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starente15

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Hi everyone. I feel like this sounds like a selfish question, but how does a caregiver/family member cope with what is happening? My dad was diagnosed 10/2014 and my parents and brother live in North Carolina. I fly down every 6-8 weeks to visit/go to clinics.

My moods usually seem worse after returning because it's like getting shocked all over again with the situation. I'm finding that I have anxiety/depression now most of the time. It's hard to focus on things and I'm mentally exhausted.

I do get counseling for myself and go to a monthly ALS support group. I know these feelings are here to stay but I'm just wondering how others cope :confused:
 

gooseberry

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Anti depressants! It is a very difficult thing and its not a set period of time. Anti depressants let you function, feel, and be happy, sleep too. Seeing someone you love go thru this is so hard, you need to help yourself if you want to help them.
 

cheerleader

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Think almost everyone here is on anti depressants! And what you are feeling is not selfish. We ALL want life to be good and easy and never change!
Star, everyone copes differently. For me, I focused on today and the good memories we had together. We talked a lot about our lives together, and all our blessings. I know it's hard- but you WILL get to the point where you will want your dad to be free of this suffering and it's indignities- and will be ready to let him fly away. I still cry regularly- but it's for me! For him, I celebrate that he is whole again, and envision him doing all the things he loved! Hugs to you. Donna
 

Barbie

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because you see him every 6-8 weeks, it is probably more shocking when you do see him, because the changes are so apparent and if you were to be with him daily the sorta "sneak up" on you. there is really not much else you can do other than take meds, see a counselor and be kind to yourself. it is what it is...
 

starente15

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Thanks everyone. I take ADs. Went to acupuncture tonight and had them stick my anxiety and depression points. I feel a little calmer now. I often wish a heart attack would take him then feel guilty.i never could have imagined this hell if I had tried. I can't imagine how I will ever deal when I get the call that it's the end.
 

cheerleader

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Star, as you've probably read, our PALS usually die peacefully. You will deal with it like you've dealt with this disease- with love, strength and courage. It is an end that most PALS are ready for- giving them freedom again.
 

affected

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Star, we all cope differently and the same. Paradox, that always summed it up for me!

We are torn between so many poles all the time.

I think that my key to coping was accepting the terminal nature of the disease and focusing on comfort.

It wasn't easy and for me accepting was something I had to continually do and redo. It's total crap, it's hideous, it's beyond imagining, but IIWII.

I agree that seeing the change every 6-8 weeks has it's own shock value, and you should not be surprised that you go through a new grief after every visit. Allow yourself to feel all the anger, fear, sorrow and everything that assails you and let it out. I think you may need at least a full day off to yourself when you return from each visit and maybe allow yourself that day of grieving and grounding yourself again. I try to imagine how it must feel totally surreal to return from these visits and walk into your regular life. I know for me the outside world seemed surreal and a year after losing Chris it still does sometimes!

Nothing selfish in your question, not the least little bit.

Oh, and throw guilt out the window fast any time it makes a peep.
 

tripete

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Star, I want to say that as a PALS our caregivers are often to "unselfish". You give up so much for us and because of this b1tch we are putting you through so much. I often wish my time would be done so that my loved ones could just move on and get over all this stuff. I feel like I am the selfish one for requiring so much from my CALS.

You need to do what is best for you. I am CERTAIN that your dad knows you love him.

peter
 

Brit007

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Hi Star... I agree with everyone else about being kind to yourself! Glad to hear that you are support with AD's as I am too! My husband was diagnosed in Nov 2011 & this is not an 'easy ' journey for anyone to be on. I request that you create wonderful memories with your father.. If he is able to get out concerts, movies, theatre, a weekend trip, low key surrounded by what makes you all happy.

I have created what I call our monthly future to LIVE Into.. Having my husband look forward to events as I have shared above.. Loads of pictures, I have recorded my husband so I will always be able to hear his voice..my us and has so many funny stories of different happy times in his 50 years of living & he has typed them out & I read them out loud for us & other members of our families & friends...

I know we all fear the end of life! How it will happen & pray our loved ones feel no to little pain.. I have the same prayer too.. That is because I love my husband so much.

I also believe in my heart that creating a future to live into has encouraged my husband to fight this as much as possible. To concentrate on what he can do vs what he cannot do. Be in the moment, as much as humanly possible. To allow him & myself to be any way we are & know there is nothing wrong & embrace our humanity!

I hope this communication makes a difference for you & your family.

Sending you all love
 

Loverly

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HI Star,
Greetings from Orange county!
I have upped my SSRI to double the dose and I have Xanax on hand for break through anxiety. I have diagnosed depression, so you may not need that much intervention.
I am one of the outspoken marijuana users on the board (and everywhere) and I feel like it helps me.
Yesterday was a bad one for me. I was really heading down the rabbit hole, so after work I had a few puffs and my worries melted away.
Not all experiences are the same, but it does help me. I also have migraine, so I would be using anyway, fyi.

Sorry you're here, but hoping we can help with support.
<3
jennifer
 

Loverly

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I am going to be in SD all weekend if you want to grab a coffee and talk!
Shoot me a text! 949-500-9633
 

Nuts

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Star, when you go back to California, do you return to your life? Do you do anything for pleasure? I hope so. You love your father and are a wonderful daughter, but your dad wouldn't want you to spend your days away worrying about what you cannot change. This sounds cold, but it's not. It's a life saver. It's incredible that you return to NC as often as you do, but when you can't be with your folks you need some positive experiences away from ALS in order to keep your sanity. I think it might be even harder for you since you are so far away...perhaps you worry more because you don't see them every day.

If all else fails, more ADs!
 

lgelb

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OK, I respect that many of you feel ADs are helping, but doubling dosages, adding benzos and throwing weed on top (for Jennifer + anyone else who does any of the above) could easily at some point impair your caregiving, if not your own health. Esp. for those doing lifts, transfers and wheelchairs, please be safe -- you can't always predict the point at which lack of sleep, optimal nutrition and emotions with their own chemistry, plays into what you think is "no problem" and there is one.

Star, if your AD isn't keeping you from feeling "anxiety and depression most of the time," it might be time to reconsider which one(s) you're on. Some can make you worse before you find the one that makes you better. Your dad needs you. That's not guilt, that's the reality that no drug trumps.

And as far as fear of getting "the call," reflect that many reading are the ones that are going to make the call because they're living the hell 24/7. I have to disagree that continuously hoping-for-a-heart attack feelings are just "here to stay." We support the full range of feelings P/CALS have here, but there's feelings and there's the ability to help the person who really -- _really_ needs it. When one interferes with the other, it's time for a change, and I don't mean popping more of the same pills.

This isn't to minimize the horror, Star, but this is a journey you want to be present for -- there's no redo -- and if you're dreading each visit, you're really not all there. Possibly there is something you want to do or say, for your mom and dad, that you have not. Or you may be pushing away your real feelings or memories in favor of something less real. This is all there is. Make the best of it, for yourself (you will remember) and your parents.

So the short answer to your original question is, many of us cope[d]by transcending the whole question of "selfishness" and immersing ourselves in (as Tillie so aptly termed it) the surreal. The more you analyze it and dissect it while it's happening, the less likely that you have really done that. You might ask, wouldn't being in it all the way be even worse? Well, you don't seem very happy with the way things are. Don't stress-test your resolve with drive-bys, so to speak. Figure out what you haven't done, what hasn't been said, and make it happen.
 

Loverly

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I resent the implication that I am operating around my PAL in an impaired state.

OP asked how others cope. I expressed my experience.

My dr prescribes my medicines, INCLUDING the marijuana. Far from impairing my caregiving, it keeps me from suicidal ideation and powerful painkillers.

You presume too much.
 

starente15

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Thanks again everyone. I always appreciate your concern, feedback, suggestions and support.

I learned quickly that it was a bad idea to go back to work the next day after returning from a visit so I take the first day off to regroup myself. I try to do a lot of positive things for myself, i.e., visit with friends, meditate, yoga, work out but some days nothing seems to work. He has a clinic visit today and it's the first I will not be at. I don't think a lot has changed in 3 months (at least I'm hoping) and I just saw him 3 weeks ago. I think a lot of my anxiety the past few weeks was returning from a visit and knowing the Dr. appointment was coming up. I go back next month so until then, I keep riding the roller coaster.
 
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