My response to: Anyone have experience with Psychiatrists being used for LBD patient?

I received this email this morning from LBDcaregivers@yahoogroups.com. My response follows this copy of the email.

Anyone have experience with Psychiatrists being used for LBD patient   Posted by: "drh488" Wed Nov 18, 2009 3:17 pm (PST)

Today we had a Psychiatric nurse visit Mom. By the time she left, she had my mother so emotionally upset that she is ready to go back to a nursing home and die. She brought up things to my mother that happened 30 years ago and hasn’t been discussed in 20 years. Our battle with the outside caregivers has turned into a social worker telling us that WE have become Lewy body dementia. Our extreme efforts to make people understand the disease has taken the place of taking care our mother. Our mother does best when she has structured days. Up at 6, breakfast at 8, regis at 9, lunch at noon….etc. Anything out of that structure causes problems with her. This company sends occ. therapy, phys therapy, and a nurse. We have explained time and time again that our Mom needs structure. To no avail we wont here from them for 3-4 days then they call saying "We are on our way". Next thing you know, 3 people in one day unexpected. My sister is so frustrated. Psych nurse told my Mom that she has LBD, what it is and everything. Brought up old memories of my sister dying, my dad dying. Then she leaves with my mom all upset and my sister to deal with it. Psych nurse wont be back for 2 weeks. I’m calling my Mom’s neurologist tomorrow to see if she should be talking to this psycho nurse…no pun intended….It seems to me that it is more destructive than constructive.  Interested if anyone has had similar experiences Thank You

I felt appalled as I read this post. It goes to show that not all educated individuals use good old fashioned common sense. Even a small child realizes something isn’t right when they see someone being hurt and being in distress.

As an aside, I should mention that dementia is not only a neurological diagnosis but is also an official psychiatric diagnosis.

Unfortunately, in spite of being taught to first DO NO HARM to a patient, medical professionals don’t always have good common sense either. One doesn’t always learn certain things from medical, psychology and nursing books.

Having said this, there is not excuse for someone to get someone upset like this. Psychiatrists, psychologists and psychiatric nurses are taught that certain mental health diagnoses should not be treated with traditional psychotherapy such as schizophrenia and dementia. These disorders are treated with supportive psychotherapy, not with insight-oriented psychotherapy as described in the email.

What good does it do to dredge up the past with someone who has dementia? How can it be helpful? I certainly don’t know. However, if an individual unsolicitedly brings up past memories, that is fine. They can be dealt with in a supportive way whether positive or negative. And reminding someone of past positive memories can be therapeutic as well. But to stir up past memories in any of us against our will is certainly cruel in my opinion.

So, yes, this behavior is undoubtedly more destructive than constructive. Definitely confront the involved providers and request them to discontinue this type of communication and involvement. If it doesn’t stop, go to the next level, etc. If it continues, and if it is possible, go somewhere else! If it smells like a duck, quacks like a duck and walks like a duck then it is a duck………….

This makes me wonder. How many of all caregivers, professional and non-professional unwittingly aggravate and/or cause some of the argumentativeness, irritability and combativeness seen in the dementia population?

I’d be interested to hear of others’ thoughts and opinions.

Warmly………….David

5 Responses

  1. Hi David and Pam, so glad you talked on the subject of Psychiatrist and nurses giving poor care. We had a Neurologist at first. He was not a good doctor at all. I found a Geriatric/Psychiatrist. Jason Shcillerstrom, MD to be the finest doctor, and person, that a patient could want.

    I fully believe that many caregivers instigate much of the agitation in the patient. The patient has all he can deal with without a bad attitude in a caregiver.

    Yes, caregivers are stressed, and yes, very tired, but taking it out on the patient is only going to make their jobs more difficult.Yet, the best of us give way to frustration sometimes.

    Sometimes these displayes from a caregiver is due to feeling trapped in a situation they did not ask for. They are not willing to give up thier own self interest for the betterment of a Loved one.

    Love means give and take. This is time to give of our hearts.

    Love, and showing it, all day long keeps a pleasant atmosphere all the way around.

    Best to you Doctor, and wish the best for you. Hats off to
    you, Pam.

    Imogene

  2. I believe all care givers at one time or another bring out the irritability, argumentativeness and combativeness through our own frustrations with LBD.

    I’ve observed through my mom that she feels my energy, she can see through a smile that doesn’t come from my heart.

    This was creating a problem for me. I was upset with my siblings for not pitching in and giving me a break. I was mad. My mom felt it. Her days and nights were rough, lots of hallucinations and confusion about where she lives.

    I’m a trained Clincial Hypnotherapist, so I know what to do to bring peace into my life.

    I am writing my blog posts geared toward being a successful care giver. It’s helping me to get to a good place mentally.

    I’m a better care giver when I am happy and well. My mom? she sleeps through the night and her bad days are what her good days used to be like.

    David, you are right, based on my experiences, care givers can cause their own problems with their wards through their stressed out behaviors and attitudes.

  3. If everyone were to read Oliver James, ‘Contented Dementia’ they would have a much better understanding of how to keep dementia sufferers in a state of contentment. I’ve just spent two days training in the SPECAL approach the book describes. It is SO GOOD. The charity I work for has over 200 years caring for the elderly, so I have a benchmark to go from – and SPECAL is GOOD.

    If ‘Contented Dementia’ is not ‘official’ enough for you, read Tom Kitwood’s ‘Dementia Reconsidered’ (Open University Press, 2008. He talks about caregiver projection and so on.

    But, give yourself a treat. Read ‘Contented Dementia’. Get it from a reseller off Amazon if necessary, but get it.

    Louise

  4. As a caregiver I know first hand how important it is to avoid aggravating, agitating, confusing or making demands on my loved one. The lbd forum is a good place for more insights. I repeat the NEVER list from that source.

    Never “argue”, instead “agree”
    Never “reason”, instead “divert”
    Never “shame”, instead “distract”
    Never “lecture”, instead “reassure”
    Never “remember”, instead “reminisce”
    Never “I told you”, instead “repeat”
    Never “you can’t”, instead “do what you can”
    Never “command or demand”, instead “ask or maybe”
    Never “condescend”, instead “encourage or praise”
    Never “force”, instead “reinforce”

    And always say thank you to David for his great blog.
    Thank you David!
    Mark

  5. Mother has had a psychiatrist as part of her team for a couple of years- she is his first LBD patient, he is kind and willing to learn. He has helped a lot with her meds. She also has a clinical psychologist- he has the patience of Job answering her questions and helping reassure her. She does know what she has and for a long time asked tons of questions. We’ve never lied to her but have waited for her to ask. If you have doctors or others that aren’t what you need- fire them and keep hunting -there are good ones out there
    my .02 worth
    Sharon

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