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doctor visit goes to heck in record time
alz+
Posted: Thursday, July 1, 2021 12:13 PM
Joined: 9/12/2013
Posts: 3608


When I was moved from Michigan back to California I had to find a doctor to keep my prescriptions going. Ended up at a clinic where the staff and communications function in a different universe. My medical person refused to refill my anxiety meds or shingles meds until I saw her in person which was another 4 weeks away.

So they give me a "new patient form" when I come in. There are 50 questions about what sex I think I am and how I want to be addressed etc and 1 question about what brings me to clinic today. In the room the NP comes in and says "How can I support you today?"

It went downhill from there. What does that mean? You told me I had to come in to get refills on meds I have successfully managed for 10+ years. We both had masks on so I couldn't read her lips or expressions. I lost it, she countered everything I said, finally asked me just what I meant by "comfort care".  That is what neurologist told me when I was diagnosed, "there is no cure but we will do all we can to keep you comfortable".

She claimed I could have just called clinic and talked to her. I tld her without the antivirals I had anxiety build up and got shingles for 3rd time in 1 year which now spread to wider area of my body and to go through this with no pain relief or anxiety meds was cruel and twisted. She then said I should come back in a week !!! and she would clean my EARS because of hearing loss. I was diagnosed with hearing loss 25 years ago. It went on with her countering everything I said I expected for Alzheimer's care which is medication support and management of treatable stuff like UTIs etc.

Finally she looks at my chart and says, "well you are 79 years old now" and I fell for it. I said "what? I'm 72! and who cares how old I am?" She then looks over my chart and says "Oh yes, 72." It was another TEST QUESTION like when GYN doctor pretended she could not pronounce the meds I was on and ER doctor last year after smoke inhalation visit had psychiatrist play a game of name what is in the corner, "chair" and then I was supposed to remember that while he quizzed me about being mentally ill, at end he said "what is the answer to my question?" and I forgot his question, didn't know what he was talking about, so I left with no help and narrowly escaped being put on a psyche ward. 

I ranted all the way back to Habib's and started search for new doctor.

This morning I woke up scared and shaking and recalled I had just had a birthday and I am 73. Ha!

because I can talk, because people don't know what alz looks like, because people want pain and anxiety meds to party with or something...

So I am sitting here hourly checking for fires with no escape plan and in a drought where trailer park residents are using bathwater to water their plants etc shaking because people do not believe me and refuse to help me. Without CBD oil I would be more like they want me to look like.

Today i find out she did NOT call in refills. I ended up in hospital last year because I do not get treatment for my problems. I endured the "you don't seem to have alzheimer's" crap and denied pain meds that were prescribed and then being witness to an incident that was horrific.

Not being believed is the biggest threat to me having a life.  No way I can keep up a conversation so I write down my issues and hand it to doctor. They take this as "scripting". Today I am listening to Habib battle his telephone care for his blood thinner tests, he has been on phone more than an hour after being hung up on and put on hold etc etc etc.

Anyone else getting these stupid tests from their doctors? I mean "Person, man, woman tv" type questions? Is this a new medical thing to push you to breaking point and then send you off?

love and courage



Jo C.
Posted: Thursday, July 1, 2021 2:15 PM
Joined: 12/9/2011
Posts: 11988


So sorry this is happening to you and can only imagine the frustration and hurt. 

It seems that this is too much to handle alone; it would be so helpful to have an advocate who could stand up for you.  Can your daughter or son make a visit and attend appts. with you, advocating for you and getting things straightened out?

 Don't know if that is possible, but having someone to be an advocate would probably bring the best results.

 So wish this were simpler and that I had better answers,

 J.


Iris L.
Posted: Thursday, July 1, 2021 3:19 PM
Joined: 12/15/2011
Posts: 17439


A Belated Happy Birthday, Alz+! 


I hope you were able to aqueeze out some happiness amidst all of this chaos.


People with cognitive impairment or dementia walk a FINE LINE.  There is always a risk of someone wanting to take away privileges or otherwise impact independence.  This is one reason why I do not disclose that I have cognitive impairment.  It's on a need-to-know basis.  The other reason is that there are many people ready to take advantage of an older adult with a perceived impairment.


Alz+, you are not on medications that identify you as a PWD.  The medical staff has already shown you that they are not familiar with working directly with PWDs, the majority of whom have anosognosia.  You spoke about shingles and anxiety; that should be enough.


Your writing is eloquent.  Perhaps your speech in person is not so eloquent.   I know how easy it is to get turned around and not be able to follow a line of conversation after a couple of sentences have been spoken.  I have the same issue.  Thanks to Covid restrictions, I have been able to limit my interaction with problematic people this past year.  But I just made a new appointment this morning and I had to go around and around with the appointment maker.


I really don't know what to tell you now.  Perhaps focus on getting your refills.  How would you feel about your daughter being present on the telephone or via Zoom when you have an appointment?  Would you feel better with an advocate?  I realize she can't  be there in person.


How are you getting your meals?  Could you get Meals on Wheels?  If not, and if you don't mind some processed food, get some frozen entrees from the supermarket that you can heat up.  That's what the Adult Protective Services social worker told me as an alternative to Meals on Wheels, which I didn't want.


Hang in there.  It helps me to recite the Serenity Prayer.  Regarding potential fires, your trailer park should gave an evacuation plan.  There should also be a government senior organization to help with disaster planning.  CA is proactive in this area.


Iris


alz+
Posted: Thursday, July 1, 2021 5:10 PM
Joined: 9/12/2013
Posts: 3608


Iris. I forgot what it is like to have you answer a muddled confusing rant with the most gentle reality check.

Yes on needing someone to speak for me now. I would not admit that yesterday but reading those words, yes! My daughter is looking for another doctor for me.

As to people wanting to take away rights and privileges - you put words to that fear, I did not understand why going to a doctor made me so nervous. That is it, and how they try to test me, looking for some reaction. But I know the anxiety is not always something I can calm down by anything but an Ativan works, smallest dose and an hour later breathing normally or can go to sleep if I take it at night. I don't want to be doped up, I need desperately to escape cascades of chemicals from some fear triggered.

Now I understand why you don't mention certain things that aren't necessary to know to get medical help with something else. I have seen photos of me in past months and I was feeling really Normal, like I could pass anywhere for full functioning - and the person in the photo looks like Alzheimer's. Far away eyes never quite focused on anything. It's helpful to be faced with a mirror, another perspective. I'm thinking this through.

***

This morning I canceled the appointment the clinic NP insisted I make, my dog has been living with Habib and visiting me for a couple hours twice a week. She went to vet for eye injury and was diagnosed with lung cancer and sent home for end of life. I have been staying overnight there to be with her and help Habib a couple nights a week. An hour after I canceled, a counselor attached to this clinic called me on my cell - he was told by the clinic to call me and get me a phone visit consultation asap. I said "No. I would love to talk with you after I finish separating from my dog but I only have enough glue to do that well. It will drain me to even have an appointment waiting for me."

He kept trying and I didn't realize until we ended the call that the clinic is trying to do some emergency intervention on me. I am terrified and I'm just trying to live my life in a trailer park and experience the last days of having a beloved dog in my life. 

She did not refill my medications. 

*****

Appreciate more than I can say having your perspective.  I'm older than I thought, and not as normal appearing as I thought, but I still can live alone with Habib's and neighbors' help. I learned to protect the energy/capability I have each hour and save it, guard it for things important to me, so little is left of "mine" I protect it from others demands and the clinic does not respect that.

I swear, I expect a police car any minute.  I bet they called my daughter.

love and courage

After I got the call from counselor I was starting to break down again, afraid of people plotting (even if they think for my benefit they hide that part) and took a couple puffs of cannabis to stop it - so writing this was as good as being able to drive a car again. I edited it and everything. 

Great to have your help. Will read again, a lot of help to absorb. Thank you




Iris L.
Posted: Friday, July 2, 2021 12:31 AM
Joined: 12/15/2011
Posts: 17439


alz+ wrote:

 But I know the anxiety is not always something I can calm down by anything but an Ativan works, smallest dose and an hour later breathing normally or can go to sleep if I take it at night. I don't want to be doped up, I need desperately to escape cascades of chemicals from some fear triggered.

 

Alz+, I'm going to tell you some truths that may be hard to hear.  In recent years, doctors have been pushed to limit prescribing psychoactive drugs.  Older adults are especially vulnerable to benzodiazepines and other drugs.  They cause cognitive and memory side effects and contribute to falls, which may lead to fractures and long, complicated hospital stays.  I believe you said you have problems walking already.  


You are a relatively new patient.  Doctors, including myself when I was a practicing physician, are wary of new patients who request psychoactive drugs.  Doctors have to document why a particular drug has been prescribed and for how long it will be needed.  All medical records are scrutinized if the patient is on a government medical plan.  


All doctors are wary.  When I was a patent of a psychiatrist, I had to bring in my pill bottles to show that I was not abusing my medications.  That's just the way it is.  I was not offended.


You have already presented yourself as a cognitively impaired older adult.  IMO, the prescriber would gave a hard time justifying a prescription for Ativan on your request without further confirmation of its benefit.


Have you heard of the Beers' List?  This is a list of drugs that are relative contraindications for older adults.  They can be prescribed, but with great caution because of the risk of side effects.  


In addition, there is the effect of tolerance meaning the body gets used to a dosage, and then higher dosages are required to get the same effect.  This can be a prelude to addiction.  Further reason for doctors to be wary.

 

Also, you saw a nurse practitioner.  I don't know if a NP can prescribe a benzodiazepine.

 

 

***

This morning I canceled the appointment the clinic NP insisted I make, my dog has been living with Habib and visiting me for a couple hours twice a week. 

 An hour after I canceled, a counselor attached to this clinic called me on my cell - he was told by the clinic to call me and get me a phone visit consultation asap. I said "No. I would love to talk with you after I finish separating from my dog but I only have enough glue to do that well. It will drain me to even have an appointment waiting for me."

He kept trying and I didn't realize until we ended the call that the clinic is trying to do some emergency intervention on me. I am terrified and I'm just trying to live my life in a trailer park and experience the last days of having a beloved dog in my life. 

 

Alz+, I'm sorry to say, you missed an opportunity here.  The counselor could have been a person for you to explain about the shingles.  Perhaps the counselor could gave arranged for a Zoom visit with your daughter.  Or could have figured something else out.  

 

Do you know what type of counselor this was?  A social worker? A psychologist?  

 

The clinic did identify you as needing more attention.  But you then told them that your dog's medical problem was more important to you than the reason you came to the clinic for.  You sent a mixed message.  

 

Believe me, I understand wanting to be close when a pet is dying.  But the dog is not actively dying now.  You still don't have what you want, and you don't have an appointment, and you may have cut off further follow-up.

 

 

She did not refill my medications. 

 

This is going to be a problem.  

 

 

Appreciate more than I can say having your perspective.  I'm older than I thought, and not as normal appearing as I thought, but I still can live alone with Habib's and neighbors' help. I learned to protect the energy/capability I have each hour and save it, guard it for things important to me, so little is left of "mine" I protect it from others demands and the clinic does not respect that.

 

This is what you needed to explain to the counselor.  Not about Alzheimer's, but that you are an older adult in fair to frail health, trying to live and not be a burden on your children.  Frankly, I think you could do with some services.  There are services available for older adults.  But someone needs to make an assessment.  

 

 

I swear, I expect a police car any minute.  I bet they called my daughter.

 

If the clinic is still concerned about you, they might ask Adult Protective Services to open a case for you.


I caution you to think about what your goals are.  I hear you saying you want to be left alone.  I also hear you saying that you can't manage.  What about your food?  You did not respond about Meals on Wheels.  


People are not plotting.  I am telling you these things because this is how the system works.  

 

 

love and courage

After I got the call from counselor I was starting to break down again, afraid of people plotting (even if they think for my benefit they hide that part) and took a couple puffs of cannabis to stop it - so writing this was as good as being able to drive a car again. I edited it and everything. 

Great to have your help. Will read again, a lot of help to absorb. Thank you



 I hope you get some rest and have a better tomorrow.  Life is hard for people like us and no one can imagine what it is like, having to do everything alone.  We do the best we can but at some point we do need outside help.  The trick is getting the help on our terms.


Addendum:  You said your daughter is looking for another doctor.  This is might be called "doctor-shopping."  Another reason for doctors to be wary.  I point this out so you can be aware.  This is how things are.


 Iris



Michael Ellenbogen
Posted: Friday, July 2, 2021 7:23 AM
Joined: 11/30/2011
Posts: 3902


So So sorry as it just never seems to end. It must be so hard to be on your own and you must find someone who is willing to help you. You surely need some one to advocate for you. As you always know I am her to help but it would involve speaking on the phone to someone. Happy Happy Birthday and so many more.


alz+
Posted: Tuesday, July 6, 2021 6:14 PM
Joined: 9/12/2013
Posts: 3608


Iris - I just read your last thoughtful and honest response and I will reread it again tonight.

My doctors in Michigan worked with me over 5 years to get meds that kept my life comfortable. I never asked for something that wasn't already helping me a lot.

My use of Ativan is for when bombs are dropped on my house and I start having anxiety cascading through my body. When I use half a 1 mg ativan it stops the build up. I do not use them to relax or whatever. I have described the cascade to her several times before this episode when she withheld a refill (10 pills every 3 months). When I was without this help my body breaks out in shingles. Let me tell you antiviral meds and shingles are not helping me thrive. I had 3 rounds of shingles since January because I could not stop cascade anxiety. So that is what I use Ativan for and it has worked well for me.

Today I was lying in my car port hammock when 2 women dressed in black showed up.

Uninvited people with clipboards - cascade begins. They were, as you said would happen, "We are doing a Welfare Check for an undisclosed person who was concerned for your safety." 

I went into shock and knew I had to maintain or it would get worse. Invited them inside, we sat down, the conversation went to prescription argument we had last this visit. Looking back (they left 10 minutes ago) I said too much about having been abused already by emergency room after wildfire and hospitalization (I witnessed and experienced direct abuse against Alzheimer patients) and a 3rd round at a mental health clinic/hospital forced interview. I needed counseling for months after and have not shared this on board.

It seems radical to expect to be treated like a person. I remember leaving board when some people I trusted began to question my integrity and self understanding during wildfires which encircled where I was living. What you are telling me is not like that, you are explaining the doctor's responsibility and knowledge. I admit I broke down in that visit when I knew I was going to go home and shake from the visit and have no help and get another round of shingles.

My condition is declined to point when it would be best for my daughter to be with me at future medical appointments. Being under the clock, in masks, confused since I did not ask for that appointment, she scheduled it because I had asked to have the ativan refilled.  

My kidneys are full of cysts and the anti viral meds makes it harder to function. She did not refill the shingles meds on top of the rest and wanted me to go to a psychiatrist. I lost it at that point. I folded over my knees and became silent.

The counselor who called me is the one who helped me after the hospital abuse. We were laughing on phone, he helped me become good at defining my limits and needs and we had a broken cell phone connection but I agreed I would see him  - when we are done with the our dog's end days. Everyone has said "there is nothing for you to do for the dog" but they don't understand how her illness has brought Habib and I close to each other as we had not been 50 years ago when we were married. Our cooperation has ended all kinds of bad things and is bringing our family back to balance after years of some very sad separations - triggered by lies about me not having Alzheimer's. I sleep over there a few nights a week and needing to be kind, gentle, respectful to each other around the dog is an experience for us we will never have again.  It may seem trivial to others but this is one of the most healing times in my life. It is all I have energy/cognitive ability left for now.  It is wonderful. The counselor can wait.  There is no emergency.

****

Today my daughter found me a doctor closer to me who said he "would love to work with me" and has had patients with dementia before. 

Going to reread your advice in a couple hours. I appreciate all the time and thought you put into it and I DO know what you wrote is important for me absorb.  Anyone who reads your response is going to learn a lot about how to behave and understand doctor visits. This is important stuff I think. I deeply appreciate you.

I am in shock from the social worker intervention right now. Also getting anxious realizing she can take what I said and trigger more interference.   

 The way I conveyed things is probably going to cause me future problems. The responsibility of a doctor visit is beyond me to carry on alone. 

love and courage


alz+
Posted: Tuesday, July 6, 2021 7:58 PM
Joined: 9/12/2013
Posts: 3608


my history with my Michigan doctors was one of cooperative thinking. We figured out the anxiety avalanches triggered Shingles. 

So when I go to new doctor - am I to mention I have had successful treatment before I got here or be silent?

Is 1/2 mg Ativan more dangerous than 8+ days on Famciclovir in pain, anxiety, alone?

If they want me to do things I know will cause a decline, do I go along with it to not be thrown out as patient?

My first neurologist who diagnosed me said at that visit, "We have nothing to help you with Alzheimer's, but we can keep you comfortable." He prescribed 2 ativan a day and I quickly found out I didn't need or want daily sedation. Over the years we got it down to when I start feeling the Shingles, take 1/2 or 1 pill and do something soothing. It worked really well and i could catch outbreak early and stop it. Now I have to endure - also no pain killers. If you have not had Shingles, I am a saint for enduring.

Do I keep most info to myself? 

My heart is racing, this is really scary. I never had adversarial relationships with my doctors at home.  They have never told me about this growth that is too risky to remove.  I did not know they had something else for this terror that is flooding my body. If I had known that ??? Well, I didn't. Take a deep breath. Most days that and walking or yoga can bring me down. If not, cannabis works. When that doesn't work I'm supposed to go through months like that? I did when I first got here. They thought it better medically for me to shake with no sleep for weeks than take an Ativan.

Well, now I see how they will look at me for wanting to continue what always worked before. I know it is not bearable. My daughter lives 5 hours away. I give up.



alz+
Posted: Tuesday, July 6, 2021 8:09 PM
Joined: 9/12/2013
Posts: 3608


Michael Ellenbogen wrote:

So So sorry as it just never seems to end. It must be so hard to be on your own and you must find someone who is willing to help you. You surely need some one to advocate for you. As you always know I am her to help but it would involve speaking on the phone to someone. Happy Happy Birthday and so many more.

Thank you Michael. Just to be believed once in awhile is really helpful. I never got a lawyer to respond after the hospital events so I doubt anything has improved.
I do need someone to advocate for me, if my daughter was closer she would be perfect, she is helping me by phone now.
Habib has really stepped up and actually opened his arms to me. Being with our dog has shown us HOW to help another being live out their days, made us much better people.
I get groceries delivered and cook for both of us, he does the driving and helps me with everything else I need/want help with. We are stressed daily by wildfire potential and out of towners come up and park their cars over dried up grass, throw cigarettes on roads - and the drought. If we don't have rain in extra buckets this winter there is not water. No water no agriculture. the river dried up. We are living in really dangerous conditions.
considering all this, we are doing great.
love and courage

Iris L.
Posted: Tuesday, July 6, 2021 10:44 PM
Joined: 12/15/2011
Posts: 17439


Bravo, alz+!  As I said before, your writing is so eloquent.  I understand completely your reasoning for wanting Ativan to help avoid shingles.  Your prior doctor said it perfectly, he couldn't cure you, but his goal was to help you stay comfortable.  The new doctors should have the same approach.


It's great that you and Habib are re-bonding, especially during this difficult time with your fur child.  You are getting meals and cooking.  That too is uplifting.  Having accomplishments and getting things done contribute to peace and stability.


Now that the social workers have seen you in your home environment, perhaps communication will be easier.  They have seen that you are what you claim to be, an older adult, struggling to remain independent and not become a burden to others.


The fires are a big threat.  Your trailer park people should have a fire evacuation plan.  


You actually seem to be doing quite well, considering.  You always say that managing your environment is key.  You are creating a sanctuary environment for you and Habib and Pup.  Feel great about that!  Let others do their part.  You can't do everything.


Iris

 

 


alz+
Posted: Wednesday, July 7, 2021 10:36 AM
Joined: 9/12/2013
Posts: 3608


Iris -and everyone,

when I was diagnosed in 2013 I was already broken from being told the symptoms I had was a mental illness. When I told my husband he walked out. I had zero support, I was desperate. I came to this message board and you responded to me in a way that I will never forget. You taught me stuff I would never have known, like - stress lowers cognition by 50% - the single most important information to making this journey easier. You made me think of how I helped my Dad with his dementia and death, how my family just emotionally abandoned him, how we would talk for awhile with no words at all. 

Your help over many years has helped a lot of people frame their image of what this journey will be like for them. One at a time we make our lives - set things up in ways that let life be easy. That won't drive away our connections, isolate us more, just figure out in what environment would my cognitive impairments be easily negotiable?

Environment is key to low stress/little responsibility effect of preserving what cognition is left, and maybe enjoying some of the changes. Rock hunting - when I lived in the North and discovered a rock I thought unusual and beautiful and brought it home rock hunting quickly became 4 summers of enchantment on the dirt roads and pits. Being in nature stabilizes cognition. Bird feeding in winter started every day with hundreds of birds flocking to my giant feeder I made outside my bedroom window.  

Cloud appreciation. YouTube videos changed insomnia into classes at Stanford and cherished "alone time". I read books with different perspectives on dementia. No one else in my family wanted anything to do with me, I learned to take that sting as lucky for me they stay out of my little world.

I know I made the NP uncomfortable. I made the social worker uncomfortable too. My refusing to be treated as less than human is my life effort to take a stand in some way so others can benefit, learn how to communicate with medical world. I used to write down what I was there to discuss and get help for. Then I forgot to do it.

This morning my daughter texted that she is coming up to go to new appointment with me end of this month.  I am so relieved. Last night I read about how doctors can target a person as a pill seeker - it was a legal discussion about people in need of at-home pain control who were denied help and then labeled so no other doctor would help them. 

So at least if the clinic goes to the state and labels me I am mentally prepared and won't be surprised. My daughter has become incredibly skilled at managing my anxiety. She learned "don't ask questions" in 10 minutes! and then handed me the booklet she printed out and said "How to not ask questions, you learn it too." I'm still laughing but amazing results.

 I have my own place, a safe neighborhood of comrades over 55, I corrected my ways enough to bring my son and daughter back into a family, reunited with their father with our dog. Habib and I are now concentrated on helping each other have what we need to make this part of our lives calm, helpful, and not be burdens.

This all began because Iris showed me I could LEARN how to live with this. I will never meet the people here who have helped me so much but I love every one of them. I woke up terrified and thought today would be turned off, then I got news daughter coming for next medical visit plus praise here in support of taking care of my needs but the importance of being smarter about it. I am handing off the "smarter" part to my daughter. She knows to tell me when it is too much, she said she likes it for now.

I was given a Purple Kush bud months ago for a moment like this morning, to end a panic state, and found myself able to write and edit. I cherish those years I came here every morning and get insights from people. Spending next 2 nights with dog and working in the dirt. The panic has died out.

love and courage


Jo C.
Posted: Wednesday, July 7, 2021 6:21 PM
Joined: 12/9/2011
Posts: 11988


Have I told you that you touch my heart deeply?   You certainly do and always have.

 You are truly very intelligent; are an amazingly wonderful writer, and a person of great courage under difficult challenges and circumstances.

 You have taught me a lot, and I also think that you are a book waiting to happen.  What a huge batch of great changes you have had, I so remember you in the UP of Michigan as I am a native of the UP.  Glad you do not have those winters to sruggle through. 

Delighted to hear your daughter is coming and will be with you at your appt., you needed an advocate and she is arriving at the right time. The connection with Mr. Habib is a big plus at several levels.  Connections are important.  Say hello to your dear daughter and Mr. Habib from all of us.

  You are awesome, and an inspiration.

J.


alz+
Posted: Thursday, July 8, 2021 1:14 PM
Joined: 9/12/2013
Posts: 3608


Jo C and everyone -

I wrote my first book at 5 years old and have been writing ever since. It takes time to make it sound close to what is in my mind.  I feel like after caring for my dad and the horror show I had with my mate in the UP and now the problems I have out here - there must be something learned worth sharing. Thank you for kind words.

Forgot what I came here to say. Oh well.

OK - yesterday I came to Habib's, I was calm enough to make us dinner. Then something started trembling in my body. I went to bed and dozed a few hours then woke up to splitting head pain. I could not identify the pain as migraine until I was vomiting hours later. This is aftermath of having social workers show up at my place, uninvited. Then the rage chemicals began, thoughts of all the abuse went on for hours. Habib brought me hot packs and the dog was at bed side. This may trigger Shingles again.

The social worker said "We are here to help you. If you need help with something you ask us. We were sent by someone who is concerned about you."  I believe she said that about 10 times in 20 minutes of conversation.

My experiences in nursing homes and hospitals is that having dementia is dangerous because of the ignorance of others and it takes too long for a lot of us to figure things out, esp as cognition keeps changing. (when my dad was dying the nurse had put the call button in his hand in case he needed help. Not kidding. I spent every night with him after that)

"Someone, who will remain anonymous, called us to check on your living situation." 

without dementia I might have said, "No?! You're kidding. Well, I'm fine. Tell anonymous they can ask me in the future. Thank you for reaching out, have a great day."

with dementia I'm thinking "they can twist any thing I say wrongly, I have to be careful, I left craft stuff and laundry on table, I have 5 pair of shoes at door -  I am being sized up, danger, danger, danger".

 My Dad went through this phase. I thought it was because of his WW2 experiences.  When the social workers left I think I said, "Who is coming next? the Cops?"  

Hoping my daughter can set a better course for me soon at visit with next doctor. I will be described as "doctor shopping".  I called the counselor and left message for him, he is out of town for next 2 weeks.  

This has changed the balance. Who knows what comes next.  

****

love and courage


Iris L.
Posted: Friday, July 9, 2021 5:53 PM
Joined: 12/15/2011
Posts: 17439


alz+ wrote:

 Then the rage chemicals began, thoughts of all the abuse went on for hours. 


I always talk about about how useless therapists and psychologists have been for me, despite thousands of cash dollars and many hours.  But I did have a few good experiences, one being learning about deep breathing as a relief for stress.  It works. The other experience was of doing an "anger release."  This released ALL of the pent-up anger that I had from my early years.  I have to say that my life was different after that one anger release. I didn't have rageful thoughts.   If therapists do something like that, they might actually help some people.


For a while I worked with a social worker who I thought I had good rapport with.  Then, one day three days before Christmas, she gave me a long article to read that said that believing in God was like being psychotic and being mentally ill.  I am a born-again Christian and she lost me right there!  I went to the post office and mailed back her stuff and told her not to come back!


Alz+, from you I learned that having dementia does not have to be the hell-hole people make it out to be.  I get it, it's not good.  It's rough--very rough.  I know that from my own experience.  But it doesn't have to be hellish.  I learned from you, and I learned from Mimi S, and I learned from Steve in San Jose, and I learned from Hogeway in the Netherlands.  PWDs can do well when they are in their own bubble.  The trick, which should not be a trick, is getting into a bubble and staying in a bubble.  Interacting with the outside world has to be on a different level. 


I am re-realizing this now.  After I completed my taxes in early May, I thought my life would be smooth sailing.  I had lost weight and was vaccinated and things were good.  But things around me began falling apart.  I shouldn't say began to fall apart, because the world is always falling apart.  It's just that I began to notice things falling apart more.  I had let the outside world enter my bubble.  And like story about the camel, once you let the nose into the tent, the body will follow.  I came to a re-realization this week that I need to be more diligent about protecting and preserving my bubble.  This means less involvement with the outside world.  Or at least, involvement on MY terms.


I am well aware that outsiders have absolutely no concept of what I am dealing with, what I have to face each day, or what my challenges are.  Since they don't know, what they say to me will most likely be inappropriate.  I know before they open their mouths that I won't like it.  But I am learning to take what they say with a grain of salt and consider the source.  My goal is not to become mentally trapped by their bad vibes.  Ugh!  I'm getting sick just thinking about their bad vibes.  Ugh again!


Back to better thoughts.  You have people who say they want to help you.  Let them try.  Set your boundaries.  Set your goals.  Let them learn about you, that you can't handle stress.  If you want your daughter to communicate with them, give her permission legally via the HIPPA forms.  Did the social workers talk to you about that? 


It sounds like you have a nice routine going.  Help seems to be coming into your life.  Things are smoothing out, yes?  I hope you keep looking into the deep breathing remedy.  It works for me.  Keep up everything you have found that helps you!


P.S.  I heard there was an earthquake in Northern CA.  Ask everywhere about earthquake planning.  California is very pro-active in this area, especially for older adults and pet guardians.  


Iris