Caregiving and living with those who have mental illness

Your mother has been up all night.

She has Alzheimer’s Disease and now it has progressed to that inevitable stage of the dementing process where she is paranoid, agitated, and confused. She fidgets and paces and walks all day. She gets out of bed multiple times each night. She has gone out the door into the back yard and tried to escape to the street, wearing only her night clothes. Sometimes she doesn’t even know who you are, but you are solely responsible for her ongoing care. You are losing weight, not sleeping well yourself, not able to concentrate, have no interest in your hobbies, and are thinking that it would be easier if both you and your mother died and this was all over.

Your son used to be a strapping, handsome lad with tousled brown hair, deep brown eyes and a quick, winning smile. At nineteen, he won a scholarship, was making good grades his first year in college, and had many friends. Now, he is back home with you. He quit studying, thought his professors were all out to see him fail, and alienated all his friends. He sleeps all day and plays video games all night. His face is sallow, his clothes hang on him, and he drinks too much. He tells you that the end of the world is coming soon. The voices in his head have told him so.

Your spouse is getting worse. The daily six pack of beer has turned into a case. You suspect he is buying marijuana or maybe even cocaine downtown, something he has never done before. His mood is erratic, swinging from angry and mean to insanely happy about everything. He has started fifteen different grandiose projects that will change the world, but can’t manage to take out the trash. He hasn’t hit you yet, but the arguments are more heated and they come much more often than they used to. You knew about his illness when you married him, but this is much worse than you bargained for. You’re frightened, and you wonder if you need to cut your losses and get out. You’ve made a call to a local shelter for battered women, and you’ve hidden a packed suitcase in the closet. If it happens again …

Do any of these scenarios ring a bell? Are you or someone you know a survivor, a caregiver, a person who lives with someone who suffers from some kind of mental illness every day? If so, you may be at risk. Your own mental health, physical health, and well being may be in jeopardy. If you are depressed, feeling suicidal, not sleeping or eating, missing days at work, or just feeling like you’re close to giving up, what can you do? There is help.

Your own family doctor can be a great asset. See him or her and ask for help in finding resources, local meetings or support groups, or even for help in treating your own depression or anxiety that commonly comes from the stress of being a caregiver.

Clergy can also be helpful. If your spiritual tank has run dry, speak with a trusted priest or pastor or minister who can listen to your concerns and guide you in the right direction.

Counselors, therapists, psychologists and psychiatrists may also be able to help if the stress of caring for someone you love has lead to your own mental health issues. This is not uncommon, and it is certainly nothing to be ashamed of. Seek help for yourself so that you may continue to provide the support for your loved one. You can’t help someone else if you’re hurting and broken yourself.

Caregiving and living with those who have dementing illnesses, mental health problems and substance abuse or dependence are hard work. Sometimes love and good intentions are not enough. Sometimes you need help yourself.

If you need it, get it.

Today, please.

Greg Smith is a psychiatrist who blogs at Shrink Rapping.

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  • Ginny Miller

    This is a wonderful article! The problem is that all too often doctors, PCP as well as specialists fail to offer much support beyond empathy when families deal with mental illness. We have recently had our long time PCP as well as our son’s Pediatric Psychiatrist said he could no longer be his primary treating psych. He is too complex. He will consult on his care, but that is all. We cannot find a doctor. IN the past we have had to find our own support, our own treatment facilities. Doctors urge us to find help, but are not available, or assisting in any other way. There is nothing in our area, no social workers, nothing to help ease our burden in the long-term complex care. He has had misdiagnoses that caused more problems. Those doctors never took the false diagnosis out of his chart. They also did not speak to my son to apologise for the problems they caused hiim. Doctors hold such power in the support or lack of support for families. Giving the direction for moral support in times of mental illness is crucial for the best outcome!

  • Frieda Hernandez

    I also found this a great article and the scenarios are particularly poignant. In researching this issue for work as well as recent personal caregiving experience, I find that the primary care physician is seldom very helpful. Very little coordination of care with specialists too. A good therapist can provide excellent recommendations and help the caregiver care for themselves. The internet and caregiver support groups are proving to be the best bet for finding resources and connecting with others that can share their perspectives and help you navigate the mental health maze.

  • Peter Jones

    (Sorry for x-posting – I found you on WEGO, I’ve added some more notes here.)
    When carer’s have an opportunity to engage with the health care team, it is essential that that time is used to best advantage. For the patient and the carer – as their relatives advocate and for the carer themselves. How, indeed are they coping, their mood, finances, space and time for them – respite, sleep? To this end I often explore a ‘situation’ using the Health Care Domains Model. Of course only when this is appropriate, in times of crisis everything needs to follow the individual’s capacity to think, problem solve and make decisions which when dealing with severe substance misuse, psychosis, dementia and or aggression can be extremely difficult if not impossible to the carer concerned.

    In use though the model supports reflection, person-centered and holistic care and can be very useful for carers and health care professionals in considering “Have I missed anything?” What is the situation I am dealing with? What are the options?

    Consultants and other mental health professionals have little time so we need to maximize the time afforded in appointments. This model is also helpful in education, facilitating self-care and relapse prevention. In the UK I use the model as care co-ordinator, calling reviews and ensuring that carers have time to explain their account and feelings about the ‘care plan’, progress and outcomes thus far.

    I have found that it is often surprising what resources carers create for themselves in the way of self-help groups, so it’s worth exploring the local community, phone books, libraries – although many groups are under pressure due to the economic climate.

    The blog “Welcome to the QUAD” highlights many aspects of the mental health maze and includes a bibliography and an growing archive. A mix of nursing, health, education and informatics.

    The care domains of the model each has a dedicated resource page – mental health is covered here:

    Best regards,
    Peter Jones
    Community Mental Health Nurse NHS
    Independent Scholar & Informatics Specialist
    RMN, RGN, CPN(Cert.), PGCE, BA(Hons) Comp/Phil, PG(Dip)COPE.
    Hodges’ Health Career – Care Domains – Model
    h2cm: help2Cmore – help-2-listen – help-2-care

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