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Things Are Getting Worse and We Still Have No Diagnosis

Discussion in 'I care for a person with dementia' started by Ann422, Nov 15, 2015.

  1. Ann422

    Ann422 Registered User

    Aug 9, 2015
    35
    USA
    #1 Ann422, Nov 15, 2015
    Last edited: Nov 15, 2015
    Brief recap: Mother lives at home on own, age 88, with Congestive Heart Failure/Advanced. Very fail and weak and hospitalized frequently. I started to notice changes in memory & behavior and I have long suspected either Cognitive Impairment (one diagnosis years ago) or dementia.
    She was again hospitalized for failure to take her medication properly. This is fourth hospitalization in less than one year for non-compliance. She was always very compliant. I do know that she “forgets” to take her pills or as she recently told me “she drops them on the floor sometimes”. She will not allow carers into her house. Throws them out or does not answer the door. Bottom line is she is not legally impaired and, therefore, we cannot force her to do anything.
    This last hospitalization, she had a delusion. She believes that she was drugged against her will, put into a room, for what reason she does not know and could not remember the rest of the story. She is filled with fear and anxiety constantly. I called my brother, who has been in denial about possible dementia, and said “You do see that this is clearly delusional, do you not? And he said “yes and what do you want me to do about it?" (he has POA). And he is right. What can we do about it? He told me that she has been seen by four psychiatrists. They don’t see it. How hard is it to see. We do not know what to do. If we got a diagnosis what would we do with that? She is on public aide and in the USA there is no assisted living for that. She is too ill to attend day care. In any case, we can force absolutely nothing on her. And I wonder if we even should. What are we saving her from? I am lost. Even with a diagnosis, I don’t know that there is much we can do. We do not want to put her into a Nursing Home. I cannot reason with her to take her meds/she forgets. I cannot reason with her that she needs carers/she doesn’t see it that way. She eats and drinks very little. Just one question: is there anything I can say to calm her down. She is agitated all the time and quick to anger. I am walking on eggshells
    Thank you for reading this.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,717
    Female
    London
    You live in the US and I don't know very much about your medical system, but I do think she ought to get a proper diagnosis and be tested for mental capacity, and I am a little surprised that no one at the hospital ever thought to test her for that, unless this costs extra of course so they omitted it.

    Why don't you want to put her in a nursing home? She sounds like a prime candidate to me and it might be what's best for her.

    In the meantime, let me leave you with this article about compassionate communication as you are right - you cannot reason with someone with dementia.
    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired
     
  3. Ann422

    Ann422 Registered User

    Aug 9, 2015
    35
    USA
    As I said, my brother has had four psychiatrists have a look and no diagnosis. As to the hospital doing that, it is a very large instituation, a good one, but she is on the heart/stroke wing, so I imagine that don't notice? I just don't know. And, we cannot put her in a nursing home against her will. She is not declared legally incompetent and is a free agent.
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Hello, Ann, and sorry to hear what you are going through with your mother.

    As far as not upsetting her when you talk to her, the main point is don't argue, don't contradict, don't explain, just go with the flow and let her talk. When you get a chance, do your best to express care and concern and end by reassuring her (we will look into that for you, we can take care of that, let me talk to them, et cetera) and then distracting/redirecting if possible. That's the short version, but I hope you get the idea.

    If your mother is still in the hospital, you need someone on your team! Ideally you want the hospital's geriatric social worker, but any social worker, ombudsman, patient liaison person, or even the discharge coordinator, would be a start. If all else fails, call the chaplain.

    Possibly what your mother needs, once the heart situation is dealt with, is a stay in the Senior Behavioral Health Unit, and there may or may not be one at whatever hospital she is in, so it may need to be another facility. It is also sometimes called, or used to be called, the Geriatric Psychiatry ward (GeriPsych). I know it sounds scary but I swear, it's the best thing that ever happened to my mother. (For the UK readers, this is more or less the equivalent of being sectioned into a ward designated for pensioners/senior citizens.) While she is on the Geri Psych ward, she should get a complete workup and assessment that will help decide what kind of care she needs and how that should be provided, and you can insist that she not be discharged until you are able to set that up, and their social worker should help you.

    If she is not in the hospital, go online and Google the name of your city and/or county and "senior services" or "area agency on aging" until you find the one for where you live, and then call them and ask to speak to a social worker and/or case manager. Don't give up until you get help.

    I know a lot of this depends on your location, and the resources available in your city/county/state. I'm sorry this is the best practical advice I can offer and wish you all the best.
     
  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    I thought of something else that might be helpful; apologies for not including this in my last post but I was tired and forgot.

    Contact the US Alzheimer's Association at 1-800-272-3900. That's a 24/7 number. They can put you in touch with resources in your area and possibly even a local chapter. Despite their name, they offer support for all types of dementia (MCI or mild cognitive impairment included) and it will not matter if you've not received a formal diagnosis, they will still talk to you.

    Another option to an inpatient stay in a Geriatric Psychiatric hospital ward (although again, please don't be afraid of this) could be a referral to a comprehensive workup through a senior care/geratric care clinic of some sort. These can have long waits, just to warn you. Ideally you would get a referral from a primary care physician, but this may not be necessary, depending on the clinic.
     
  6. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    Amy has said most of it, but what do you mean by public aid? I am guessing you mean Medicare--true, they do not pay for assisted living. But, if your mother's income is low, she can qualify for Medicaid and some (not all) assisted living places do take this. Definitely, if your mother is still in the hospital, speak with the social worker/discharge person about options. It is often easier to get a placement from a hospital stay than from home.
     

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