My dad was recently diagnosed with ALS & I don't know how to act

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eyecewe

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My dad was recently diagnosed with ALS last November (first stage), and I am devastated. I live in an apartment about 45 minutes away from my parents house, but I go to visit them at least 3x a month and call/text several times a week. We are very close. When my parents first told my brother and I, I didn’t know how to react so I just asked a lot of questions and did a lot of research. I was too stunned and still am. I can’t imagine what my dad is going through. It is very depressing to think that one day (and very soon) he will be gone. I don’t know how to feel about it, other than hopeless and depressed. Whenever I go over the house now, I don’t know how to act around him. I don’t want to treat him like a patient, but I don’t know how to act without breaking down and crying. I don’t want him to see my emotions because I don’t want him to hurt thinking that I’m hurting. He loves to paint and draw, and lately I’ve noticed that his hands are getting weaker so he can’t do it as much or as involved as before. This breaks my heart. I don’t know how to communicate to both my parents that I am really hurting without making them sad.

I’m not sure what I’m looking for here. I think I need advice on how to cope. There’s a lot of tips for caregivers, but I am looking for stories of hope and personal experiences with people who have a parent with ALS.
 

lgelb

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I'm sorry about your dad. I don't have a parent with ALS, but I have two with "time bomb" type conditions, and I watched my adult son, who moved in with us, with his dad in the years before my husband died of ALS.

The first thing to remember is that if your dad is in the early stages, the odds are that he'll be around for at least a couple of years, which isn't the same as "very soon." If you help him make the most of those years, whatever they are, you will always be glad you did.

I agree that once the initial shared crying is done, it would be better to cry before and after you go over to visit, not during. Your parents have a lot on their plate. For the same reason, I'm not sure I would look at it as wanting to communicate how much you are hurting. I would look to other people in your life, like your close friends, for that.

It's great that he has a pursuit he enjoys. With ingenuity and modern technology, he can continue. As he progresses through ALS, you may look for cuffs that hold brushes on his hand or wrist, different types of brushes or pencils that are easier to use that way, ways to bring his canvas or paper closer so he doesn't have to bend as much, including articulating mounts when he begins to use a wheelchair, begin thinking about apps that artists use to create digitally and try some out, get him alternative mice/input devices as he needs them (from a trackpad or trackball to mini-mice to chin/tongue mice to head mice to eye gaze)...

Well, there is more but you get the idea. It's not over. He's not over. How well you take that to heart and help him "live and work till he can't" is down to you. And you're right, you don't need to treat him like a patient. Treat him like your dad, who can greatly benefit from your ideas, work and support.

Best,
Laurie
 
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Puppy59

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I'm a Dad (first time poster) who has recently been diagnosed with slow progression ALS . I have a 23 year old daughter living in the house who hardly communicates with myself or my wife (she still appears to be going through that teenage thing where they don't speak to their parents), although I would say that we don't argue or anything like that. I thought that my diagnosis would have provoked some kind of reaction from her and bring us all closer together, but nothing so far.

It's hard for me to advise you what to do in your circumstances, as I don't know you or your father, but I would like for my daughter to just give me a hug, and say that she loves me, that's all!

Anyway, I hope that you can figure it out. Good luck!

Kind Regards
 

Nikki J

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I am FALS. I have lost my mother, sister,aunts and uncle in my lifetime Being on the other side now I wish I had been more open with my feelings earlier it is natural to want to protect your parent from your grief and you don’t want to be all doom and gloom for the duration as he should have lots of living to do.

however, this is horrible and unfair and tragic. I think it is ok to let him know you are devastated and talk about how much you love him You can cry together. And then go on to spend as much time as you can, make happy memories and say I love you a lot.

and yes he is the same person treat him like your dad. If appropriate ask his advice and for his help if there are ways he can do that. Feeling useless and sidelined is the worst!
 

KarenNWendyn

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As a person living with ALS, I’m aware that some people are uncomfortable around me because they don’t know what to say or how to act. I appreciate people spending time with me and talking about the sorts of things they talked about before I got ALS. I also don’t mind talking about my ALS (but maybe that’s just me), but I also feel it frees them up to ask questions.

I also like hanging out to watch movies and play games and maybe go for a trip to the park. From family, I always appreciate hugs, kisses, massages, and smiles. We sometimes put the family to work in the yard, taking things to the recycling center, shopping, and with other home projects we have put off.

I hope this gives you some ideas of things you can do for and with your dad.
 

KimT

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I've been on both sides of terminal illnesses. I was caregiver to my dad with end-stage COPD. I cried and he cried but we also laughed and made some good memories. I was also caregiver with my mom who died of colon cancer. She was more stiff upper lip and never shed a tear. She was easier but, looking back, I wish I had been more open with my feelings because maybe she was putting on a good front for me. I'll never know.

It isn't over for you and your dad. Focus on making good memories, helping him accommodate his disability, and you can never tell him you love him enough.

I don't have kids or any close relatives but I have good friends. I try not to talk about myself for fear I'll drive people away. I know that's not healthy but I'm making the point that, if your dad wants to talk, encourage him.

I'm so sorry you're going through this. Also make sure you get your mom out for some fun with friends, a facial, or a massage.
 

MarieLaure

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My dad has been living with als for a few years now. All I can say from my experience is enjoy every moment. He enjoys my telling him about work family and friends. We comment the news and recite poems and sing songs as we always did. In the beginning we pretended it was not there, which was feasible because it was slow progression. Now it’s about enjoying all moments we can. It involves bad nights and endless work to help but also a density of love I can not describe. He makes a pretty face for me and I make a pretty face for him but we know each other by heart so we know.
I work on keeping him in touch with friends.
you will find a way into your relationship I am
Sure.
yes it is terrible and yes there is love.
when you guys overcome the shock, trying to understand what he really wants will be soothing.
sending you all good feelings
 

Jimi

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Lots of good points already made. I'm 50 and have been living with Als symptoms for 7yrs and been diagnosed for 5yrs. My daughter is turning 12 in a few months. What I have really enjoyed is the way that she just treats me like her dad. She still tries to get away from doing her homework, jumps up on me and makes fun of my new protruding quad gut, and in general bugs me just like it would have been regardless. She is aware of the expected outcome, but also points out that there is always a chance of a cure. As others say, you have time to make memories. You can also really be a big help with him and accessibility. Smart home, digital art and computer access would be a great way to spend time with him and help him at the same time. Depending on how things progress and what your dad decides, he could be around for a long time
 

beauty4everyone

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For us, initially there was a time of sorrow, hugging and sobbing together over the inevitable. Things were better after we'd gotten used to the idea about possible, changes and "average" life expectancy. For once in my life, I focus on being above average! Other people are - I could be, too!

Such startling and frightening news may require a period of mourning. We took three months before we could discuss future plans regarding "end of life " and possible health choices. We didn't tell anyone or join an ALS Support group until after that.

I have two mantras: each morning, once the bedroom drapes are opened, I look outside and say, "Hello, World. Here I am!" That makes me feel good. It marks my place in the physical world. (However I am, I still "am". I'm still loved and cared for.)

The other saying is: "Not Today!" Am I going to lose use of my left (handed) arm? Although, it has begun, it still works some, so: Not Today!
Are other "bad things" going to happen? Probably - but, "NOT TODAY!", etc.

We ask our ALS Specialist, "Is there anything I qualify for that I can get now? If so, I get it. It keeps me ahead of things..

Talk to your mother. See if there's anything you can help with. Maybe help her make a list of everything that needs doing. Ask her if you can help write things down and assist getting them completed: recording financial info., type of accounts, Numbers & where located; funeral home, type of service, grave site, design the tombstone, obituary, etc.

If no one is ready to discuss such things, yet, just let her know you're there if and when she does.

I have ALS, wrote my own Obit. and the funeral service following the order of our church. Currently designing our joint monument. When family agrees, I'll have it made and set, so It'll be ready. When my father died, my sibling and I each purchased two cemetery plots for ourselves and spouse, should we marry.

Being useful and focused on practical requirements helps prevent dwelling on negative things. There is comfort in having completed things early. Then you can enjoy each others' company without that stress.

It's also an opportunity to ask questions of his and your mother's youth; how they met; why did they start dating; what you & brother were like when small, etc, etc. If they have old photos, using an archival, fine-tipped-pen, write on the picture's back,who they are of . After it's too late, children often regret not doing so!

Over the years, I've parted with over 20 family members and friends. It didn't
get any easier for me, though fear gave way to a more peaceful feeling after coming to know what to expect and say. Talking with your mother, brother or close family members can help.

I'm sorry for your father's illness. Hold fast. Rely on the experience of adults to help you and your brother as you support each other. There isn't any "perfect" way. Each family discovers what's best for them.
 

Tkthiede

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I’m sorry to hear about your father. I’m 61 and have been diagnosed for a little over a year. I have one son who lives at home and another who lives about 45 miles away. My youngest who lives at home is able to talk about my disease and sees as things progress and change. We are able to discuss and even laugh about it. My son who lives farther away doesn’t realize the changes because he doesn’t make the effort to see us very often. I think it’s a form of denial. If your dad is like me, I appreciate just seeing my son and my grandson. I’m not looking for anything more than just seeing them. FaceTime visits are wonderful too. You’ll relax into things with your dad soon.
I, like your father, draw as a hobby. I’ve had to make modifications because I can’t hang onto the pencil very long. Have your dad’s doctor give him an Occupational Therapy referral. They can help with adaptive devices and aids to help him continue with his art.
This is a great place to come for support. The people here are open, caring and sharing.
 

ChristineRK

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<quoted text removed>

Hello - I'm very sorry this is happening to you at a time when you could really need it. Please know you are not alone in this. It was almost as if as soon as I was diagnosed, my children pulled away from me. I haven't seen or heard from my son in over a year (and yes,I've tried many times on my end). All 3 of us had been extremely close as it was just them and myself. We supported each other every chance we could. Now all I want is a 'Mom - I love you.' and some time together. Like renting a movie, watching a basketball game. People keep telling me that everyone deals with things in different ways - but we were never the 'avoidance' type.

Anyway, please know you're not alone. I'm thinking your daughter feels tremendous guilt for not communicating much as it was and then you were all hit with this. Maybe you've tried this - but how about the next time she goes thru the room say 'I love you.' Be ready for no response, or maybe you'll get one, or maybe you'll get one several weeks later?

I know your wife loves you, I'm willing to bet your daughter does too but may be dealing with guilt (?) and she will get there --and we, out here, are giving you hugs and saying 'we love you'.

-Christine.
 
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Denis C

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I, too, am sorry for your dad's diagnosis and what he and your family will go through. When I heard of my diagnosis three years ago, I just started crying. I have a slow progression, thank God. As a dad with ALS, I wish my son, who is 23, would talk to me about the ALS and not avoid it. My wife too, seems to avoid the issue. You said you are hurting so much. They are too. Why do it alone? So you cry with your dad or mom. You don't have to cry every time you see them , but I personally don't think there is anything wrong in emotions. We share happy times with no problem, so why not the most difficult? My advice is to face your feelings, go on with "normal" life as you use too, and just ask your dad every time you see him if there is anything you can do for him, or anything he would like to do. Do the same with your mom too. And say "I love you" often...very often. I thought I was done for when I was diagnosed, but it has been three years and I can still get around. No matter the progression, make plans with your family to do things your dad would love to do. Even if he has a very good outlook on this, trust me, it is still on his mind. If you haven't done it yet, talk to him and your mom. Let him and her know they don't have to go it alone. Be there for each other. And if you cry, you cry. Don't ignore it, but at the same time don't dwell on it either. Take cues from your parents, especially your dad. Prayers for all of you!
 

karsey

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<quoted text removed>

Hello, my Dad lost his battle with ALS, after living with disease for just shy of 4 years, in October of 2015. It has been a hard journey but there has been good to come out of it. My Dad battled ALS like a warrior and his mantra was to "live life to its fullest" with the time allotted him. This permeated through our family and honestly, it uplifted our spirts and caused us to cherish each moment and draw closer together as a family unit. Don't be mistaken, we regularly had our hard moments but I encourage you, don't hide your emotions from your parents---I remember crying in my Dad's embrace over the course of the journey. It is okay to be open and vulnerable with them, it will open up opportunity to deal with the hard stuff, which will in turn, pull you closer together.

So in short, live life fully with your Dad while given the time. None of us know our last day, so cherishing each day. And communicate your emotions with your family. Tears are good.

I don't have all the magic answers but I am here for support if you need it. Chin up.
 
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Hellybelly

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<quoted text removed>
Hi hun sorry to hear about your dad my hubby has this vile disease also it been almost a year since he was diagnosed and it’s very fast acting but I still can’t get my head around this disease all I can say is say all tht you need to say do all the things you want to do with him as my hubby gone downhill fast and can no longer use his hand arms legs and his speech is going I wish we had done more together when he was first diagnosed but u seem to be caught up in the whole thing and organising stuff and now he to poorly to do anything . So make the most of him now hun . It Dosent mean your dad will go down hill fast I know people tht have had it for ten twenty years and are still going along ok .
 
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wmilo

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Hi, eyewece. As Jimi commented, lots of good points above. I'm a PALS living with my wife and adult daughter. Although dealing with a very difficult situation, your dad is still the same person he was before dx. You said that you are close with your family, which is great! I imagine that your dad mainly wants to continue to have a relationship with you. It might look different from before, but hanging out and talking over coffee or your favorite beverage, watching a movie, or whatever you might have done previously will foster that relationship and maybe give a sense of normalcy that you will both appreciate.
Best,
Bill
 
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