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alz+
Posted: Saturday, January 25, 2020 3:16 PM
Joined: 9/12/2013
Posts: 3608


Hi friends!

It has been a while and thought I would leave an update.

Still have a bedroom in house I was moved to last May, it has been clearly temporary since the day I got here.  Habib can not take care of himself and despises having me in his house. We tried to make it work but failed. Often.  My son and daughter agreed it is best for me to be somewhere else and they are busy and far away so everything takes time.

 In a couple weeks I may be moved into a small place of my own (I have to arrange the moving, set up a household, pay for help). This is best compromise we could come to where I avoid being put in assisted living and the intense suffering my children felt would end. The place does not have a yard, so again separated from my dog who hears for me. Living alone after not being able to live alone 3 years ago. Odds? 0?

What is getting me through the hours is all self directed. I stay in bed most of day alone. I hired a woman to drive me to appointments and grocery shop, her car is iffy, she  canceled yesterday, so I had to cancel appointments. The two before her were unreliable, one chattered and revealed what her other patients were doing, also both no shows. this drains the life out of me. People have had problems with agency people too, stealing, drugs stolen, worse things.

I listen to audiobooks on youTube, walk most every day, do yoga once in awhile. My doctor/NP and I have come to understanding. We found out Ativan does not end anger and tension bouts, even 1/4 dose made them worse. I was in state of terror for months, shaking, trembling, panic. It was always interpreted as anger, I quit trying to explain. I aged 10 years. My local dispensary helped, gave me a 1:1 thc:cbd oil which calms me and gets me from bed, dressed, and out for walk or cook something, make a phone call. When I forget the oil I am in bed all day and nervous. 

The intense and prolonged heartache of leaving my home was a surprise. I had imagined something never promised and what was promised fell apart fast.

The quality of alone by choice and alone by being unwanted - to feel abandoned deeply painful. Accepting the situation helps most, I am here today, I will live someplace else one day soon maybe, I have no friends, my dog will be here with Habib, my future is to be made up out of that. I am calling my future QUIET. 

Since my family is dispersed I am on my own. I learned this isn't that they don't love me, or love me properly. They just can not afford to leave their worlds and move up here and neither one is interested in a care-giving role. Never try to make someone like helping me again! What a waste and all the trouble caused. If they don't get it, then they will make the dementia unbearable for everyone. 

 I make no plans, get through the day, get through the night. Never got a vacation, never got to desert. Everything in my life is done in short term survival mode.

The stigma is everywhere. I learned if I question people's beliefs about Alzheimer's they reject the ideas and hate me for thinking it might not be what they say it is. Alzheimer's is the latest stigmatized disease since AIDS.  There is a trend on youTube of people recording their "loved one" and demonstrating for their "audience" how Mom (usually) can't say their name or something. We are human things to display. Some air their grievances towards the person as a failed parent, it is like a side show, acceptable with this disease only. No one goes into a cancer ward and holds up their mother's limp wrist and lets it fall to demonstrate how out of it the person is. As far as I know our environment is the only thing we have to make the disease process more peaceful. I wish I knew I was going to have to pay for help, I would never have moved out here, not even with blizzards back home. Put your time and money early into making the best environment, it only gets harder. If you live alone now, be part of finding out how to make it easier, possible. Ask what people are doing - there are a lot of people doing it, few can afford assisted living, few of us have anyone to step up. Alone is hard, for me it better than being where unwanted.

Mexico has a whole bunch of new assisted living places to accommodate Americans fleeing the high cost here and looking for something less starched. Get a passport and a Real I.D. ! I have neither, could not do it, several failed attempts.

Put out bird seed, water a plant, lay by my dog. Hoping all of you invent your own way to go through this without a bunch of trauma. Do it early. If you don't don't, or you make wrong choices, or things fall apart, forgive yourself quickly. No more burdens.

Help each other. Be kind to each other here.

love and courage




 


ladyzetta
Posted: Saturday, January 25, 2020 4:40 PM
Joined: 2/16/2017
Posts: 1582


Dear Alz,

I am so glad to see that your checking in I have missed you a lot.

Sorry to see what is happing to you, I wish there was a way you could keep the dog, as you know dog is your best friend. 

The facility my DH was in had a AL section and it allowed dogs, it had a fenced in yard for the dogs and the people there were very nice and helped each other. I know for me when the time comes I need help I have told my family that is where I want to be with my little dog.

I m sure you have a lot on your mind but is it possible to find a place of your own that will allow you to have your dog?

I have been thinking about you nd praying that you are doing good, and good things are happening for you.

Take Care of Yourself, Hugs Zetta 


Michael Ellenbogen
Posted: Saturday, January 25, 2020 5:43 PM
Joined: 11/30/2011
Posts: 4115


So great to see you here and thanks for the update. I wish you the best.


Iris L.
Posted: Sunday, January 26, 2020 1:37 PM
Joined: 12/15/2011
Posts: 17709


Dear Alz+, it is so good to hear from you!  I'm so sorry you won't have your dog with you.  Will Habib be able to care for the dog himself?   


When you get to your new place, see about getting Meals on Wheels. They will be able to keep an eye out for you.

 

I wish you the best.

 

(((((((( Alz+ ))))))))


Lane Simonian
Posted: Sunday, January 26, 2020 6:38 PM
Joined: 12/12/2011
Posts: 5034


It was a delight to see your name again, although that was somewhat tempered by reading about your current and near future situtations.  I think with the right help you can make it work.  
Jo C.
Posted: Monday, January 27, 2020 11:56 PM
Joined: 12/9/2011
Posts: 12279


Well, hello there Alz+!   It is really good to hear from you though I am sorry for what is happening; so wish it were better circumstances.

You have been thought of often; in fact, I was about to write a Post asking if anyone had heard from you lately.

So hope you do continue to come and share; we are here, we are listening and we care.

J.


alz+
Posted: Monday, February 17, 2020 11:11 AM
Joined: 9/12/2013
Posts: 3608


update:

My son and daughter moved me into a mobile home at a trailer park. It is for residents over 55, pets welcome if well behaved.

My daughter stayed with me for 3 days once we had beds here, my son came and finished some things in the place.

My dog is with Habib and now has dog friends and she goes with him 3 days a week to dog sit 2 others she has become friends with. It is a challenge to be here on my own and I am just letting things fall into place. When I have a fenced area for my dog she might stay with me more often. I hope so. I communicate with all the animals here better than people. Language is - hard to speak, form words.

There is 10 mph speed limit and not really any traffic. We fixed a bedroom for my daughter to use when she visits. I think I can do this through the summer, the grocery has delivery service. Turns out this park has been used since it opened for people to place parents into more simple living. Several people who live on my street have ask if I am the "new person" - a few times a day. No one seems to have good hearing, my condition is totally normal and acceptable.  The property manager and her husband are excellent at problem solving and the place is very humble and clean. Much more suited to me than assisted living. 

There is a pool and club house and laundry. There are large fenced in volunteer gardens.

I had hired a caregiver from an ad to drive me to grocery and errands etc. when living at other house. She started to demand hours and that I pay her car gas bills - small things. I was told by manager here that a few people in this park had hired help and some were bilked and robbed and warned to leave anything questionable to my daughter to decide or respond to. The woman said last week she found a job now and I am relieved she has not been texting me. Not driving is the biggest challenge to living alone. 

I can no longer write descriptions of the things that have changed.  Every moment alone I have to assess every move, everything I do is step by step. My very short memory is gone. Without CBD oil I would not get out of bed or function.

I am safe for now, content, accepting my future.  My family had a healing, we saw the goal as No One Stressed out, wanted us to reunite as adults, we did. A miracle.

Help each other.  Basic set up is environment that suits your needs if possible, once staying "home" is better than going out I found peace with situation.  I brought over some gift paints I was mailed last years and have a brush, it may be months before I paint anything but the HOPE is calming.

Ativan for the fear was fuel on fire. Medicine may not work at prescribed dose, might work at much lower. Better to fix the cause of the anxiety than medicate it.

People believe what they want about Alzheimer's, nothing convinces them otherwise. The disease is not particularly painful, it is just slowing down. If person feeling safe, little responsibility, routine easy - there is just a gradual letting go. 

love and courage


Michael Ellenbogen
Posted: Monday, February 17, 2020 12:57 PM
Joined: 11/30/2011
Posts: 4115


I am glad things are settling down for you and you now have a safe place to be. I should have a answer for you shortly on the other thing I am working on.  It sure takes them a long time. 
Iris L.
Posted: Monday, February 17, 2020 1:02 PM
Joined: 12/15/2011
Posts: 17709


It's so good to "see" you again, Alz+!  I'm so glad you are now in a less stressful environment!  Over 55 senior trailer parks are common down here in Southern California.  The set-up of yours sounds nice, with the clubhouse and the garden.  I hope you are meeting companionable neighbors, and that your dog will be with you soon.


If you can work it out, your daughter can order your groceries online, and you can pick them up or have them delivered.  


As usual, Alz+, you have given me peace.  I like what you say about slowing down.  I am slowing down.  I am in the process of managing my environment as you instructed.  Slowly but surely.


There is a service called Gogograndparent that is like Uber and Lyft but for people without smartphones.  Someone in my Memory Club uses it and he likes it.  It is a bit expensive.  You can sign up for Access, which is government-provided senior transportation service.  Cost is very low per ride, and there is no cost to sign up.


Stay strong, Alz+!  It's always nice to hear from you.


Iris


jfkoc
Posted: Tuesday, February 18, 2020 11:59 AM
Joined: 12/4/2011
Posts: 20398



Ativan is not only a "go to" drug for AD it is also known to have a paridoxical (sp) effect. This drug increased the behaviors/feelings my husband had. Seroquel worked well for him. It is very individual.

After you get set into a routine you may well not need much medication.


Unforgiven
Posted: Tuesday, February 18, 2020 12:49 PM
Joined: 1/28/2013
Posts: 2660


Is Seroquel a benzodiazepine or does it work by some other mechanism?  One hesrs about those paradoxical reactions to certain meds.  I personally have no problem with ativan or lorazepam, but a simple, harmless benadryl for sleep makes me crawl out of my skin.  We are not all alike in our personal body chemistry.  Whoud'a thunkit?

I'm glad to see you back, Alz, and the all seniors trailer park seems the best option available.  I hope you can find a friendly neighbor who can help you with a few things if necessary.  And in turn, you can help them with what you are best at -- providing inspiration and courage.


jfkoc
Posted: Tuesday, February 18, 2020 4:35 PM
Joined: 12/4/2011
Posts: 20398


Seroquel, to the best of my knowledge, is not a benzo.
Iris L.
Posted: Tuesday, February 18, 2020 9:27 PM
Joined: 12/15/2011
Posts: 17709


Yes, it's true that benzodiazepines can cause a paradoxical effect in older adults, causing agitation instead of sedation.  Unfortunately, many prescribers are not aware of this, when they prescribe a benzo for sleep but the patient becomes more wired.


Alz+, I forgot to mention something very important.  You can apply for Meals on Wheels!  This will limit your need to grocery-shop.


Iris


Unforgiven
Posted: Wednesday, February 19, 2020 11:43 AM
Joined: 1/28/2013
Posts: 2660


I was mainly wondering if there were non-benzo calmatives available.  I have always tolerated ativan and lorazepam very well BUT I was warned about the possible physical dependency and never took them in high doses.  I'm thinking of the recent case of Dr. Jordan Peterson, who took Klonopin for two years without issue but then had a horrific paradoxical reaction after a dosage increase last spring and found himself unable to cease the medication sucessfully.  That's enough to make anyone cautious.  Again, different people, different reactions.
Iris L.
Posted: Wednesday, February 19, 2020 5:33 PM
Joined: 12/15/2011
Posts: 17709


Unforgiven, that depends upon what effect you are seeking.  Are you seeking a sleeping pill?  There are non-benzodiazepine sleeping pills, such as Lunesta.  Antihistamines can be sedating, although they may have paradoxical effects too.  There are herbal substances and non-substance methods of calming.  Some use CBD compounds.


Iris


Unforgiven
Posted: Thursday, February 20, 2020 1:20 PM
Joined: 1/28/2013
Posts: 2660


Not for sleep so much as for generalized anxiety while I'm awake.    I use cbd oil, but it just doesn't do the trick most of the time.  Now, actual cannabis in an edible form might do the trick, but I live in the conservative, uptight state of Wisconsin where we don't stand fer none of that whacky-tabacky on general principles.

I also wanted to further the discussion on how different people have different experiences with  medications.  I know some sleep aids work for me, while I avoid others like the plague.


looking4relief
Posted: Thursday, February 20, 2020 2:30 PM
Joined: 11/27/2019
Posts: 65


Unforgiven: l-theanine is supposed to be good daytime for concentration and relaxation, also B vitamin complex (B50) (relaxation). For evening time I would say liquid magnesium and lemon balm tea.


Iris L.
Posted: Thursday, February 20, 2020 4:01 PM
Joined: 12/15/2011
Posts: 17709


My neurologist recommended l-theanine for attention and concentration.  I can't say that I noticed any difference.  I do take B vitamins along with a senior multivitamin.

Iris


obrien4j
Posted: Sunday, April 19, 2020 12:10 AM
Joined: 11/18/2016
Posts: 451


Alz- I have missed you my friend. Mexico? Who cares about assisted living there- how about a shack on the beach? We were gonna do the RVing thing, right? Only now, yours is of the stationary kind! I really do want to go to Mexico-and live, or die, whichever comes first, on a beach. Nothing much holding me back, except for wife's retirement. I don't care about her social security- I'll make up for the salary giving English classes, which consists of talking in English...I think I can do that! Life here in the States is boring me- I want the peace and serenity of waves. Wanna join??
Michael Ellenbogen
Posted: Monday, April 20, 2020 8:16 AM
Joined: 11/30/2011
Posts: 4115


I know someone else living with dementia who did just that. I was thinking of it. Not that easy unless you have some money to back you up.