Hi everyone
I'm looking to see if I can get any support from the CP Community. My 61 year old father just told me he has ALS and it's already made his right hand stop working. He thinks his left hand will soon follow and so on and so on.
My parents live in Manitoba and also have a 17 year old daughter living with them (my sister) who at the moment doesn't know about this and is about to start grade 12.
Ugh. Help.
Location: A simple man leading a complicated life....
Exp:
It would be best that you tell your sister so she has time to come to grips with what your dad has. Since she lives with him she will have to help him with the ALS for as much as she can until it becomes a case where home care is needed. Knowladge is power.
Sorry to hear of your father and his ALS. I had neighbour who had this and it was tough watching the illness take control over him. Be strong and positive for your dad and your sister as they will need all the support they can get.
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Sorry to hear this. I would agree that your sister should be told soon. She likely realizes that "something" is going on, so the sooner she knows, the better. How to tell her, is another story, but hospitals often have medical social workers, so perhaps there is someone like that who can be consulted.
My Aunt had ALS. She was the 2012 Betty's Run for ALS ambassador. It's the worst disease ever and I was blown away how quickly it impacted her. Like you mentioned one day her back was sore, the next month she can't walk, the next month she can't use her hands. Be prepared with how quickly it impacts your father.
My uncle got tremendous support from a variety of ALS institutions. He as able to get a full time assistant worker who lived with them to help out. Then when she was in very poor shape they installed a machine to be able to bring her upstairs. I would look into every possible avenue you can because there is a lot of help out there for this horrible disease.
I still have many friends and family in Winnipeg. If they can help at all I can make a phone call for you anytime. My folks are there as well and could help if needed. As for your sister, that is totally your families call. As a teacher I will say students who come into the school year knowing about something like this, and access the support network that the school offers, are able to cope and find success far more often than students who find out any shocking news during the year. Just my observation of generalities and by know means any kind of guidance, just support. I wish you and yours all the best in this challenging time.
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I'm sorry to hear that Drummer, that's a tragedy for your family.
As far as the Sister thing, I would encourage your family to tell her, she has a right to know, and if you don't or hide it from her it can create resentment and anger and a tremendous amount of fear.
I know if I was her I would want to know if someone in my family was going to go through that.
There are support groups for ALS there are family support groups out there that can help. Also it might not hurt to make sure that you can find someone to talk to so you don't get overwhelmed. Diseases like this in the family are real tough battles, and they tend to wear on you.
Good luck to you and your dad.
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My name is Ozymandias, King of Kings;
Talk to your Dad, you never mentioned a mom in the picture. They should be the ones to talk to your sister. Or do they want to keep this a secret? If so why?
Should you tell her? Absolutely. Yet if you do you need to be able to deal with a teenage brain. She needs to be an adult. Never the less she needs to know. Even if she is not ready to handle this, she needs to know now!
I have no experience with ALS. I have tonnes of experience with Cancer though. My best friend as a kid, Family transfered to Calgary six months later get a phone call asking me if I would attend his funeral? 6 months earlier I had beat him in a 3k race. Slimmest of margins! Kid was in amazing shape, now dead. Hit me so hard! 16 years old and dead from cancer.
Cancer has taken both Grandparents on my Dads side of the family. Actually Dads side of the family is all dead. Brother sisters Aunts Uncles, all dead. Cancer cancer cancer! Horrible experience with disease and then it strikes home!
At 40 my Dad was diagnosed with Colon Cancer we was not expected to survive. At 50 liver cancer, at 60 prostate cancer. At 67 clean bill of health! Nothing was ever hidden from family members. Trust me I dont want to hear the news my Dad has cancer. Yet the family supports him!
My father is amazed to be alive today. Family was around at all times to support him. Dad hated going through all of this. Did not want to trouble his family. Didnt want anyone to know. Dad has had procedures done at the hospital that had me carrying him out of the hospital in my arms! He hated that! Yet at the same time loved it!
Dad could not walk, but was saying get me the F..k out of here! His son carried him out the doors of the hospital.
ALS is not Cancer. I dont want to compare diseases. Cancer is a killer and kills fast, ALS is the same but kills slower. No competition here. Just life!
If your Dad wont you need to tell her. When you tell her make it about Dad! Not her! She is gonna feel awful. Like how you feel. Yet from this moment how can you all react to this? How can you help your Dad? Your sister may lose her mind. I would. And I have!
End of the day people need to know. Loved ones need to know. Cant provide proper care to your Dad without others knowing what he needs.
Do you really want your sister terrified when your dad falls down and cant get up. She is not going to be able to lift him up. She is going to freak out. Then you are going to tell her you knew this would happen? She is going to hate you for the rest of your life.
She is going to think that if she was told about this she could of done something! You denied her the chance!
Tell your sister now!
Never the less, maybe with family support your Dad does well with treatment. Your Dad has tonnes on his mind these days, pure stress like my dad battling cancer! Dad does not want any help from family. So he says! Yet at the same time as I carry my dad out of the hospital in my arms, my Dad is embarassed about that. Yet at the same time is encouraged and giving the doctors the middle finger! My Dad does not give the middle finger ever, that was the drugs.
Yet also knows no matter how bad things get, his family is behind him.
Tell your sister now! Waiting will not help things. She is gonna be pissed off with you and devastated at the same time. Expect to be called every name under the sun with swear words. That conversation will suck! You wait six months, your sister will never speak to you again.
Put you feelings to the side. Tell her! Your Dad will benifit from this. Even if your sister is made of molasses, cries on a dime, you need to tell her!
Your dad has a battle ahead of him. Needs strong people their for him. U am guessing you think your sister is not strong. This is her father, she will definitely have a few weak moments, in the end though she may end up be stronger than you!
Tell her! Family member needs help! Give her the chance to help?
Will it work? My Dad has had cancer three times. Everytime it could of killed him. It has killed all of his family. 67 year old, and a clean bill of health. I expected my dad to die three times already.
Yet at 67 Dad lives. He should be a dead man. My Dad knows this too.
ALS in the family? TEll all family members.
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Thanks for the responses everyone! My mom is in the picture too. She lives with my dad and sister in Winnipeg. The plan is to have them tell her in about a week from now. My parents and sister are visiting me from Winnipeg right now - the annual family trip to Alberta to visit with me and my wife. I just had no idea it would be my dad's last.
My mom has always relied on dad to get "stuff done" around the house etc so I sense this will be a major game changer and I will be spending tons of time in Winnipeg.
Drummer - so sorry to hear this awful news. It will be a major game changer for your Mom, and it's great that you can spend lots of time in Winnipeg to help her out when needed. As much as it's possible and appropriate, I would try and encourage her to learn how to do minor stuff around the house and be somewhat self sufficient. As you go there to do things, maybe try and teach her how to do them herself. It will help her feel less overwhelmed. The same goes for your sister.
I wish the best for your Dad and your family as you go through this. We are always here to listen if you need to vent.
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Drummer - Sorry to hear that. This is an awful disease and other than a friend of mine putting together one of the largest benefits to fundraise for ALS, I've got nothing I can do to help other than tell you like everyone else, CP is always here for you to vent.
So sorry to hear, Drummer. Some advice I can give you is to make peace (say all that needs to be said) earlier rather than later so you can spend the rest of your time loving your Dad and supporting your family. Sometimes you just run out of time and you miss your spots to make sure the people you love know that you mean it and hear you say it. Have a sense of humour about difficult things at the same time that you allow your father the dignity of grieving the losses he will experience along the way. Acceptance is the key to getting through this.
So sorry to hear, Drummer. Some advice I can give you is to make peace (say all that needs to be said) earlier rather than later so you can spend the rest of your time loving your Dad and supporting your family. Sometimes you just run out of time and you miss your spots to make sure the people you love know that you mean it and hear you say it. Have a sense of humour about difficult things at the same time that you allow your father the dignity of grieving the losses he will experience along the way. Acceptance is the key to getting through this.
Thank you.
I was going to suggest the same, but did not know how to word it properly. My father passed away in 2011 and I did not have time to do this. My mother is suffering from stage 4 lymphoma and I've learned my lesson, and spent two days just making peace and ensuring she is at peace.
I am very sorry, for what you are going through. It sucks.
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Again, thank you everyone for the replies. It helps me.
Today is the final day my parents and sister are in town visiting with my wife and myself. They flew out to Calgary for their annual trip 6 days ago.
Since then we've gone to Banff twice (including showing them Moraine Lake & Taka Falls for the first time). It's amazing seeing my Dad "hike" up to the overlook point at Moraine Lake thinking about what is about to happen to him.
In Calgary we've walked over the Peace Bridge after grabbing milkshakes at Peters Drive In, checked out the malls and some favourite restaurants.
I have a convertible yellow Saturn Sky which I hardly drive. I mounted my GoPro to the dash pointing it at us and took him for a ride around Calgary downtown. By the head statue in front of the Bow, through downtown, and 17th Ave. This was a few days ago when it was hot and sunny out.
We just chit chatted as I drove about this tower and that tower etc. I think this video I took will be priceless for me. A son takes his Dad who has ALS for a final drive through downtown Calgary in the convertible. Maybe one day I'll share the video on YouTube.
It's been a packed trip and will most likely be the last for him.
I've made peace with him because I know going forward my trips to Winnipeg will be tough.
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Sorry to hear man. ALS sucks monkey balls. My grandmother passed away from it and it was really difficult. The ALS society can provide a lot of support for your father and the family.
My Dad has ALS
