Dad prefers to stay in the dark (so to speak)

[Bill]

Some of you may have experienced this with your loved ones. My dad, recently diagnosed with ALS, doesn't want to know what he's in for. He says he's content to take it 'one day at a time'. In reality, I think he is terrified and prefers to stick his head in the sand. As I mentioned in another thread, Dad is not one to show any kind of emotion, and does his best now to convince us that all is well within him. We all know that's not the case.

We need to discuss with Dad his future, including what measures we are to take to prolong his life when he is no longer able to communicate with us. The physical changes are occuring rapidly. I care only what is best for him. We all understand and accept the inevitable outcome of this disease.

How do we broach the subject with him when it is clearly something that causes him great discomfort? And should we gently try to convince him to familiarize himself with all aspects of this affliction?

Bill

 

[brooksea]

Bill,

My husband has not researched his disease either and prefers to remain oblivious. But he knows the end results. I believe he maintains his positive attitude by not knowing the nitty gritty. He relies on me to find out the information necessary for whatever comes up or may come up in the future.

I just mentioned to him last night that the ALS Clinic may suggest a feeding tube in the near future, since his choking/swallowing/talking is getting worse. His eyes got as big as Moon Pies! LOL Sometimes you have to be blunt!

He himself then brought up the subject of a vent and declared he did not want one. That gave me an opportunity to once again tell him he needs to fill out an advance directive or living will. My husband has been diagnosed for over 1 year and still hasn't done the things he needs to do on paper.

You may have to get the assistance of the ALS Assoc or Clinic to help you with this. that's what I plan on doing to get my hubby's hiney in gear!

Sorry not much help. Perhaps someone else has more experience with this.

 

[Shasta]

Bill....Possibly laying out a framework for him to view. To see. With yes or no answers to be checked. Something simple. Remember everyone is very afraid. YOU, HIM, EVERYONE. At some point those questions will have to be answered. If you told him your ideas he might tell you his position. Then you need to get those positions in writing or you may do what you want and not what he wants. I know from hindesight that i would've suggested suction for my mother to clear her lungs because of what she was going through but she had it in writing that she didn't want that. She preferred no pain medication due to the hallucinatory effects she got from initial usage of them. What we thought we'd do was completely different than what she wanted. I'm glad we'd gotten everything concerrning her wishes taken care of. Asking him to fill out a few papers is so much less now than later on. I know you mean only the best for him. Remember, no decision is easily made but someone has to make them.

God Bless
Doug

 

[Chantilly]

Dad in dark

Hi Bill,

Since I am new to this forum, but have been on others. I found this one has a little more tact. I understand your frustration of your Dad and als. I found that I had to allow my dad to come to a place where "he" was ready to talk. I tried and tried to make him talk about the als, however, the more I pressed the more he closed. I ended up upsetting myself more and making things worse for him. Don't give up on him, sometimes you have to let things sink in and when the time is right maybe throw out a question and start slow.

He is trying to deal with an overwhelming disease and probably has more in his head to think about than we can imagine.

Chantilly

 

[Peg B]

Hi Bill,

It sounds like one of those times when Denial really is a defense mechanism. That was my first thought. That your Dad needs time to take this in and digest it so he can, if you pardon the analogy, eat this one bite at a time.

My second thought was he is your Dad. I know telling my children was much more difficult than telling my husband, siblings or friends. My children were 27 and 24 and the last thing I wanted was to burden them. So maybe your Dad may be more willing to talk to someone his own age who is not as directly impacted by this as you are. Please remember it is our job to take care of our kids not theirs to take care of us and the refersal of those roles is really tough. Also I remember my mom was much more comfortable having decisions made by my oldest sister than me (third oldest) and my mother in law wanted her oldest son's blessings on decisions more than my husband's, even though she liked some of my husband's ideas better. I think this might be worth looking at in your own family dynamics. I hope you are all able to come to peaceful terms with this. Sincerely, Peg

 

[Sammantha]

Think of it this way, when you were little and got hurt if your parents freaked out and kept talking about it over and over and how bad it was, it made your anxiety worse and you would cry more and harder. Then it would be hard for you to relax. Your dad already has something horrible to deal with, he does not need to be reminded of it day and day out, take things as they come.... That is all you can do with ALS.

 

[terri]

in the dark

I had/have a hard time making choices for others lives. My husband had ALS, which is different than dealing with a parent I know. Anyway, he chose to take it as it came too. At first diagnosis he wanted to know everything by doing his own research and not talking about it. His doctors had already explained the progression of the disease to him. After his research, which was probably only a week or so, he just didn't want to talk about it much at all. He would not discuss options with me about his care. I'm sure he thought he would be okay for a long time and he could deal with Wills and stuff later on. Well, I was doing my own research and the fastness of possible progression scared me to death. Within the first month I made appointments with the attorney and the funeral home. I told him I would respect his decisions of just living and not talking about it any more than he wanted but that I was not willing to make all the decisions by myself. That he had to make his own decisions on how he thought he wanted to deal with his future care and that if he wanted to change those decisions at any point down the road he could. But for me, he had to help me make all his wishes known. We went to the lawyers and made out the wills and POA for both of us and to the funeral home and made final arrangements for the both of us. Afterwards, we went on a little vacation. I am so glad I practically forced him to do these things. He never changed his mind on his care that he chose in those early days of the disease. All of this rambling just to say, I would make appointments for him and take him to them. If like us, you will both rest better when it is done.

Take care.