Different ways of processing/grieving from the PALS

[lovemysister]

One of my biggest struggles is the different way that my sister and her husband and I are processing her diagnosis. I honor and respect their decision to try to keep life as normal as possible for as long as possible. I truly do respect their choices and decisions - how can there be a "right" way to go through this? They are doing what is natural and consistent for their family in the context of how life was before the ALS diagnosis.

I process life differently - have had a lot of counseling over the years and work hard to deal with my feelings and face reality. So when we celebrated what is likely her last birthday last week, I wanted to in some way honor and acknowledge and thank and bless her, especially while she can still talk and engage normally. I didn't express this to them, but it made the birthday extra hard for me because there was no acknowledgement at all of the reality of what is happening.

This is my first post - I figured if anyone could understand what I'm experiencing (besides my counselor) it might be fellow caregivers. I don't really expect advice, just wondering if anyone else has a similar challenge. Sometimes I feel like I am crazy - I might exchange a glance with my brother-in-law that is full of meaning, but we never speak of it in a way that helps process what is happening.

I suspect they are afraid of the feelings that would come out if they "pop the cork" but in my experience that just generates tremendous anxiety because we don't talk about the elephant in the room. If I try to ask her how she is doing, how she is processing, she has told me "I just want to have a nice lunch with my sister."

I am finding other folks to process with, and that is helpful. Hoping the folks on this forum can be that sounding board for me as well. Thanks for listening.

 

[lovemysister]

Quick question - I imagine my sister is a part of this forum and would hate to have her read this post. Are these posts private to Caregivers only?

 

[vickim]

No this is a public forum. After you post a number of posts you can private message to a particular person. If you don't want your sister knowing it is you change your personal info that appears under your member name.

 

[ottawa girl]

How do you know it's her last birthday? Goodness gracious, as a PALS, when I celebrate an event, I celebrate the event! Of course there are times when I wonder if it's the last time I do this or that, but dwelling on it would catapult me into the future, and I wish to remain in the present. That's not denial if my ALS, it's just living today.

I love my sisters dearly. We've had more heart to heart talks than I could count. We know how we feel about each other. We share our emotions and thoughts.

You know, it's possible one if my sisters could die before me - accidents happen, illness happens - nothing is permanent. If nothing else, My ALS has given me and my family to be more grateful for and to live in the here and now.

Don't be so sure your sister and her husband haven't popped the cork in private. I'm betting, more than once, in the deep if the night, they're facing this together.

Just have a nice lunch with your sister. She will share what and when she wants to. Or not.

 

[Katie C]

What Elaine said. One never knows... everyone's birthday could be their last! Between the time of Glen's diagnosis and his death, both of his parents, my mother and my brother died. None of them was expected! Why not celebrate the life that is for a day, rather than dwell on the inevitable. Your sister and brother in law know what is to come, believe me. Perhaps in quiet moments when nobody else is around they talk about it. That's when Glen and I did. Please respect her wishes to handle this in her own way.

 

[pearshoot]

God has not put a tag on your sister's ankle my advice ask her what she wants to do and follow her wishes, don't try to inject what you think should be done unless she asks

 

[Barbie]

everyone has to deal with this monster in their own way--the reality will hit soon enough so if she and her husband deal with it by pretending every thing is fine, so be it. you are smart to seek counseling if that helps you. All you can do is control yourself and your response. it is hard, but let them have their own way to deal--I am sure given time, your sister will turn to you for moral support.

good luck,

 

[bowser]

Here is my 2 cents................... being diagnosed with ALS is like being diagnosed with terminal cancer.

There is no good outcome.

People react to that news differently.

Some people are " realists" and see things more in a " black and white " way.
Some people believe ............" take it one day at a time "

Some people are in a state of denial because they can't deal with it.

Many times all three are evident with in the same family and amongst siblings.

We all have different ways of coping.
( I fit more in the " black and white " category )

 

[zoohouse]

It is difficult sometimes to understand another person's way of dealing with different situations. I am struggling with how my husband's family is dealing with it. Tim was diagnosed just over 1 year ago, and he moved to Canada with me last October. He has a brother that lives 4 1/2 hours away, and the rest of his 11 siblings live in the US. I understand that there are financial constraints that may make it impossible for them to visit, but they all have phones, and computers. We have visited the brother that lives in BC 2 times in the last 3 years, and he has yet to come once, in spite of the fact that he has the finances and time to take many vacations, and trips to Texas to visit family there. Tim thought that his family was very close, but he told me this morning that he feels like he is " dead to them", as it seems communication with all but 2 or 3 has stopped, where they used to contact him regularly before. Tim has no bulbar involvement yet, so his speech is very clear, but typing is almost impossible for him now, and he could easily talk on the phone, but seems to be unable to reach them. I have a sister that lives 4 1/2 hours away, and she and her husband have come 5 times since he has been here, and although it wasn't specifically to visit him, always take the time to sit with him and talk. If I was at work, they took him out to do things with them. My other sister and her husband who live locally, visit at least weakly, and have added a ramp to their house, so that we can visit with them. They have only known Tim 3 years and yet they have gone out of their way to welcome him, and make him feel loved.
I believe that is because we lost a brother at the age of 42, 12 years ago to cancer. We felt it was a blessing that we had the time to spend caring for him, and showing him how much he meant to us. He was a very tall strong man who acted very tough to protect himself from being hurt emotionally, but when all his 5 siblings took the time out of their life to care for him he dropped all his walls. He told us daily how much he appreciated our love and care, and one specific comment will always rest in my heart. He said "I didn't know that you all loved me this much. And If I hadn't contracted cancer, and had died a different way I may not have ever known."
I am very sorry that I have hijacked this post, but it opened some deep feelings that I have been holding back for 11 months. One of Tim's favorite songs is "Live like you are dying" and it is so true. Tell everyone that you love how you feel TODAY as you may miss that opportunity and will regret it for life.
So as to your question, I would say, spend some personal time with your sister, or write a letter telling her all the things that she has done to bless you, and how much you love her. This disease could take your relationship to a whole other level.

 

[ottawa girl]

Paulette,

Your post breaks my heart. Maybe, if you're up for it, an intervention with his siblings might be a propos? Maybe Tim's kids can get the ball rolling? Just so there are no regrets. Just so Tim gets some joy.

I don't believe all ten siblings are in denial. I think they just " don't get it". Your step kids can step up and give their aunts and uncles the lay of the land.

Your family, on the other hand, sound great! As do you.

 

[Barbie]

I think sometimes people don't want to deal with bad things, so they pretend they do not exist. I think it is awful! I would send them all a nice email but be honest. start with what Tim told you, and then tell them they do not want to have regrets. let them know, they don't have to call daily, but a weekly call or email would be appreciated. suggest they visit also. put the ball back in their court, but let them know you expect them to play. If they still ignore their brother, they are worthless. (that was the nice word...)

 

[KKay]

ALS can be a long or short journey. There is no way of knowing this for certain. The pain and struggles of a PAL are known only to themselves. How they choose to do "deal" with it is up to them. We deal with each setback as it comes and while it is sad and there have been many private tears, we have today. Should we lament the obvious? The big elephant in the room. Or work to make each day the best it can be? If there was a cure we would be working it and fighting with everything we had in the arsenal, but there is not so we ride it out as best we can, being the best we can be. I think one reason people seek therapy is to learn how to accept what they cannot change and be joyful and at peace despite the problems. No matter what, once you accept one problem, a new one will take its place. Big or small. For this ALS, there are few answers other than take good care of today and what it gives you. Your sister and brother in law may already know this. There may be days when they are not feeling this way, but then find a way to get themselves "back on track". This is your sisters life and what she has left of it she may want to simply focus on LIFE. Being a faithful person I believe her reward, for her appreciation of life and loving the people in her life and taking this time to focus on that will be great. Not only in those she leaves behind and how they will remember her, but also in heaven.

 

[bowser]

The thing that irks me the most is when close friends/relatives shy away from someone who becomes disabled by a disease and use the lame excuse.............." we want to remember her as the way she was"

To me , that is the most SELFISH comment a person can make.