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Why isn't the cavalry coming?

jehjeh
jehjeh Member Posts: 97
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Warning: Rant coming

When my dear sister had cancer she was seen immediately by an oncologist. The social worker introduced himself and explained to us both about the support available to her. Whenever she or I expressed an interest in any of their programs or had a question someone called us within a day or two to see what they could do to help. There's a whole building devoted to cancer care through our local hospital and another across town that's part of another group of hospitals. BIG buildings!

My husband has dementia. Here's what is offered. 6 month wait to see a neurologist. PCP and his other doctors won't even talk about it. I woke up this morning to find toilet paper strewn all over the bathroom floor (clean, thank goodness), kitchen drawers reorganized (which means mixed up and not organized at all), husband telling me to throw away the slow cooker because "this guy is gonna kill me"...

So, who do i call? PCP left the practice and new PCP wants to see him but DH has refused any appointments for the last 2 months. We have scheduled, rescheduled and canceled 13 appointments with various labs and providers in the past 2 months because the day of the appointment he is in too much pain or just feels sick. (He's always better shortly after I cancel)

I know the cavalry is not coming, but why not? So many people's lives are being ripped apart by this cruel disease but the medical community is MIA.

Thanks for reading. It was either this or scream, but I was afraid I'd panic DH and all my neighbors.

Comments

  • trottingalong
    trottingalong Member Posts: 612
    Eighth Anniversary 500 Comments 250 Care Reactions 250 Likes
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    I agree. We are left hanging to fend for ourselves. It breaks us emotionally, physically and financially.

  • Jgirl57
    Jgirl57 Member Posts: 631
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    I agree; I was in shock for about a year .

  • Russinator
    Russinator Member Posts: 227
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    In a word or two: it sucks

  • BugziePal88
    BugziePal88 Member Posts: 10
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    I am so thankful that we have a is willing to give us a diagnosis because yeah were told that there was a nine month wait for have an appointment until January and he’s already like forgetting what he’s saying it with no interruptions and having no idea what he’s supposed to say so like crazy anyways I’m sorry you’re dealing with that and I’m thinking the same thing like the brain is arguably one of with the heart to be replaced the brain might be the most important and there’s like no help or urgency. It’s crazy.

    like seriously I had a foot scan and you how precise they had my foot position, but brain scan they are like “eh, it’s good enough”

  • BugziePal88
    BugziePal88 Member Posts: 10
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    *we have a psychiatrist

  • BPS
    BPS Member Posts: 230
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    I heard on a video (I think Tam Cummings) That peoples including doctors would react much differently if the diagnoses was brain cancer. The difference between this and brain cancer is that with the cancer there is hope of being able to beat it and with this there is no hope of ever winning. I have thought about that perception difference and get mad. If my wife had cancer all her friends and siblings would be all supportive and caring with Alzheimers there is crickets.

  • H1235
    H1235 Member Posts: 884
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    It’s not just the lack of support, it’s doctors total and complete lack of understanding. Moms sleep doctor spent 10 min explaining to mom (with dementia and in her chart) how to change the settings on her cpap machine 🙄. The optometrist suggested cataract surgery with no inquiries at all regarding the state or symptoms of her dementia. Her past pcp switched her medication around all the time relying solely on moms complaint of the day vs looking at past notes to see why she was put on the medication to begin with or taken off it. Don’t even get me started on the hearing aids (I don’t take her there anymore). Strangely her dentist is the best. I suspect he has been through this. Shouldn’t there be some kind of basic understanding and maybe some training in how pwd need to be treated a bit differently. Every doctor is so specialized it’s like they completely ignore the dementia, like it’s not even relevant.

  • bjt84
    bjt84 Member Posts: 20
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    There is nothing the medical community can do for the PWD. Current approved drug therapeutics only slow progression for maybe 1/2 of those who take them. That slowdown is measured in months not years. What good is that? Without a cure the best you can hope for is compassion, respect, kindness toward you and your loved one. There is no help on the way. You have to make your own way. It's just the 2 of you. Be nice and kind but don't take on guilt. You're doing the best you can. One day this will end and you'll have the experience and knowledge to help others who find their way to this site.

  • Bunny whisperer
    Bunny whisperer Member Posts: 29
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    I feel the same way as so many as us do. I felt like the medical community treats people with dementia like they arent human and why should they care about whats going on. Ive asked questions of different issues about my DH and they tell me ask the other doctor…passing the buck isnt what I wanted to here when youre looking for answers.

  • Bluebird
    Bluebird Member Posts: 67
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    I think because when there is no cure the doctors really feel there’s not much they can do. My DH and I have a daughter with a genetic condition of the eyes. There is no treatment nor cure for her condition and I see parallels, on how eye doctors treat her and how my husband’s neurologist treats him. They pretty much all said the same thing, that there was nothing they could do. I felt like we were being told they didn’t know what to do so figure it out for ourselves.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more