Family Support Issues

[Paula]

Just wondering if anyone has had any problems receiving moral support from family members. My dad has a very large family that have always been very close ( many family getherings etc.), however only two of his siblings visit and call on a regular basis. The rest of his family haven't visited except for once or twice in the last six months. They have almost shunned us and he feels completely deserted by them. My sisters and I now feel that we are not only losing our dad but also our extended family. Is there anyone on this forum who has such a screwed up family? If so how do you deal with the extra pain and stress?
Paula

 

[Al]

Hi Paula. You are not alone. My family isn't in a big rush to visit either and I have 7 brothers and sisters. One lives out of province and she knew a guy once with ALS that lived for 17 years so she thinks I'll be fine. Friends will stop coming around too as the disease progresses. They just don't know what to say. It's not easy to deal with it but you just have to grin and bear it and be there for your dad as much as you can. AL.

 

[autumn]

Hi Paula, The bad news is that your dad's family hasn't been there for him or for you & your sister's. The good news is that your dad has you and your sister's and I hope there are other's who have been there for him too. The only thing I can say is to focus on the people who do care and who want to be there and think of them as family. Don't waste your energy wondering why the other's aren't bothering. If they're not bothering, they're not worth worrying about. You need people who are there for you now.

 

[dana]

I know what you mean about family and friends not coming to visit. At first it really upset me that some people were not coming very often (if at all) to see my dad. But I realize that this is something that they have to deal with and not me. I see me dad several times a week and have become more and more comfortable with the progression of the disease. For people who do not see dad very often, it becomes really difficult to accept and see the changes that are going on with him. These people are fighting their own demons with what is happening to dad. They feel uncomfortable, sad, and don't know what to say to dad or us. It is their loss, really. Some day my dad won't be here anymore, and these people will feel bad that they didn't visit as often as they should have. I will never have that guilt because I see dad all of the time. I have enough on my plate and I try to not allow myself to carry anger from family and friends not coming to visit.
Dana

 

[Lisa Lane]

I know exactly what everyone is talking about. Family and friends don't come or call. At first you feel so isolated. But, then you start to realize that people really don't know what to do. My favorite is the standard card that says " if you need anything, please call". What a cop out! A phone call would be fantastic. People are really afraid of ALS. Most of us were probably real go getters in life. I know I was. I was the one that took charge and made things happen. I always tried to do for others thinking that if I ever needed anything one day, my good deeds would come back to me. I was wrong. For the most part people only consider themselves and their needs. Which is sad. But, our society is very "me" oriented and when something like this happens people really can't work it into their schedules. It is hard on my kids, they are in their 20's and for the most part they are in denial. Can you blame them. It is hard to watch your mom turn into a vegetable. We had a huge 4th of July party and I invited friends that I haven't seen in 20 years. They all came, but only one has contacted me since to see if she could come over for lunch. The only person that I can truly count on is my husband. I thank God that I have him. We all need one person that is our rock. It is a lonely disease. I think that most terminal illnesses are like this. People not mean to be selfish, they just don't want to be reminded that our life on earth is not guaranteed.

 

[TBear]

Hi Paula:
You are not alone. My wife's family disappeared as well. Her sister, whom she could be with several times a week ended up only visiting once per month... and even then she spent much of her time dealing with my kids. Of a family of 6 siblings only one visited more than once a month and they are all within an hours drive.
My kids were part of the rock that kept the family grounded through the sickness and our motto was to get involved... grab a mit and get in the game! WHen the end came, we were able to cope ... those that disappeared are still coming to grips with the loss and it's been over 5 years!
I've seen it before and others will likely verify this... you find that support for your dad will often come from places where you east expect it.

CHeers
T.

 

[MtPockets]

Pauls and others

I really think part of the problem may also be not understanding what ALS is and the fact that someone cannot CATCH it by visiting us. It's almost like they associate anything with letters for a disease with aids or something. I know they have trouble trying to know what to say to comfort us, but just visiting us and listening sometimes helps more than anything they could say. That is, while we can still talk.
To others who have not known someone who has had ALS and the progress of the disease it would help if they would at least look it up on the internet and try to understand what we face everyday. We know we are dying, just not exactly when, and one of the worse feelings in the world is to feel your are dying alone, with no one to be there to care and comfort you in the process.

Education about ALS would probably help our friends and loved ones who have just vanished to let us die alone. Dang that sounds morbid, but it's true. And it really hurts when you have friends who know all about ALS and still stay away. I think it takes a brave person to face death, whether it's your own, or a friends. But they need to face it, because it's coming for all of them at one time or another. The bible says it's appointed unto man once to die, and after that the judgement.

Our friends will have to answer for their actions later, but we will all be answering for ours soon. Have you settled up with God? If you lack peace about dying them maybe you still have something that needs to dealt with about your relationship with him. No one can answer that but you.

God Bless,
Big AL