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Need advice regarding my mother's situation


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Old 02-07-2017, 07:02 AM   #1
Mandarin783
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Need advice regarding my mother's situation

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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Old 02-07-2017, 07:29 AM   #2
MSNik
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Re: Need advice regarding my mother's situation

Wow. I read your post with tears in my eyes. I can imagine what you are going through and I am so sorry.
I did deal with a similar situation at the end of my father's life because I was the closest to him, knew his wishes were to not be put on life support, but he had remarried and my step mother insisted on keeping him at home until the very end. In all fairness, she too, was a very good nurse to him and gave up her life to try to keep him comfortable.

Here is where things get tricky. Unless your mother put things in writing ( A living will) (my dad didnt) then your father automatically becomes her POA. (Power of attorney) and has the ability to make all choices. Its very sad. My father was in the medical field and we had talked about this extensively, but talking about it didnt seem to "reach" my step mom...she made his decisions and only she was listened to at the doctors offices, the hospitals, etc.

Listen to how crazy this ended up. My father fell....and was hospitalized. I immediately went to the hopsital (2 hours away) and was with him and my stepmom. My stepmom was hoovering around and telling people what to do when she decided to go to the bathroom in his room. Unknown to us, she actually tripped on her gown (dad has MSRA and we all had to wear protective gowns in his room), she fell, she broke her collarbone and wrist. When she hadnt come out of the bathroom for nearly a 1/2 hour, I went in to check on her and found her unconscious on the floor. They wisked her down to the ER where they found the broken bones and immediatley admitted her. Because she was put on heavy duty pain meds, someone else had to make decisions for my dad. My family elected me. It was not until this point ( 4 years had gone by) that I was finally allowed to make the decision to put him on hospice and thus end the continual saga of back and forth to the hospital. He died 4 days later...

Sorry if I went off for awhile there, but my point is that unless something truamatic happens, you have no ability to override your father. He is going to do what he wants to do. Legally, you have no ability to do anything UNLESS you can prove that he is incapable of taking care of her or not in his right mind to make decisions. Only a judge can remove his POA.
In the meantime, you can try to reason with him. Possibly, if all of your family sits him down and tells him that this is not what mom would want and he is being selfish doing what he is doing--- you might get through. Maybe. Its a big maybe. Unfortunately it is the truth. He is selfishly keeping her around as long as he can and in the meantime it sounds like she has zero quality of life.

I wish there was a magic wand or answer I could give you. You can talk to the social worker, but be prepared that he or she may not want to get involved. You can request home visits to make sure he is taking as good of care of her as you state, but it sounds like he is. I guess this is the only good thing that is happening, your dad is taking care of the love of his life and although you may not agree with it at this time, he appears to be doing everything that needs to be done. Its a good thing that you are getting him out of the house a few nights a week....are the men he meets with possible advocates for you to talk to him as well? He needs the support system, but he also needs a reality check.

Please stay in touch and let us know how things work out. Remember that legally, he is the POA and your options are limited. Hugs to you and your family...
MSNik
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Old 02-07-2017, 07:44 AM   #3
Mandarin783
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Re: Need advice regarding my mother's situation

Thank you so much for your quick and helpful reply.

I am so glad to have found someone who understands what we're going through and I am so sorry that you had to go through a similiar situation! I read your reply with tears in my eyes as well...

My my mother's family (who live close by) and her friends seem to be in the same opinion as us but they feel it's not their place to get involved...I do not know how the people my father spends time with feel about the situation but everyone we talk to agrees with us.

I am not sure my father will take it well if we sit down to talk to him, he keeps avoiding the subject, but I will discuss this possiblity with my brothers. We have not managed to sit down as a family and properly discuss the situation since my mother was diagnosed.

I really appreciate your reply, it is very helpful, and I will of course update here on how things are working out.

 
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Old 02-07-2017, 01:38 PM   #4
MSNik
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Re: Need advice regarding my mother's situation

Mandarin,
My prayers are with you and your family....its a very difficult thing to have to deal with. Take comfort in the fact that at least he(your dad) is treating her well and is doing what he can to keep her comfortable. I hate to say it, but she probably really doesnt know much of what is going on and as long as she appears to be comfortable, this is the best you can hope for.

Sit down with your family and really talk about whether it is worth disrupting your father's live further by talking to him again...or by taking this towards legal action. And most of all, think about what your mom would want and what you actually see in front of you. If she is content and happy...maybe it is best to let things play out naturally. There will come a time when the doctors will tell you father that nothing more can be done..it will be a truly sad day and he will need his kids to be there for him to get him through it.

I hate ALS. Honestly, it is the worst disease to watch happen. Ive seen it several times during my life and there is never a happy ending. Be strong. Be the person your mom would want you to be and celebrate her life while you still can.
Best,
MSNik
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