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making end of life choices for where and how to live
alz+
Posted: Monday, August 27, 2018 12:38 PM
Joined: 9/12/2013
Posts: 3549


I wish I had insisted on getting my house cleaned out when I  was diagnosed years ago. One of the books I read back then talked about the importance of low intrusion living conditions, not so much stuff around, clear walkways, with loved and meaningful stuff available - probably what most people already have. I just realized how much "cognitive loss" was sucked away by a chaotic undependable, unfriendly environment. It is like living as an unwanted guest in what used to be my home.

No matter how often I cried about the house being stuffed and rooms blocked with things that made me have to visually track the floor every time I went from room to room it just never mattered to my husband, who loves his mess. That mess to me implied I had no value.

 Once the significance of his indifference finally hit other things unfolded inside me. Now we are being divorced. I am choosing to live alone when it is likely beyond me so that I can die in peace in my own clean home where I am wanted.

For me this is more important than grudging help with food and the dog. The reality hit me he will only get angrier as I become more dependent. I had been the target of male anger and abuse, was raised to be submissive to cruelty, I imagined this man was going to provide me safety and comfort. I ignored warnings, forgave, tried to do better. My last wish is a healing rejection of all that, and a last attempt to live and die in what I hope is peace.

I am proud Obrien (?) said she was cutting ties she felt were not going to be supportive in her future, glad she ignored my lecturing on being grateful for someone being in charge of trips to grocery, that we have to be grateful to have a roof, water, indoor plumbing, heat in winter and a bed to sleep in. What matters as our ability to handle modern life are very simple things and yet some people are not able to give us that. Being with them is dangerous, causes anxiety, fear, anger because we don't feel welcome or wanted and how would we defend ourselves?

I was wrong if - in those very humble circumstances or in a mansion -  a person feels unwanted, unloved. To me this environment = a constant sense of being in danger. That makes"cognition" dwindle.

The lawyer promised me an easy transaction, it takes 60 days. Husband is NOW cleaning out his stuff. By the time he and his stuff is removed and cleaning people can put the rooms back together for me, the stress will likely have taken years off my life.  It is worth it.

I wonder how much of this goes on in secret, and how many people would be able to describe what is "wrong" at home.  A man in a nursing home was put on anti-psychotics for trying to escape every morning. Someone said why don't you let him go out the door and see what happens? They did and he walked to fence and stood watching a herd of cows for 20  minutes then came back in, content. He had been a dairy farmer, every dawn he checked his herd. It comforted him.

*****

 This is a healing of my entire life. 

*****

As news of this got out quite a few people who have avoided me suddenly eager to get the details and tell me how dangerous this is, am I sure it isn't dementia? How I "ought" to feel think behave live. I have asked them to leave me alone.

Some nights I am flooded with memories of being abused over my life time and have Good Cries which feels healing now that I am willing to protect myself for at  least a little while. The dog is staying with me, will have to find someone (oh god) to fence in a winter space in yard so she can go out the door but not escape and come back in without escaping.

My only fear left is that some do gooder or hospice nurse will try to have me removed for my "safety". 

I used my illness, my prognosis, to heal my soul in the way that works for me. I bought this house for my sanctuary when things were becoming difficult to handle 17 years ago, I thought this husband would want to keep it my sanctuary for both of us.

He fooled me, then I fooled myself. If I knew then what I know now I  would have done it sooner, but maybe it would not as profound as it now seems to stand up for myself, alone, against The Odds.

That we might have to live under anyone's thumb is the worst part of this illness in my view. I suspect there is a lot of abuse going on that is never spoken of - maybe because do-gooders like me tell them to be careful and be grateful. I apologize to anyone I put in doubt about knowing what to do with their own life.

love and courage  Revised in hope to make sense.


Andrew60
Posted: Tuesday, August 28, 2018 10:56 AM
Joined: 7/17/2017
Posts: 342


Im sorry that your marriage has got to the point where it can no longer be saved.

You are far braver than me to live alone, but then again, you are a dementia pioneer, so anything is possible for you.

I hope you can manage much better with a big source of your stress removed.


jfkoc
Posted: Tuesday, August 28, 2018 4:51 PM
Joined: 12/4/2011
Posts: 17438


big step alz+...we are rooting for you!!!!
Despera-termined
Posted: Tuesday, August 28, 2018 5:27 PM
Joined: 4/2/2015
Posts: 45


I pray for a stress free transition and peaceful time thereafter.

I told a confidant that I had never been a selfish person in the past but my health and well being now requires me to be.

Some people don't get that...……

DT   


julielarson
Posted: Wednesday, August 29, 2018 5:52 PM
Joined: 9/30/2015
Posts: 1155


Oh Sweet Alz, you are doing the right thing for you and that is the best thing possible.. I found with my surgery on my spine that the one I thought I could count on no matter what let me down from the beginning and it turned my world upside down for quite a while.. I now know that no matter what comes my way I will have to take care of it myself and the partner I thought I had is a sham that I put on for myself to keep me here with him. I hope for you the peace you seek and that an uncluttered place gives room for you to dance.. Mostly you will be able to be yourself and not the picture of what someone else thinks you should be.... Much love to you my friend.
Amor Fati
Posted: Wednesday, August 29, 2018 7:57 PM
Joined: 1/9/2016
Posts: 66


All the best to you. I am holding you in my prayers and thoughts. You are our pioneer and trail blazer. We are all rooting for you.

 


alz+
Posted: Thursday, August 30, 2018 5:11 AM
Joined: 9/12/2013
Posts: 3549


If you are in a relationship where you do not feel safe - chances are you right.

There are "moments" when anyone is just awful, but then comes contrition and apologies and promise to do better.

Verbal or emotional abuse stuns, and confounds. It makes no sense, there is no reasoning with it.

Patricia Evans writes about it and I read the book years ago, had recently found it on a shelf.

The Verbally Abusive Relationship, Patricia Evans

It escalates when a partner needs help, as in HELP. The damage done works like a poison, you start to build a tolerance, then you can't think, can't function. Imagine coping with that when you have Alzheimer's.

The moment I finally saw and heard and recognized the danger of putting up it, my body refused to accept it.

 my life with my original family was like intensive training on how to "cope quietly" with horrors and"remember the good  times". Almost professional experience in pretending things don't hurt.

Thank God the dementia has given me much less tolerance, may have just suffered through to a lonely unpleasant end. My spiritual practice gave me means to handle this bonding with people who can not love, and is helping me escape it. 

When I was first diagnosed I thought of group homes, big old houses with yards and kitchen and services. I am really looking forward to having my home again. To be home. 

Right now I enjoying the middle of night and finding help from neighbors, as if everyone is cheering for me.

Talk about Final Exit! Kind of "my adventure while homebound".

Life is dangerous, accidents happen. Living is worth the risk.

****

the cbd tincture has clarified my mind more than the oil which made me more physically able. I don't believe I could have figured this domestic situation out before now. I am forgetful, and prefer being alone, reading is possible for 3 - 4 minutes. Forgetting what was done or said, letting it go (while making it end) is much easier as the cognition changes progress. I wonder if it gives us opportunities to heal old wounds, if we can direct forgetting at conditioning, PTSD stuff.

appreciate my friends here on board so much. having history here is like having a refuge.

we have the rights, we are not disappearing,  we are changing



Michael Ellenbogen
Posted: Thursday, August 30, 2018 7:36 AM
Joined: 11/30/2011
Posts: 2582


I have now read many things from you with many red flags. Are you in need of help from an organization that specialize in those type of issues. Feel free to send something privately if I can help in any way. 


Jo C.
Posted: Thursday, August 30, 2018 9:49 AM
Joined: 12/9/2011
Posts: 10171


You have made a decision for what you intend to do.   That is understood.

 HOW you go about doing this will make all the difference for how well the end result will turn out and how safe you will be for the months and years ahead.  All protections for you need to be in place both financial/legal and physical.

It is best to not do a knee jerk breaking up, but to make good solid decisions with some assistance to ensure you will do as best as can be.    There is no good shortcut to this.

 You will want to speak to a professional in consultation for following steps as to how to manage for future plans; this is important as we know that dementia will advance and contingencies need to be planned should anything unforeseen and abrupt happen.

 In all probability, a lawyer will need to guide you.  I think you mentioned you spoke to one, but now you need an Elder Law Atty. to guide you step by step by step through this entire process and also for future positioning.  This has legal costs that will have to be absorbed but it is worth the expense to save yourself from avoidable disasters.

 It would be best to have your most trusted adult child with you as you travel this path; I think that is your daughter, this will help clarity.

It may well be that a "start low and go slow," strategy to best position yourself really is necessary.  The cold N. Michigan winters will soon arrive and you will want everything in plaee as best as can be including finances and physical environment including Plans B and C for unforeseen situations that can occur.

We would all want you to be happiest as you are able and safest as can be for today and also for the tomorrows.  If you have a counselor, this may also be helpful either short term or longer as you move forward.

 NOTE:   You have mentioned that your husband is not well and has medical conditions of his own.   Can you tell us the nature of your husband's condition so we understand better?

May you have the best outcome possible as you make your decisions and move forward; I so hope your trusted daughter will be able to help you as you traverse this.

 J.


alz+
Posted: Thursday, August 30, 2018 10:58 AM
Joined: 9/12/2013
Posts: 3549


Good Advice. Have done this. There is no slow benefit with an unstable man and his health issues are not my concern so am not sharing that.  Lawyer has signed papers being filed.  I know you mean well. This is first time in my life I have fought back and no risk is going to stop me from trying to have my own peace. Bad things happen even with best plans. My regular lawyer is elder care specialist  .

I don’t want to explain this again so I hope the people in similar circumstances benefit from my sharing. 



llee08032
Posted: Friday, August 31, 2018 6:36 AM
Joined: 5/20/2014
Posts: 4406


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

 Here to listen and unconditionally support your choices.  No advice. Only concern. Do they have grocery delivery in your area?


alz+
Posted: Friday, August 31, 2018 11:57 AM
Joined: 9/12/2013
Posts: 3549


I understand what I am doing is like jumping off a cliff. However a woman I know has been helping people like me, home bound, with cleaning and groceries and agreed to help me. I like her. A man who lives near me volunteered to shovel out front door and walkway and he might take my dog on 1 walk a day with his own dog. We'll see.

*****

At the time I was diagnosed I chose a spiritual path, last night I found the Little Red Prayer Book that I was given at my confirmation.

Inside I had scribbled notes and thoughts and must "have put it away"   as I was given another book which I have been using. The things I wrote in there were the words of a broken person, willing to allow anything, to open to anything to give me Love and Courage to face what was coming.

On several pages were references asking for help to prevent suicide, finding freedom on earth, help dealing with loneliness, and my lack of faith in things working out for "the best". (Iris kept me afloat through this board for a solid year and I consider her help divine intervention)

Everything written in that little book's margins has been given to me.

Even if this plan is not workable, even if I am removed from my home for "safety" or whatever, it is a healing of a lifetime.

i used my diagnosis to question what was the essence of my need to have a peaceful death. This choice satisfies that need and does not match being careful or asking experts how to be cautious. 

Not recommending this for anyone else! 

I am sharing this because I think we are not allowed to try stuff. We are told to find a safe box to dwell in and sacrifice our own wishes. Then what little else remains is trivialized and stopped to make the caregiver comfortable. Drugged to not protest more losses, closed off from life so no one has to witness, described as empty vessels.

I refuse to be dehumanized again.

this is why I wish everyone Love and Courage


jfkoc
Posted: Friday, August 31, 2018 3:04 PM
Joined: 12/4/2011
Posts: 17438


My husbands elderly aunt had a signal for her neighbors. At night she pulled down a shade, she raised it in the morning. 

We have a neighbor here, aged 93, who signals with his front door and light..We all watch out for him so that he can stay in his home.

You might think about doing this. It is totally non-invasive.

Having a heart attack and dying is very different from breaking something and lying in pain.


Iris L.
Posted: Friday, August 31, 2018 6:07 PM
Joined: 12/15/2011
Posts: 16143


I just now have an opportunity to read this thread.  


{{{{{{{{ alz+ }}}}}}}}


Despite having a cognitive diagnosis, your mind functions well and makes good decisions for yourself.  Do what you have to do to bring peace for yourself, alz+.  


Remember, you are the one who encouraged us to look at dementia in a different way, not in the way the world tells us.  We will not be dehumanized!


Iris L.

 


obrien4j
Posted: Wednesday, September 26, 2018 8:13 AM
Joined: 11/18/2016
Posts: 449


Sending email,  Alz
alz+
Posted: Friday, October 5, 2018 11:45 AM
Joined: 9/12/2013
Posts: 3549


Obrien - never got your email...
obrien4j
Posted: Sunday, October 28, 2018 10:23 PM
Joined: 11/18/2016
Posts: 449


Alz- I need your email again.