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ARCG

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Just wanted to post some good news. Foot is healing and I should be out of boot in two weeks! Can't wait till back in sneakers. It has been very difficult, but used a knee scooter with basket to get around house. Taking husband to dentist and arranging coverage so I could go to ortho had lots of hiccups and false starts, but made it through. Now looking at getting some help in one afternoon a week so I can run errands, etc. this summer, Quite a process and frustrating but I now just expect things to never go smoothly. Will feel lucky if I find someone at all.

Annie
 

lgelb

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Annie,
Glad to hear you are on the mend!
If you have difficulty finding someone, post back -- we have a lot of combined ideas.

Best,
Laurie
 

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So glad your foot is healing up and you have a little help starting :)
 

ARCG

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Looks like I may be getting some help, at least one afternoon a week, hopefully two, fingers crossed, my DH isn't really on board with this, but I don't know how to do it 24/7 without a little help.

Once again, I have well intentioned friends telling me I need to take care of myself, but even with help, there is so much to manage and no one else can/will do that part of it, as you well know. It is so difficult for people to understand when someone can't do anything for themselves, how time consuming it is to do it all for them. When I get a rare spare moment, all I want to do is rest. Friends tell me I need to get out more and they miss the 'old' me, but I am so exhausted, that faking being happy is just too much. Recently, when someone complained I was turning down invitations, I just burst into tears. Are they kidding? Really? I have a broken foot! Not to mention I would have to arrange coverage for my pals.
Someone actually dropped off some DVDs of a television show I could 'binge watch'. The last thing I want to do is watch more television as it is on a lot already for my husband, and even if I did, who has time to binge watch tv? I know they mean well, but I don't need the added guilt that I am handling this wrong. What do they think I am doing all day? I have been very proactive so far and one of the reps from an agencies who visited confirmed that. This might be controversial, but I think the hi profile pals we see in the media, who have a lot of help give a false impression of what this disease is really like for the rest of us. One friend told me of someone they know who had a private plane and was living life to the fullest with ALS, like its glamorous or something, sorry for the rant, feeling bitter today, I guess.
 

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Annie, I understand completely and I know many others here do. Bingeing TV, going out for a carefree evening and talking about "nothing" were way outside my CALS experience and it's undeniable that the P/CALS that get the most publicity are pretty to look at and to listen to. That's the nature of the slants the media wants to take. ALSA hasn't helped, IMHO. But I digress.

Just do what's best for you and your PALS. True friends will stay with you in one form or another. You've earned the right not to fly or salute false flags.

Best,
Laurie
 

wishmobbing

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Rant away! We get you.
It's good to know that friends care for you and want you to get out and it shouldn't be your worry to teach them how they can help. If you seriously try to convey what caring means and what really might help you can get many onboard and some will never get it.

You could give them a timeline of every little move you go through in the morning for example. Just to get the scale of things. If they want to invite you for dinner they could bring the food, do all a host does at your place and clean up after including bringing out the thrash. You might still pop out at times to look after your PALS but a good meal in the belly and some company are good. I don't know your situation so feel free to set me straight.
Rant away! We get you.
It's good to know that friends care for you and want you to get out and it shouldn't be your worry to teach them how they can help. If you seriously try to convey what caring means and what really might help you can get many onboard and some will never get it.
You could give them a timeline of every little move you go through in the morning for example. Just to get the scale of things. If they want to invite you for dinner they could bring the food, do all the host does at your place and clean up after including bringing out the thrash.

Good luck in getting help at least two times a week and get well soon!
 

ARCG

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Do you all find you can't sleep? I know I need to sleep but find After I go through the nighttime routine of getting my husband to bed, I m wide awake. It's odd because I so look forward to getting some sleep. Then I m dragging when it's time to get him up. I try sleepy time tea but it doesn't help. I think it's the reality of seeing him deteriorating, if hits me after I have brushed his teeth, done the toilet thing, transferred him, ventilation, etc. He drops off to sleep immediately and I lay awake trying to read of do something to distract from how heartbreaking this is.
 

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That is normal -- apart from the worries and sadness, your sleep cycles are disrupted when you no longer control the times you go to sleep, wake up in the middle, get up, etc.

The more consistent you can be with those times, it may be a little easier.

Best,
Laurie
 

affected

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yep I was the same.

It's not good as you are more tired the next day, but I was so wired, there is so much to continually process! I think that the brain can really take off once you are finally alone at the end of the day when you have been so busy 'doing'. hugs
 

wishmobbing

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Same here, but I also noticed that I like being awake for an hour or so after my PALS falls asleep. It's the only time nobody wants something, there's nothing I should do, it's relaxing. I always liked being awake at night. The being drained part the next morning is what builds pressure. If it wasn't for that...
 

Jrzygrl

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I'm the same. Sometimes I am so tired, I try laying down before my PALS is ready to go to bed. If I do fall asleep, and then he decides he wants to go to bed, once I get done the night time routine, I am awake for hours.
 

wishmobbing

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Once I had to wait for him to finish in the bathroom very late. I was lying on my back watching shows on my phone, fell asleep and got hit awake by the phone crashing in my face.
 

ARCG

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Yikes, that must have been a rude awakening! Ya'lls experience sound just like mine, I know I need to sleep but it is the only time I am not in demand, so to speak, and I start processing all the things I am doing and need to do the next day. I think I will stop fighting it, maybe if I drop off later I won't wake up in the middle of the night and lie awake until time to start all over again. Thanks for the reassurance. no one really understands this unless they have done it.
 

KateEmerson

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I was fortunate that my husband had always liked to go to bed early. The first thing I would do after he was settled is spend around an half an hour thinking about what we needed for the new or next stage of loss and what I needed to do the next day towards that end. I would write out a schedule for the next day and a list of the to do items. I would then, to the best of my ability , spend an hour or more relaxing knowing I had done all I could for that day. I would then go to bed. I found this really helped reduce my mind racing once I got in bed. Of course I never got the hours of sleep I needed but over all I slept more soundly.
 

ARCG

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I was able to get out and take a short walk today for the first time after getting my boot off. A friend stayed with my husband. The process of getting care is turning into a nightmare. I hope it will work out in the end, at least a few hours, but all the red tape is amazingly frustrating. We have people actually faxing paperwork to each other and messing up phone numbers. Haven't htey ever heard of attaching files to an email? I feel like I am in a time warp. Who faxes anymore? Have intervened twice, suggesting the just email the files even snail mail would be faster. My husband doesn't want to go up to clinic anymore. The last time we were ther, we waited 5 hours to see the doctor and then he kept getting pulled away from us. My husband was exhausted when we left. He doesn't see the point, as when he gets tired he progresses quicker and doesn't recover. Are you all still going to clinic? My husband can't use his hands or walk, is on trilogy at night and his speech is not good. He doesn't see what they can do to help him. They just do exhausting tests and tell him he is worse.
 
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