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goodgreif

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Joined
Oct 10, 2014
Messages
13
Reason
CALS
Diagnosis
09/2015
Country
US
State
usa
City
usa
My husband has been going to the doctor for several months now and he now has a probabable diagnosis from the first neurologists and the ALS Specialist said it was early stges and he is confident he will give him a diagnosis at the next vist. He is goung to another ALS Specialist for second opinion. My family has been very supportive in coming to visit and call him but his family has not. I cannot understand this at all. I know he worries about being bedridden and not having his family vist him.
 
That has got to be a hard situation. Most of our family lives about 4-5 hrs away but have been here multiple times to visit even though there has been a rocky relationship with dad and some of his family. The ones that can't come have called often. Maybe they are in denial still. After diagnosis is confirmed maybe you could put together a small packet of information on ALS as well as information on his current state and care plan and send it to them to inform them more. Unfortunately you can't make them be supportive but you can keep them informed and you will have done your part. Are there possible underlying family issues that need to be dealt with? I am sure that no matter what his family does he will be surrounded by love from you and your family.
 
>I know he worries about being bedridden and not having his family vist him.

personally, I can't think of anything worse ....
 
Just my opinion, I think a large part of the problem is denial. If they don't see it then they can pretend it's not happening. Unfortunately this will hurt your husband. Hopefully they will 'wake up' before it's too late, for your husbands sake and theirs. I know what it's like as the only family I've heard from in months is my parents and my son. Only my son has been to visit
 
send 'em youtububr 'ALS ABCs", if they watch it they will get it, if the don't **** 'em
 
There have been a couple of threads recently concerning this problem. It seems that the parents of men with ALS are unable to cope with their child having a terminal illness. I believe this extends to more than ALS...

No answers from me unfortunately. Just an observation that your situation is, sadly, not unique.
 
so sorry for both the diagnosis and the family problems. I would head it off at the pass and tell them how he feels and what you want from them. don't give them a chance to hurt him!
 
Goodgreif, I also started a thread in the rant area about this...family doesnt get it.....my husbands mom lives 5 miles away and his dad 40 miles. They both drive all over the place but not to see their son. This week, hell froze. Both came to visit. The mom can barely look at my husband, her son, and cant hold a conversation with him. His dad will hang out with him when it is convenient or if I call to beg. His brothers come from a thousand miles away...one lives in NY and one in TN to see him. They do whatever they can to help when they are here for me and for him. Their wives are wonderful. Like Dalvin said, I think it is about denial but I also think its about being self centered and selfish. The dad told me its hard to see him not at his best.......

My suggestion to you would be to build your support network with friends and neighbors you can count on. Find out what respite care is available thru your health insurance, als association etc.

Most of all, love your pals and treasure your time with them. Steph
 
I was in the same situation. My family was so supportive. I don't know what I would have done without my sister and brother. My sons were supportive also but it was so hard for them to see their dad the way he was. My youngest son would drive 3 hours and stay for 4 and turn around and drive another 3 hours home.

As for his family - please........2 sisters live less than 5 miles away. They came maybe 4 times in 2 1/2 years. His other sisters live 8 hours away and came once. His brother was wonderful. He lives in Texas and came down at least 4 times and called once a week. Joe was the first one the sisters called for help and he was always there for him. Shame on them for not being there for him. I know this hurt him.

When he passed away I refused to call them (my youngest son did). The sisters from Florida didn't even come to the funeral. They said they couldn't afford it. The only one I hear from is his brother in Texas. He calls once a week. I wish his sisters no harm but if I don't see or talk to them again it will be OK with me.


Debbie
 
I has been surprising those who drop by and those who dontr
 
My husband's family was never what I would condider close like mine is. They act like they just saw you yesterday when they really only see you at Christmas but to them that is normal. But I thought in a family health crisis they would have felt the need to come see thier son. I know it is bothering my husband. I have already told hid Mom that he would like her to call and visit. She did call but has not visited. There really is nothing else I can do.
 
We faced a very similar situation when my husband was diagnosed. At first I really struggled (and I mean really!) with the apparent disinterest of his parents. It broke my heart for my husband's sake and left me in the loneliest place I have ever been. Things have changed a bit in that they have moved closer and his mother now visits once a week. His father has not visited him once. We have driven to them to visit them both, but it is very awkward because they pretend like everything is normal. They are intent on maintaining perfection in their lives and my husband's deterioration does not fit with that picture so they pretend it is not happening. It was driving me crazy worrying about them and their behaviour. I came to the realisation that to save my sanity I needed to accept that everyone is different and that I would rather channel my energy and emotions into loving and caring for my husband in the best way possible than waste energy trying to change them. I hope time helps you make peace with your situation too. Thinking of you.
 
Poppies, I understand what you are saying. In theory anyways. The reality of it, for me is a little harder since both parents are pretty close. My husband hasnt been the favorite child or the neediest child or however you want to term it. He and we have always believed that we should try to rely on ourselves for our mistakes and the fixing of them. I think the parents, in our case, see this as our issue to "fix". They have not inconvenienced themselves for us....baseball is on so we cant come help out (dont you remember we have one), and assorted other odd excuses My mil came on Thursday with the sister in law an dthey made an absolute mess of both my bathrooms. My husband was so angry....partly because he could do nothing to fix it and I was coming home to it and partly because because of their lack of consideration for me and to leave them unusable for him.
 
My PALS has a totally different outlook than I do when it comes to family support. He is very forgiving and always tells me that he understands they just can't see him this way. My attitude is very different....I finally told several of our relatives to pass along the word that if you don't feel the need to be here for him and for me now then I definetely won't need you in my life later. Our friend Tom has made the trip from Iowa 3 times since Grumpy's diagnosis....you can drive 30 minutes!
His mother is 82 and makes the trip once a week, always bringing a full meal with dessert but two of kids haven't seen him since diagnosis.
Gooseberry I think they would be invited back and handed a bucket full of cleaning supplies for the bathroom!
~Kaye
 
Kaye, I feel like you, if you cant be around now when we need you, I dont want you around later. I feel like its a.character issue and I dont choose to have people around me that are like that. The bathroom thing wasnt the first time but I have been struggling lately. She and I are going to have this talk in a couple weeks. I dont appreciate having people in my life that take and take and take sucking me dry even if they are family. With my family I say my peace and move on...so do they. My husbands family isnt like that. He has always dealt with them until I say if you dont deal with it, I will. His parents are both 82 but they drive 1000s of miles on a regular basis. They do things for other people. Their hearts are generous just not towards us and that is what hurts.
 
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