Katie C
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  • Katie, I know that you have been on this forum for a long time and a big help to us on the forum. I lost my husband December 27th and I have this big hole in my heart and I'm so lonesome for him. Do you ever get over this emptiness? I know he is in a better place but I wasn't ready to let him go and all I think of is the time he was sick.
    Katie C,

    I saw your post to another "past caregiver". You said that you had nightmares. I wanted to ask you about this. Mom has been gone only six days. I have had nightmares almost nightly. Most mornings I wake and I am okay: The nightmare was about trying to find or ask someone to help out with caring for her while I run and do something and they don't show. Or someone says they will, but then they don't really take care of her correctly. Last night I had such a horrible nightmare about her I can't even say what it was. I didn't know my mind could come up with something so horrific. I woke scared and horrified.
    How long did they go on? How did you deal with it? I am so afraid of having another one of those I don't want to go to sleep tonight.

    Hi Katie,

    You seem to have such a good handle on all this I was hoping I could ask you for some advice. My mom works 3 days a week and my sister and I are caring for my dad on the other days.My mom is just about to lose it.He seems to respond better to the care from me and my sister but we cannot continue to be there 5-6 days a week.We both have small children and I teach at a university so when school starts back in August we are going to be in a bad position if we don't make some hard decisions.SO, we have been looking into nursing homes.I broached the subject with my mom this weekend and we didn't really talk it about it much further than introducing it.My question to you is about being in the position as a spouse with an ALS husband.Do you have any advice on how my sister and I can make this transition any better or easier on my mom?We just honestly don't know what to say anymore.Any advice is appreciated.

    Hello Katie,
    I came across your post saying your husband had ALS/FTD ... and the variant "flailing arm syndrome" ... My husband was diagnosed with ALS and later with FTD four/five years ago. Both are slow progressing ... and just this week the doctor for the first time mentioned "flailing arm" which i had never heard of. He said my husband is an "odd duck" because the combination of ALs and FTD does not usually occur in people with that variant of ALS. And so, as you can imagine, i was very interested to find your post. (it actually came up on the web as i researched this new term). Are you still there? Can we talk/email? I am sorry to see you are "missing your sweetie every day." It looks like you are a very helpful person here on the forum. I haven't been here much, as I have found more of what i need on the AFTD forum recently. Loralie
    not sure if you still check in these days but my husband sounds like your late husband..no peg,vent or meds..in a recliner,paralysed,cant speak and is waiting to die..I have questions about breathing issues
    Katie, I just wanted to tellyou that I really think you do so much good here on the forum. You are a fount of knowledge and so kind to the new cals who are dealing with FTD.
    Hello! Thank you for responding to my Exercise question. My reply was sent to moderation, but I'm sure it will show sooner than later. Short story is, I hadn't thought about emailing Dr North, but of course that is exactly what I should do. A note about him, though, and I thought you might like to know, is he is struggling with his father, who is his final stages of Cancer. I feel so badly for him. Our last "appointment" was a phone one, and I can tell that, like us, he is trying to be all things to all people. I pray for a quick and comfortable conclusion, and peace for his family.

    Just thought you'd like to know.

    Thank you, again, for your time. Shelly.
    Seems to come in waves, doesn't it? Sometimes I just have to YELL at myself! Very difficult journey. Hang in there. I hope you can feel better.
    Hi Katie -

    I hate to bother you, but we just received our Social Security statement of acceptance with my husband's monthly amount and arrearage information. With it is information about MediCare, and they informed him that they have deducted payment for it. It says that we can decline MediCare. I'm running this by you because, like you, we have the sameish diagnosis, the sameish Kaiser Insurance, and we live in the sameish area.

    Can you tell me why we would want to accept MediCare coverage? My inclination is to decline it.

    Any help or information you care to share would be greatly appreciated.

    Thanks, in advance........your friend,

    Hi Katie,
    Clive just bought a new chess set, as part of an ebay spending spree!
    He can play well, beaten me a few times (and me him). He still has odd moments and wierd behaviour on times. I'm still waiting to see the consultant to put forward my fears.
    If he has some ftd going on, would his ability to think/play chess be affected do you think?
    Just looking for rays of sunshine...
    Thank you, Katie. We have Coupe and Max and they are great. We also had a girl, Zora, but she decided to venture out on her own and we are just hoping she found a loving family to be part of. :) It blows being on the verge of losing my remaining parent but I had a wonderful 30+ years with her. My heart breaks the most for my children and how much I know they will miss out on not having my parents in their lives. We will do everything to keep their memory alive!

    Hi Katy C, My apology goes to you, as I fellt I had offended you with my suggestion of Hero's..as you said you HATE that word hero, that is why I explained what I meant by it. I am so sorry please accept my apology. {{Hugs}}
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