and to find
alternative ways to do the things I was struggling with. She was truly a life
saver and taught me new ways. She also made me feel like I was not going crazy
and there real was something wrong with me even thought my doctors were clueless
and said I was depressed. She said I was not.
She truly was fantastic for you, Michael. She gave you validation, which was exactly what you needed. She helped you get through uncertainty. My experience was the opposite. I got no validation for my uncertainty and searching for answers.
I wish I could say the same about the others I went to but they
I'm sorry about the delay. It took me over an hour last night to write, review, edit, etc. my approximately 6-8 sentences reply. Unfortunately, when I finally hit "post" the system was down. Arrgghh! I have an appointment with my therapist in an hour. Since I'm a wordy person I'll reply later today when I'll have sufficient time to repeatedly write, review and edit my response.
BMR, I can relate. I used to lose long posts, and I usually could not recall what I had just written a few minutes prior. So what I figured out to do for the longer posts was to write it out on Word or Wordpad, then copy and paste into the message board. That save me a lot of digital grief.
Best wishes with your appointment.
What a relief! Your psychologist is not trying to pacify you, as mine did.
I too had a long-time diagnosis of depression, although I always declared that I did not feel sad. Actually, my diagnosis was atypical depression. I had, and still have, different symptoms. There is OVERLAP, which takes a knowledgeable and experienced professional to determine, working hand-in-hand with the patient.
Because of my background, I could do a lot of my own research and self-education about the various manifestations of depression.
I don't know your history, BMR, so please forgive me if this is overreach. IMO, when there is a consideration of depression, the depression should be treated aggressively with medications and talk therapy for at least three months. This gives time to find the right dosage of medication and time for the meds to work, because psychiatric medications don't work quickly.
IIn my case, my neurologist gave me an anti-depressant with which I had no response. But within a few days of beginning to use the low dose of Exelon patch, I noticed a difference in my speech and my memory. At my 30-day follow-up appointment, I told him I wanted to continue that medication, and I have been on it ever since.
Nevertheless, after further testing over several years, my neurologist determined that I do not have Alzheimer's Disease.
I asked, if I don't have Alzheimer's Disease, what do I have? He gave me some response which basically said he didn't know. Hence my diagnosis remains, cognitive impairment not otherwise specified. This means my difficulties are caused by something other than Alzheimer's Disease or FTD or Lewy Body Dementia, the common dementias.
He and my rheumatologist believe it is due to systemic lupus, although he did not rule out vascular pathological effects from hypertension, because my brain MRI has "spots", which he calls leucoairiosis.
Getting back to YOU. I hope you can get guidance about feeling like you are going to flip out. I had many bad feelings in the early years. But now I don't feel like I am going to flip out. I think it will help you to take it easy on yourself, not to put too much pressure on yourself. I hope your professionals are supportive in this area. Good night. Feel better soon, BMR!
Thank you, Iris.
I tried to take your advice and type my reply using my word processing program, but it seems I've lost my way for the moment. IOW, the blank document is not where it belongs on my screen and the font size is still a bit off. I can't figure out how to fix it at the moment. Oh, well.
I first came to this board sometime between 2011 and 2017. It's been a long journey. I'm afraid my recent incident of flipping out was a combination of factors. I've been treated for depression for a long time and overall, I was pretty much o.k. except for the last few weeks. My flipping out was a result of anxiety of unknown origin. ha ha. I was surprised that this anxiety suddenly appeared and I swear I felt it throughout my entire body. NP started me on buspar ? last evening. I believe it may be due to worsening of my cognitive impairment. It's too soon for me to know, for sure. It's as if I'm back in 2017 when I received the results of my latest neuropsych and then the positive amyloid test. "Is it really AD causing this? What I am going to do?! I'm just not ready for this. I'll have to kill myself before I become so demented I won't be able to do so". IOW, crazy talk. I'd better post this now in case the system goes down again. I'll post a little more tomorrow.
I flip out over ever single small issue any more and it is hard to control.
Hope you are not going down my path as it is driving me nuts.
My flipping out was a result of anxiety of unknown origin. ha ha. I was surprised that this anxiety suddenly appeared and I swear I felt it throughout my entire body.
I'm so lucky to have found this post and responses today
One of my problems since dementia symptoms began is being verbal and so treated as faker, and second, not being trusted to use medicines for anxiety when it is out of control.
I have a NP (who I would like to replace) who refuses to give me a prescription for Ativan. She behaves as if I am trying to get drugs for ??? and refuses to refill prescriptions.
For past year I have had abdominal pain, turns out there is growth on one ovary and it pulls, hurts. Took months to get to a GYN doctor who during the visit pretended she could not pronounce words to judge my reactions. Could I guess and name the med she was mispronouncing. Humiliating and I left with zero advice on what could happen if I begin yoga again and daily walks - could it rip open? She told me it was too risky to remove it. My questions were evaded.
2 years ago after being trapped in a wild fires for days I went to an ER for vomiting and raw esophagus from breathing smoke and they refused. treated me like scum, ordered a televised conference with a psychiatrist - with intention of having me locked up on psyche ward for BORDELINE PERSONALITY DISORDER. (What do they think Alzheimer's looks like? Sounds like? being verbal has been such a problem I quit speaking as I used to.)
I only found this out about this later when I requested records and it took me a year to clear up their medical records saying i "pretend to have Alzheimer's as an attention seeking behavior".
My doctors in Michigan all said "I can do nothing to stop this but I can help make you comfortable." I had prescription for ativan so I would not be overwhelmed when anxiety hit. Because I am not allowed Ativan with current doctor, I have had shingles 3 times in 6 months and now have chronic pain after. The NP still hasn't ok'd antiviral meds after last round. My plan is to call another health provider and ask for a doctor who likes working with Alzheimer's patients as they have so far been really good when I have had tests done through their network.
Before I was diagnosed with Alzheimer's I was told I was bi-polar by psychiatrist (good days and bad days) and given drug that left me with Tardive Dyskinesia. I went to talk therapy and she always said "You don't seem to have dementia." I quit driving because I can't see, did she think anyone gives up driving to pretend depression?!
I never abused Ativan or pain meds. The ignorance and arrogance is crazy.
For people with PTSD in addition to dementia I have sought help with a counselor who does the rapid eye movement treatment and I do at home work, including the breathing techniques.
The question I was going to ask I will ask on younger onset section.
I'm back. The NP gave me a few items to take care of, probably to reduce my anxiety. I went to my PCP to have him complete an "Order for Life Sustaining Treatment" and to request an order for a CT or an MRI. He did all of these. The OLST was completed, signed by my doc, and is now hanging on my refrigerator door. Basically, it says leave me the F alone.
After discussing what information, if any, an MRI or CT of the brain would provide, he told me why neither would provide me the information I was seeking. He told me that I was intelligent blah blah blah but he also listened when I told him my Amyloid PET had Z scores north of 6.0 and that I had never seen a Z score above 3.0 in my entire life. (I did eventually find two PETS on the Internet that had scores similar to mine.) He handed me an order for a CT of the brain AND an order for an MRI. I am thankful to have this support.
*Iris, the first thing I did when I started with the anxiety was deep breathing. I have never been able to successfully calm myself taking slow, deep breaths, but I sure try. lol
Welcome back, BMR. First, I want to make it clear that I am definitely not against medical treatment or support in a therapeutic manner. I'm against being told "you're imagining this" or "you're just trying to get attention for yourself."
I don't know what a Z score is. I don't know what my Z score is. Hmm.
Deep breathing worked for me for calming within a moments of needing it. I lived through a prolonged period of stress responses and anxiety when I first came to the board, so I did A LOT of deep breathing! I use deep breathing now, on the occasion that I need it. But the occasions now are few.
BMR, I am concerned about you feeling like you are or were going to flip out. It is understandable but it is not something to just let slide, IMO, because it can come back at any time. Circumstances and situations will always pop up, and people like us have the distinction of losing our coping abilities. We have to strengthen what used to work for us, and most likely, we have to learn new coping tactics. This is what is so hard for people like us. Our losses are invisible at first, and we have trouble learning new things. Deep breathing is great but you will have to search around and find what works well for YOU.
You are ahead of me with the OLST form.
Have you had additional cognitive testing to compare to 2017? My neurologist tested me with comprehensive computer testing and concluded that overall my cognitive ability was plateaued. I concur.
Things are opening up here in CA next week. I hope your area is doing better also.
Even though I am newly diagnosed, and am not presenting with ANY issues, my experience so far is that "people in general" do not, nor will not understand what it's like to have dementia. I truly believe that this is one of those things that no one can understand unless you have been diagnosed yourself. I have been visiting with an MSW for many months, even before my diagnosis, as I was diagnosed with PTSD in 2016 and have severe anxiety attacks.
Even though I enjoy talking to my MSW, she does not have any helpful information above and beyond what I know myself already. I have a medical background and also took care of my mother when she was diagnosed. My mother has since passed.
Additionally, I also have called many organizations, both National and Local, and I have not received any information from those encounters. I'm very disappointed.
I have been thinking that maybe the medical community might conceive of identifying people who are newly diagnosed and aren't having any difficulties; such as myself, and let us inform them of what is happening with us particularly regarding the supposed "help" that is NOT out there that we keep getting referred to!
Dear BadMoonRising, I can relate to not wanting to hang around on this Big Blue Marble we call earth if I become totally demented!
I'm newly diagnosed and have NO issues with my memory. I think I was misdiagnosed to be honest...
Keep posting, if for no other reason than to put your thoughts on a message board, I think there is consolation in that..............