Therapy for PWDs? Not for me

Iris L.

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!  

Iris

Michael Ellenbogen

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.

Iris L.

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.  

Iris

BadMoonRising

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.  

Iris L.

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!

Iris

Michael Ellenbogen

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.

Iris L.

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.  

Iris

Michael Ellenbogen

I wish I could say the same about the others I went to but they were terrible.

BadMoonRising

Iris,

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.

Iris L.

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.

Iris

BadMoonRising

I'll try to make this brief. ; )  My NP moved up my appointment last month because she picked up that things were a little sketchy during our last meeting. The appointment is tomorrow so I'm sure I'll have something to add later. lol When I scheduled my very first appointment with my current therapist, I made it clear that I was losing my mind, either because of a cognitive impairment or depression. Mind you, I didn't feel sad, but I knew that depression can cause similar symptoms. Here's the major difference in our experience - my therapist referred me for neurocognitive testing immediately even though he did not believe I had a cognitive impairment. Also, I did not learn of his doubts until well after my MCI was diagnosed. I had the same experience with my AD diagnosis. Neither he nor the NP thought I had AD but the two of them agreed I needed further testing and the NP reached out to others in the field to find someone she trusted and could recommend with confidence. In other words, my therapist and NP dealt with my depression and anxiety and left the other stuff to the specialists. More later...

Iris L.

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!  

Iris

BadMoonRising

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.

Michael Ellenbogen

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.

Iris L.

BadMoonRising wrote:

  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. 

One of the best pieces of advice that I have ever received came from one of our emeritus PWD members, Alan in Colorado, who was himself a psychologist. He warned us that stress and anxiety reduce our cognition by HALF!  This was enough to motivate me to get serious about dealing with stress and anxiety in my life.

When I first joined this board, I was a nervous wreck!  I couldn't handle my life and I didn't know what to do.  As I stated above, the professionals were of no help.  I also had two lay women advise me who were supposed to be "senior advisors".  They didn't know how to help me either.  

Alan's advice helped me because he made me understand a major reason why I was unable to handle my life.  That was because my mind was so affected by stress and anxiety that it couldn't function.  I felt that my life had come to a standstill.

Of course, stress and anxiety were not the only causes of why I couldn't function, but they were major contributors.  Once I realized that, I had a different perspective.  I could approach my life in a different way.  I realized that I had to get a handle on the stress in my life.  This was not an option, but a requirement, in order for me to be able to function at all.  

As I mentioned above, the LCSW had taught me a technique to manage anxiety.  It sounded simple, but it worked!  This simple technique was deep breathing!  Whenever I felt stressed, I went into deep breathing.  I did not use meditations or mantras at that time, just the deep breathing.  I did that many, many times in a day.  And it worked .  Deep breathing worked in the past, and it works now, on the occasion that something comes up that bothers me.

I also realized that I could not ALLOW things or people to upset me.  This took some effort.  But my main thought was that I have a RIGHT to my peace of mind.  I don't have to allow other people's drama to affect me or upset me.  

This has led to putting up boundaries around me.  I put up boundaries to protect me from other people's negativity.  I put up boundaries from the world's input, such as television shows and the news and other types of negativity.  I have learned that I have a sensitive system and I cannot handle what is common in the world.  It affects my demeanor and my cognition, and I need my demeanor and my cognition to be as stable and as functional as possible.  If I don't take care of myself, there's no one else who will.  

Deep breathing is not the only stress relief technique, but it is what works the best for me.  Everyone has to find his or her own best technique.

Iris
 

BadMoonRising

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

Iris L.

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.  

Iris

 

 

laughing

My Psychiatrist told me that the ability to control emotions is diminished and the skillset I once had to not get upset or anxious is diminished. It isn't my fault that I am upset as I cannot control it the way I used to. I also started out with LMSW, then Psychologist, then a Neuropsychologist and now am with a Psychiatrist who specialized in Neurological problems and it makes a world of difference when I can speak to someone who knows the illness.

Kay89898

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! 

Kay89898

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..............

Kay89898

I flip out too at the drop of a hat!  It can be due to too much noise, too loud of a noise, or maybe my wifi is down..........

Kay89898

I too have PTSD in addition to Dementia. My PTSD was diagnosed in 2014.  I was prescribed Alprazolam (for anxiety) and Zolpidiem for sleep.  Fast forward, Jan. 2020, I fell on the ice, hit my head, had a traumatic brain injury and 4 compression fractures in my back.  I was in a LOT of pain and very messed up cognition wise from the TBI.  I was prescribed Percoset for my compression fractures. I was still taking the Alprazolam and Zolpidiem which is a big NO NO  to take Opioids with Anti Anxiety.  I started having seizures, 7 times in 2020.  My GP told me my seizures were because I was abusing Alprazolam (benzodiazapene) he also told me that my dementia was due to taking Alprazolam since 2014!  Because I was in the hospital so much, I wasn't getting my Alprazolam.  I had to go through withdrawals 7 times........  If you haven't ever experienced withdrawals from prescription meds, I can say it is the worst kind of torment any human being can endure.  So now, no physicians will prescribe me anti anxiety med for my PTSD because my medical record says I'm a benzo abuser...........