1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

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Please help..big decline

Discussion in 'I care for a person with dementia' started by Bear44, Jan 28, 2016.

  1. Bear44

    Bear44 Registered User

    Sep 28, 2015
    127
    USA
    So my father is 73 just diagnosed 4 months ago with "dementia ". I know he's had it for at least 2 years.

    Saturday her called me before lunch (my usual time to come over ) and said he didn't feel good. So I threw my 3 boys in the car and raced over to his house. I went through the usual list of illnesses, he kept saying no to all of them. So off we went to the er, 4 days in hospital. No change in CT scans, no stroke, blood work normal, no uti. To explain this massive downturn, he's now delusional ( never was prior to Saturday ) now incontinent.

    They started him on excelon and seraquil (sp). They released him today he can barely walk, incontinent, and literally drooling on himself.

    I'm scared to death at this extreme spiral of health. Has anyone dealt with something similar?
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Bear, I'm very sorry to hear about your dad. You must be very worried and stressed right now. No, I haven't experienced anything like this, but I am sure someone here has and I hope they will have some words of advice or experience for you.

    I am also in the States and while I know things vary depending on what state/county/city you are in, I don't think it sounds like your father got the care he needed.

    I would call his neurologist first thing tomorrow, if he has one, and his primary care doctor (whom I assume was informed of the hospital admission?) if he does not. They need to see him in their office ASAP to follow up on the new medications and advise you further. If he doesn't have a neurologist overseeing his care, or a geriatric specialist of some sort (but I'd strongly advise a neurologist who specialized in dementia), then you need a referral for an appointment ASAP.

    You need to know more about the medications he has been given, for a start. I'm not a medical professional, so take this with a grain of salt and check with a doctor, but Exelon is a medication given for Alzheimer's type dementia, which is fine, if that's the type of dementia your dad has (as opposed to vascular, for example) and it's appropriate for him. The drug name is rivastigmine, for our UK readers. Seroquel (quetiapine) is an antipsychotic, although it's also used for other things. Antipsychotics do not always mix well with dementia patients and they should be carefully monitored, and they are not always the first drugs of choice. I do not want to alarm you, just make sure that someone who knows about dementia and medications is overseeing your dad's meds.

    It sounds like he checked out okay medically, which is good, but also doesn't help to explain what might be going on (as opposed to if they'd found an infection which might explain his symptoms, not that I am wishing anything on your dad).

    If he lives alone at home with no carers/services coming in, I am frankly surprised he was discharged to home at all. Remember that you can fight a discharge, should you find yourself in this situation again. You can seek help from the patient care/discharge coordinators, the geriatric social worker, the patient advocates, or even the chaplain if you can't reach anybody else.

    A hospital stay can cause a sudden decline in functioning that can resolve, but I think you are right to be concerned.

    You may not like my next suggestion, so brace yourself. If his neurologist and primary care doctor cannot help you, or he does not improve, then an option you might consider is to admit him to a Senior Behavioral Health Unit at whatever area hospital offers one. This is what used to be called, Geriatric Psychiatry, or Geri Psych. It is the US equivalent (more or less) of what is called in the UK, sectioning. It usually requires a minimum stay and the wards are locked. Sometimes this is the only way to get a person with dementia (PWD) the treatment they need, or to get their medications straightened out, in a setting where they can be monitored and kept safe, while also getting assessment, diagnosis, and treatment for any other medical conditions. It is not scary and awful like in the movies.

    I am not saying, this is what your dad needs. I am telling you that it is an option and not to be afraid of it. I had about one minute to make a decision about sending my mother to the Geri Psych ward and it was very upsetting at the time. If I had known then, what I know now (that she would receive excellent care and the diagnosis she needed and a thorough assessment and a recommendation for an appropriate level of care and her medications straightened out, all with amazing nurses and staff), I would not have been so upset and overwhelmed in the moment.

    I hope that your dad's incontinence and distress will resolve once he is out of the hospital, and that his physicians will be able to figure out appropriate medications for him and that you can ignore pretty much everything I wrote.

    I am sorry if I have alarmed and upset you but I can sense you are very worried for your father and want what is best for him. It's always preferable to avoid the crisis, if you can, so I think you are smart to seek help and be proactive. This must feel so overwhelming for you.

    I am sorry. Best wishes to you and your family.
     
  3. Bear44

    Bear44 Registered User

    Sep 28, 2015
    127
    USA
    Amy, thank you for the great advice. I've called his gp and now waiting for them to call.
    He does not have a neurologist yet as he was sick and I had to cancel the appointment.

    He does love alone, which was fine until Saturday. I'd do his shopping bring him meals 3 times a day. But he was still able to use the washroom, no delusions etc. And now he can't really walk, he's urinated on himself, couch, floor 6 times since we got home. He's still lying on the couch and it's 11 am.

    I'm not understanding what is happening.
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Bear, I am honestly shocked that the hospital discharged him to home when he lives alone, although I suppose I shouldn't be completely surprised, given the state of our health care system and their inability to communicate at times. I am SO SORRY to hear about what is going on. You must be overwhelmed and very upset.

    It's great you have called the primary care doctor's office. Keep on them until you hear something, which, as it's noon in the Eastern time zone, I hope will be soon.

    Make sure you detail for the primary care doctor all the changes you have seen, especially the sudden incontinence, and inability to walk, and tell her/him about all your concerns, and make it clear you need medical advice about what to do right now.

    In the meantime, you could try contacting both the Alzheimer's Association and your local Agency on Aging/Senior Council office.

    The Alzheimer's Association has a toll free number that they answer 24/7: 1-800-272-3900. They can put you in touch with your local office, and, eventually, resources, but I think right now you may just need a friendly and understanding voice on the phone.

    To find your area Agency on Aging, Google "yourtownname plus Agency on Aging," and see if you get a result. Depending on where you live, it might be based in your nearest city, or it might be regional/cover a number of local counties in your state, or it might even be state based. They usually have trained volunteers on the phone lines who can offer support and advice about resources in your area.

    My other thought is to check your dad's hospital discharge paperwork and see if they list a number for a geriatric social worker or patient care advocate or something like that, and call them and tell them what is going on. Or Google it and call them.

    I am hoping the GP/primary care doctor can offer you some support and advice about what to do next, and I hope they involve your dad being seen by a doctor sooner rather than later. Some possibilities are a return to the hospital, a respite stay in a nursing home or rehab facility, or a fast-track referral to a neurologist/geriatric specialist. If your dad does return to the ER/the hospital/another hospital, make sure the primary care doctor knows (the hospital is supposed to notify them but sometimes don't, and it's faster if you do it). If you don't have the primary care doctor's cell phone number, now would be a good time to ask for it.

    If you are really worried, or your dad is unresponsive or you have any reason to suspect something serious like a stroke or heart attack, or you just don't hear back from the doctor and can't stand it, please don't hesitate to call 911 for an ambulance. The paramedics are likely to be very understanding and helpful.

    This is just dreadful, and I'm sorry.
     
  5. Bear44

    Bear44 Registered User

    Sep 28, 2015
    127
    USA
    Thank you Amy, I will pm you tomorrow. I'm too tired tonight to explain what happened.
     
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Whenever you have time and energy to update us is fine. No worries. I am sending good thoughts and hoping your dad is safe and that you are able to get some rest.
     
  7. meme

    meme Registered User

    Aug 29, 2011
    1,955
    Female
    London
    #7 meme, Jan 29, 2016
    Last edited: Jan 29, 2016
    unless you know exactly what he's been given and why ...... I would not agree to any medication "routinely given" . I would stop it right away.
     
  8. Bear44

    Bear44 Registered User

    Sep 28, 2015
    127
    USA
    To everyone that responded thank you. Sorry if my replies are short but I am on my phone.

    I stopped the seraquil per our gp. He's not a zombie anymore. The incontinence has stopped. Thank god.

    He does live alone, I've been staying here since last Wednesday when he got out. Which is really taking a toll on me and my 3 boys. I'm running back and forth to school 4 times a day.

    I'm STILL waiting on a social worker so I can get a carer in here when I'm not here.

    The confusin is not getting better. More often than not he can't complete a sentence. And today he's extremely restless up and down every 5 minutes. And he refuses to use the walker so I have to pull him up and help him walk.
     
  9. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Bear, I'm so glad you came back with an update for us. I have been wondering how you are all doing. I'm especially glad to hear the Seroquel was stopped and his symptoms seem to be resolving.

    I don't know if any of these are good ideas, but here are the ideas I have, to help you get some care into place (which you clearly need):

    -call the Alzheimer's Association and see if they can get you in touch with someone who will actually respond to you. 1-800-272-3900

    -call your local Adult Protective Services Agency and demand action? I don't know what that might lead to, though.

    -call the social worker on any and all phone numbers you have, at least three times a day, until they come and see you.

    -call the primary care doctor's office every day with an update and to tell them that you still don't have any help and still haven't seen a social worker and by the way, you need an emergent referral to a geriatric neurologist and/or geriatric psychiatrist

    -the US Alzheimer's Association has a message board like TP. You can find it at: www.alzconnected.org. Possibly someone there would have a suggestion for you?

    And I'm out of ideas right there. Wishing you all the best.
     
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hi, Bear, I am bumping this thread up to say hello and see how you and your dad are doing.

    I did get your PM but (probably because I'm tired and keep clicking the wrong button) I keep deleting my response. I will have another try when I'm more clear headed. Apologies!

    I hope you're progressing with getting connected to resources and support in your area. I know it takes time and persistence, especially at first, and sometimes feels like you're going in circles or not being heard, but keep at it. I know I've had very good support from the national Alzheimer's Association, my local chapter, and also my area Agency on Aging. They've been good at fielding phone calls; even when they don't have an answer I always I get some useful information and a friendly voice on the phone is awfully helpful some days.

    I know it can also be frustrating to wait for a referral or an appointment to a new physician. All I can suggest is calling every so often to ask about cancellations or a waiting list for appointment for new patients.

    Please hang in there, and let us know how you both are.
     

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