Old 08-27-2015, 11:38 PM #1 (permalink)
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Default Father newly diagnosed with bulbar ALS

Hi everyone,
I have recently found out my father has ALS. He's had it for about a year and a half now but they were treating him for something else that wasn't terminal. I live in Halifax and he lives in Ontario so I was unaware of any changes happening with him except for his slurred speech which I attributed to this other disease he was diagnosed with. Then a couple months ago I was informed that the treatments weren't working and the doctors thought it was ALS. I was devastated at the thought but remained hopeful that it wasn't that.
Then about a month ago I am informed by my sister that he does in fact have ALS and he has lost alot of weight.

So I booked a flight down for as soon as I could and I am here now with him. I was feeling like I had already lost my father before I came here so I've mostly been feeling relieved that he is still here and in good spirits, but now the weight of it is catching up to me. His neck has lost strength so his head hamgs when he walks sometimes and he can barely speak at times. Today we went to get a feeding tube for him so it will be ready for when he needs it. My parents are acting like they always have been, so this almost seemed normal. But the fact that my dad could lose his ability to speak and move around any time is so heartbreaking to me... Alot of people I've told don't know how to react to it and I feel like I'm being a burden by being sad about it. I know I should just enjoy his company while I can and that's easy when I'm here with him, but I'm scared when I go back to Halifax that I won't know how to deal with it... I don't want to miss the time he has left but I know he wouldn't want me to give up the life I've made for myself either... I just thought we had so much more time. It really hurts to see him this way..
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Old 08-27-2015, 11:53 PM #2 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Sorry to welcome you here.

All your feelings are valid, let me start there.

You are still in shock - and you are already grieving, so you can expect to feel a lot of stuff over the next weeks. Don't be surprised if your emotions bounce around, but try not to react or make decisions while that is happening. We do come to a place of understanding and even acceptance after some time, but we continue grieving with each loss they suffer.

I would suggest you now have people to talk to which is great, so use this place. Then give yourself some time to come to terms with the whole situation. You can still make lots of decisions like visiting regularly, moving closer, daily skype catch ups with them or a bunch of other things that may work to help you support them and be involved. Don't try to work them all out today, just spend your time with them and let yourself adjust.
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Old 08-28-2015, 07:16 AM #3 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Sayen, don't know if this will be any comfort to you, but our daughter (who lives several hours away) said she felt she got to know her dad better in his 2+ years with ALS than in all the years before because each visit was focused on that. So try to just enjoy today with him, and when he is up to talking, ask all those things you might wish you knew someday. Love is a powerful tool. Hugs to you all. Donna
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Old 08-28-2015, 08:10 PM #4 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Saven, you’re really smart. The words you wrote moved me.

Obviously, we here on this forum have been dealing with tragic loss daily for years, and you’re right to say “A lot of people I've told don't know how to react to it.” Don’t worry about most people. They don’t understand the unusual situation you’re in. You’ll climb this mountain pretty much on your own strength.

You’re absolutely right that “he wouldn't want me to give up the life I've made for myself.” Part of a man’s duty, in my own “old man’s way of thinking,” is to produce an independent son. That’s why father-son relationships are unique. Personally, I feel rewarded and satisfied just knowing that my son is a good man, independent of me, seeking his own fortune.

“I should just enjoy his company while I can.” That’s right. He has his wife to care for him and understand him better than anyone else in the world can. He chose his wife out of all the people in the world, so that’s a very special relationship.

It’s important now for you to know that his wife is entering into a very demanding role of 24/7 caregiving for a person who will eventually be unable to feed himself, scratch an itch, or go to the bathroom on his own. Caregivers don’t sleep much. So find ways to help her with anything. Assist her with everything. Unless your dad chooses otherwise, cut the grass, do the laundry, clean the dishes. Help her have time to be with him.

One thing to understand about ALS: ALS takes away choices. When you have ALS, eventually you can’t even choose when to breathe. I personally recommend that you should let him have his choices. So actively support his decisions, even if his decisions are widely believed to be wrong. He’s a fully grown independent adult facing his last fight. Let him fight it his way. Your dad will do his best to keep it together and face the Reaper on his own terms.

“I just thought we had so much more time.” That’s probably the most wise and important thing to understand about life. It’s a gift to be enjoyed fully and shared widely before it slips away quickly.

I'm prattling and I'm meddling and my computer screen is fogging up. You have little time to be with him. Get off the computer.
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Old 08-29-2015, 01:41 AM #5 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Thank you all for your replies, it is comforting to talk to others who are familiar with this situation. My father's attitude towards this has been amazing and I've been trying to replicate it. His point of view is "why get depressed about it and waste the time I have left?". I've been appreciating the time we've been spending together but it is also hard seeing the changes in him.. We have always been close and so far other than my step mom, I'm the only family member who has made an effort to spend time with him since the diagnosis.

He's expresses to me that his biggest fear is his loss of Independence. He loves my step mom and she will be there for him til the end but she often treats him like a child and is very controlling naturally which is frightening for him when he loses his ability to exert his own will. This makes me sad for him.. He doesn't always do things that the doctors say he should do and that's concerning for us all because we want what's best for his health, but I recognize that it should be up to him to make his own choices. She doesn't seem to realize this as she scolded him for not drinking all of his boosts for the day. This and the lack of presence of my older sister and the rest of his family makes me feel like I should step in somehow... But maybe it's wise to wait until it is clear he needs me. I am the youngest so he still feels the need to protect me, so I feel like it would be discouraging for him to feel like the tables had already turned.

They say he might not lose his mobility as his strength is really good for this stage of the disease and his breathing capacity is up 10% so we are still hopeful about the amount of time he has. But I'm still cautious of being too hopeful as I may rely on that too much instead of accepting the reality of the disease. Do you ever get used to the idea?
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Old 08-29-2015, 01:50 AM #6 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Encourage your step mum to join here.

We can help her work through the hard job of being a CALS.

It's so hard to watch the one you love make bad decisions and I had to learn to allow my husband to make poor decisions as it was the only control he had. These decisions probably hastened his progression, but he was a rapid progression anyway. Had he lived a couple of months longer in more misery because I took control, well would that have been any better for him? No one can answer this, but I feel that I did all I could while letting him have as much control as he could.

Calories are so important in huge amounts for a PALS. I watched my husband starve himself, even with a PEG in place. But arguing with him every day to get the feeds down him just did not sit well with me. So I offered feeds and he accepted or refused. I accepted that he faded away and was only around 48 kg at the end.

It may not work well for you to try and tell her these things. Joining here she could have lots of support, information and opinions to help her make her own way through. She must be grieving hard and terrified too.

That's something great you could do for both of them. Maybe your father would even like to join too.
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Old 08-30-2015, 08:25 AM #7 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Sayen, you've received some wonderful words of support and advise here. Let me just add a little about my situation. My stepdaughters and I have become much closer since my husband's diagnosis-especially the daughter with whom things have been the most difficult over the past 10 years. They all live several hours away, and she has decided that she will come at least one weekend a month to help out in any way she can (in addition to any time we call and ask). Your stepmom needs help, and I doubt that anyone loves your dad more than the two of you, so this is a natural bonding opportunity.

Relationships can also be strained by this journey. I started out by over protecting my husband. I saw it as my job to care for him and keep him as healthy as possible as long as possible. I now realize that this is his journey, and if he choses to shorten it or even make things more miserable at some point, that is a tradeoff for living as he choses now. That acceptance does not come easily to a loving spouse or partner. This forum helped me see what he could not tell me. Do encourage your stepmother to join us.You may be worried about your own privacy, but at some point you will be able to PM us, which you can do if you'd like to blow off some steam or ask questions without upsetting her.

One final thought. The biggest possibility I see for conflict is over making end of life decisions for my husband. It is my husband's wish that I make those decisions, and I will do it The daughter who is helping the most right now is not happy with that. She wants to be part of the decision making process. She also wants to be my alternate in the event that something happens to me. I think my husband will chose his brother or sister in law. He needs to get this done, but I think he's hesitant to hurt her--not a good situation. I have assured her that I always keep her informed and involved, but that the final decisions, if he cannot make them, will be mine. I know his mind best and I am the one caring for him 24/7. It is also not something either of us wants her to live with in the future.

Ironically, I started out being the controlling, overprotective wife, snapping at our kids when they suggested I back off. I now find myself explaining to other people why we can't impose our wishes, even when they are for his good, on my husband. Again, it took this forum to help me get there. Our children could NOT have lead me to this.

As for getting used to the idea. Well, acceptance is possible, but we all still have our periods of grieving.
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Old 08-30-2015, 03:01 PM #8 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Becky,
I don't want to hijack Sayen's thread, but I would really press for the health care PoA/advance directive to get done, especially since, as you pointed out, disputes could arise at the worst possible time.

As for hurting his daughter, it could happen when she's not around, make the final decision on the alternate, don't ask, don't tell. If she asks again, show her the documents while he can still look her in the eyes and say, this is what I think is best and has nothing to do with how much I love you and appreciate all your help. And take questions.

Or, depending on their relationship, needn't wait for her to ask, but regardless of the process, I would not let her hold it up. Life is too unpredictable, with or without ALS.

--Laurie
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Old 08-30-2015, 03:37 PM #9 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Becky, I agree with all that Laurie said. She speaks from long experience and good training. Don't delay settling the issue with the POA and Advanced Directives. Give the PALS his wishes clearly in writing and known to all, up front and as early as possible.

My own view is that an adult child and a wife have very different relationships to the dad/husband. In my own crass way of putting it, we chose our wives (somewhat) carefully, but our kids were total accidents. A wife of long-standing always knows the husband's heart better than a child would. My kids are special to me, but they didn't get to see all the heart of me that I showed my wife. So I trust I can put the POA burden on my wife, but the child should not carry that burden. That's just me. Your PALS may differ.

SAVEN, some people "get used to the idea" but some just can't. I adjusted instantly, but I have seen a few CALS who just stayed devastated and confused to the very end. Very sad. Everything you've written however, tells me you'll do well.

Should you rely on hope for longevity or accept the reality? Personally, I think it's more useful for all concerned if the CALS thinks just a tad differently than that. Certainly, we must accept the reality in order to accomplish our two goals 1) plan for and provide the best comfort for our PALS and 2) plan for and prepare the best situation for the survivors.

As for hope, I personally think we must have hope--but not for longevity. We must hope that we can provide adequately for our PALS and survivors. In fact, I'd say we absolutely must have faith in ourselves. We can do this. It's been done before. ALS brings out the best in a CALS and shows us the strength and resilience we never knew we had.

--Mike
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Old 08-30-2015, 04:56 PM #10 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Thank you Mike and Laurie. I do have a medical POA and advanced directive that he did 20 years ago in Texas. I asked about that and was assured at both the VA and the ALS Clinic that if it didn't work, in NC the wife automatically has say in medical issues in now other provisions have been made. I should have done it already, but as soon as we get back from this trip to Colorado I'm making and appointment with a lawyer. I contacted the law office in Texas that created our trust and all other assoicated documents years ago, and they've directed me to someone in NC that is familiar with what they did and can update/advise. The first attorney I saw was pretty much worthless. Hopefully that meeting will get him to commit to an alternate in case something happens to me. To be fair, I haven't named an alternate to him and that's even worse. Mike, I agree about the differnce between children and spouses. I know that our four adult chidren have conferred and decided amongst themselves who should have the honor, but I'm also leaning towards someone of my own generation. I find it humorous that our kids are already having teleconferences to decide what to do about the parents--I'm only 56. LOL--they are going to wear themselves out if they start this early!
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Old 09-25-2015, 02:20 AM #11 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Dear Sayen,

I am so sorry to hear of your Father's diagnosis. My heart goes out to you for what you are going through, you being the loving son that you are.

I know that your Father is so proud of the man you have become. I know that he is so touched by your true concern and your love.

I was officially diagnosed with ALS in August 2015. I have predominantly bulbar symptoms at this time. There are certain things about your Father's condition that I can definitely relate to.

I am a Mom, with one "child". He has grown up to be such a remarkable young man. He has always been a loving, caring son to me.

I just wanted to introduce myself to you. I don't know if there is anything I may ever be able to do to help you in some way.

Your Father has already received one of the greatest blessings there is: YOU, as his son.

I will be thinking of you and your Father.

Most Sincerely,
Laura.
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Old 09-28-2015, 11:11 AM #12 (permalink)
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Default Re: Father newly diagnosed with bulbar ALS

Quote:
Originally Posted by Sayen View Post
Thank you all for your replies, it is comforting to talk to others who are familiar with this situation. My father's attitude towards this has been amazing and I've been trying to replicate it. His point of view is "why get depressed about it and waste the time I have left?". I've been appreciating the time we've been spending together but it is also hard seeing the changes in him.. We have always been close and so far other than my step mom, I'm the only family member who has made an effort to spend time with him since the diagnosis.
Sayen, from what I've read from you and your dear dad, he must be so proud of you. I think he's done a fantastic job raising you right, and it sounds to me that he is reaping the benefits of that upbringing, particularly now.

Donna is right about the father/child bond, my dad and I have become very close since I first developed symptoms. I'm so glad for you, that you are able to spend time with him, I'm just sad for the reason.
Just don't forget, it's his brain that you love, not his fingers and toes and what they can or can't do.

God bless you and your dad, Janelle x
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