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Mandarine783

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NL
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Noord-Holland
I would like to share my mother’s story with you in the hopes that I can receive advice regarding my family’s situation. This might seem like a very ‘dry’ explanation of the situation, but I assure you that there are a lot of emotions involved

My aim is to give the clearest and most objective picture I can. I am not expecting a solution; I am very much looking for opinions and advice from people on this forum who have experience with such a situation.

So here goes:

In 2008 my mother started experiencing breathing difficulties, she was hospitalized a couple of times and was prescribed pills for anxiety because it was a stressful time in her life. The pills seemed to help for a while.

In 2009 my mother started slurring her words and very quickly she reached a point where she could hardly talk clearly.

After many tests and speculations my mother was diagnosed with ALS in 2010, at the age of 61.

My Father was pretty much in denial and when he finally accepted the diagnosis he set out to ‘win’ the battle against ALS. He did everything he could to find the best doctors, treatments and medication for my mother and he took very good care of her.
My mother was still taking the pills she received for anxiety the whole time and she continued to do so because it was recommended by her doctors for dealing with the situation.

From the moment she was diagnosed my mother said she didn’t want to be on life support or bedridden. She really insisted on it and made it very clear that a time would come when she would need us to help her move on. I accepted, understood and respected my mother’s choice, it wasn’t easy, but I totally understood my mother and my two brothers felt the same.

My father stayed optimistic and didn’t want to think about this possibility. His approach was: We’ll cross this bridge when we get to it.

Shortly after my mother was diagnosed with the illness my father had a minor stroke and recovered.

In 2011 I left the country and moved to Europe, I visited my parents every 3 months. My brother also lives in another country, so it’s just my oldest brother who lives close to our parents.

In that same year, my mother took a very bad fall backwards, with her head and back hitting a very hard floor. Things started deteriorating very quickly from then on.

Every time I visited I could see how my mother’s condition progressed. Until she could hardly walk and breathe on her own, she couldn’t eat and drink anymore and had a peg tube inserted.

In 2012 things started deteriorating quite fast, my mother became very anxious and depressed. She did not want to continue and mentioned it frequently.

After having a serious talk with my mother about her situation and about the fact that she wanted to move on, I talked to my father. I wanted to make sure he prepared the proper documents for not resuscitating my mother or extending her life when the time came etc. He said it was nothing to worry about, that it would take a minute to arrange, and then he started to cry (the only time I heard him cry) and he said he couldn’t let my mother leave him, she’s his best friend and he couldn’t let her go.

On that same day (it was my father’s birthday…), within a few hours my mother couldn’t breathe anymore, an ambulance came, she didn’t want to be evacuated, she wanted to die and my dad convinced her in the last seconds to go to the hospital. The next day I flew there and she was on life support, the forms I talked about with my father were not prepared on time.

She was given the option to either undergo a tracheotomy or to try to breathe independently so she could go home and ‘find a solution herself’. She was warned she might not even make it home and she seemed very frightened.

A day or two later we while me and my brothers were at my parents’ house, our father called us from the hospital and said my mother agreed to undergo the tracheotomy, he was very happy and started planning all of the logistics of finding a proper home for him and my mother, he wanted to learn how to take care of her and he was completely dedicated to her.

Until this point a social worker was involved in the situation, she was aware of my mother’s wishes and she tried to support and help us as best as she could. But when my mother left the hospital, my parents decided they didn’t want her to be involved anymore.

So my parents moved to my late grandparents’ house, the house my mother grew up in, and my father indeed turned into a professional nurse and took very good care of my mother. At first he did not want any help, he had a nurse come to the house twice a week to help him bathe my mother and he did the rest.

My mother was receiving quite powerful psychiatric medication as well, and she still does, because as I mentioned she was very depressed and anxious at the time.

My brothers and I were very confused during this whole time but we were optimistic and we hoped my mother would at least have a year or two where she wouldn’t have to struggle for every breath anymore and could have a more peaceful and easy departure at the house she grew up in. We agreed that we wouldn’t interfere since this is what my mother wanted. The one thing she did say at that time was that she didn’t need our help or the help of the social worker. And that she’d let us know if she wanted our help.

After saying this, my mother stopped communicating completely. During her hospitalization she wrote a bit with her finger on her bed sheet but not much and then shortly after my parents moved to my late grandparents’ house she received the equipment and software to control a computer with her eyes, and started playing candy crush, but she did not communicate with us. And she hasn’t communicated with us until today, not a word. Even though we have all tried to communicate with her in many ways.

Since then my mother has been in bed, and she’s been playing candy crush. She is still on a lot of medication and she has not spoken to us at all. She doesn’t go out and she cries a lot (this is the effect of the illness and I have no way of knowing whether it is also from distress or sadness or anything else). My father takes very good care of her around the clock. He also refuses to talk about the future, and he is getting old and is not taking very good care of himself.

In the past year we’ve encouraged my father to go out a few times a week, because we think it’s very unhealthy for him to be at home and take care of my mother around the clock, so he now goes out once or twice a week to a restaurant with family/friends. My oldest brother visits our parents a lot and helps my dad with his errands etc., my uncle (my mother’s brother) lives next door to my parents and he comes to visit every now and then and so does my aunt, their sister, who lives close by. And as I mentioned my other brother and I visit every few months. It has been almost 5 years since my mother was put on life support.

In the past year my brothers and I have been discussing the situation again, it hasn’t gone the way we thought it would, and we wanted to discuss it again with my father. I tried to speak to him about it and he said that he would never betray my mother and that helping her move on is not an option. He also said he knows her better than we do and that she is happy with the way she is. The subject was then changed very quickly.

So this is the situation and I would really appreciate any input anyone might have, me and my brothers are not at peace with the way things are right now, we feel that we should now be more involved and I wanted to ask for advice before I contact our social worker, which might be against my mother’s wishes.

I thank you in advance for your help and I am here to answer any question you may have.
 
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Firefighter58

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Far too long, Sorry but Pals do not have the time, desire or the ability to read something that long. Try to shorten it up a lot.
Al
 

laurel

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Mandarine your story was beautifully written and clear, but I am not a person with ALS so I had the time and ability to read it. Like Firefighter58 says it is too long for most PALS to get through it though. Having read what you said, the message is that we all need written legal directives for what intervention we want medically. I think you and brothers have to step back and let your father carry on as he is the legal decision maker for your mother. I understand how painful this is for you and how it causing terrible lack of peace for you as it is a terrible situation since she feel your mom wouldn't want to live this way, but it is my belief that you need to stand back and support your father as this time. You have some wonderful supports living close by for your mom and that is more than most PALS have. God Bless you and your family.
 

Mandarine783

New member
Joined
Feb 7, 2017
Messages
2
Reason
Loved one DX
Country
NL
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Noord-Holland
Thank you very much for your replies and for your input. I'm sorry for the long post, I will create a shorter post.
 

affected

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The long post is fine - it does mean some PALS won't get through it all, but that's ok.
Right or wrong your father, as her husband, has the right to these decisions.

It very much highlights the reason health directives need to be done. I'm sorry for your distress, I don't have any advice really because he is her husband.
 

swalker

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Here is my perspective as a PALS.

It is their decision to make. Unless both are mentally incompetent, they have a right to live their lives the way they want.

You don't have to agree with their decisions. It can make you frustrated. But, trying to get them to change could do great harm to your relationship with them.

You might have a better grasp of future consequences they face for the decisions they have made. You can make plans for mitigating the impact of those consequences. You can communicate what some of those consequences might be if you think they are unaware. But, telling them to make changes would likely be very unwelcome.

If you believe there is abuse or an unsafe situation, then you should notify the authorities (I don't sense any of that from reading your post). Short of that, let them lead their lives as they see fit. That is what I would want for me.

Steve
 

KimT

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As a PALS my only recommendation is to love them both unconditionally and try to find more time to spend with them helping out.
 

lgelb

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Hi Mandarine, very sorry that you find yourself here under these circumstances.

You say that your mom doesn't communicate with you or your brothers any more. Does she communicate with your father?

If she is on "powerful psychiatric medications," there should be the opportunity to fine-tune these so that she cries less, which might lead to other improvements. Is Nuedexta one of the meds, given that it's indicated for emotional lability in ALS? How is her condition monitored medically?

I do not think it is out of line to remind your father often that psychoactive drug titration is possible, and ask him to explain his disinterest given your mom's evident distress coupled with her inability to communicate (even if he thought that her crying and withdrawal do not reflect depression, these cause physical and mental distress in themselves).

While your dad may legally have the right to maintain the status quo, there is a moral issue at play as well, to the extent that you have reason to believe, unless demonstrated otherwise, that her cognitive and emotional health could be improved.

Best,
Laurie
 
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