Recent content by Katie C

  1. Katie C

    Suggestions?

    It sounds like you have a clear diagnosis already of ALS/FTD. Sometimes that is half the battle. Your biggest question right now seems to be the food stealing. This is NOT uncommon. My son and I thought we had made the house safe for my husband. We had locks on all the cabinets and believed...
  2. Katie C

    A Blessing?

    Tillie and I travelled very similar paths. It was like living with a 6 foot tall toddler who was in a perpetually bad mood. He had no capacity to understand what was happening to him or why, but he KNEW he was not functioning properly. And yes... that blank stare. It's been almost four years...
  3. Katie C

    article I found helpful

    Good article Tillie. We were very lucky to have had Dr Loemen-Hoerth actually diagnose Glen's FTD! I think the last paragraph of the article really says it all... knowing the behaviors are part of this particular variant of the disease is a game changer! I was much more patient once I knew the...
  4. Katie C

    time for nursing home

    If he is becoming paranoid, you need to find a neurologist or neuropsychiatrist to get him evaluated for FTD asap! Until the evaluation, document every "weird" or "paranoid" behavior in a notebook. There are still to many doctors who assume there is no cognitive involvement and haven't...
  5. Katie C

    Dad's speech getting worse

    "It is what it is" is your best friend. Remember that because he has cognitive involvement, not only is his personality different, but he also may well have lost (or be losing) "executive function" or what we think of as cause and effect. So those times when it feels like he's really just...
  6. Katie C

    ALS Patient becoming difficult

    Indy.. besides the suggestions already given, insist her doctor do an FTD evaluation, or put you in touch with a neurologist or psychiatrist who is qualified to do so. If FTD is found, it could be that finding the right combination of psychiatric meds will help your SIL in coping.
  7. Katie C

    Ruby, I'm so sorry. Time is your friend, though it might not feel that way right now. Little...

    Ruby, I'm so sorry. Time is your friend, though it might not feel that way right now. Little bits at a time, you'll develop your new reality. I'm still working on mine, but it is happening. I saw a grief counsellor for a long time.. almost 2 years. Now I'm working on me (including trying...
  8. Katie C

    Question...

    You NEVER have to put up with being dismissed or disregarded. If that is what's happening, you need to find other providers. Because my fears and observations were dismissed, it took YEARS for us to get a diagnosis... Had he been on the right medications soon enough, we could have spent at...
  9. Katie C

    Night Time with ALS

    If he's restless to the point that he's out wandering malls in the middle of the night, I would suggest you start keeping a behavior notebook... when does this happen, are there other behavior changes that you've noticed, when do they happen? Do there seem to be triggers. If it seems to be...
  10. Katie C

    Palliative Care

    Tillie... that was a great article. There was another one listed on the page: "The anti bucket list" Also excellent. We did go on hospice both in Glen's case and with my mom (lung cancer) that we were able to develop relationships with our care teams and when "the time" did come, it was...
  11. Katie C

    Palliative Care

    They actually came out to the house for us, even for the intake interviews. I agree with Barbie about having a list of behaviors... don't worry whether you think the are "issues" or just "things he does". Include times of day and triggers if you can. Have a list of medications ready, and what...
  12. Katie C

    FTD progression?

    Tillie... using your own things for the picture board is just plain brilliant! And I do understand about having to move slowly... anger is such a large part of the FTD that it's easy for the best intentions to become counter productive. I remember one day Kevin's girlfriend told him "Your dad...
  13. Katie C

    Sleepy all the time

    I would definitly be asking the doctor about CO2 buildup
  14. Katie C

    FTD progression?

    There is some confusion and word loss even with behavioral variant... My belief is that the borders between the variations are soft, not hard delineations. I found that offering Glen too many possibilities it would start to confuse him. Have you tried using a picture board that he can point to...
  15. Katie C

    Looking for help

    First... thanks for the giggle Tillie. Aren't typos grand! Just blame it on autocorrect, we'll all go along! Now... Tillie is right... what you are describing as "recall" IS an FTD issue. It sounds to me like your medical professionals are working with out of date information. Standard belief...
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