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Families as Caretakers of Mentally Ill: Helpful or Harmful?

Last week, I blogged about some good news: Ben, my son, was discharged from the hospital and is getting his life back (read:
Mental Illness Recovery Support: Doing it Right). He went back to his job (supported employment info), is taking his meds, signed up for fall college classes (6 credits), and will begin his outpatient program soon. So – some pieces are in place and that sudden lack of structure that had been a big part of his schizophrenia relapse two months ago is gone.

So far so good.

But here’s the thing. We made a discharge plan that included his “visiting” the family for a couple of weeks while we get the plan cemented, so right now I’m in charge of schedules, medication supervision, and transportation. And yes, of course I have a “real” job so can’t do this forever – but I am reminded of how much better Ben does when he has a community around him.

Tough Decisions Families Make When Caring for an Adult with Mental Illness

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The question remains: How do we do this? How much caregiving is too much when your “child” is almost 30 years old? (listen to: How To Support an Adult with Mental Illness)

He’s getting a little sick of Mommy reminding him to brush his teeth, though – and the dynamic won’t be great for long. Plus, there’s a business trip coming up for us – we won’t be home – and Ben has to be back into his program by then.

So – checking out the options.

I remember clearly the first time I had to make the decision to make Ben homeless. 2003, the year of five hospitalizations. Finally balanced on clozapine, Ben could no longer stay in the hospital – but I knew that, if discharged to my care, I could never get him into the system that could manage his care when I could not. He needed his Social Security, Medicaid, Medicare – and, ideally, a bed in a group home. I made the decision then to be his mother, not his social worker – and it was so difficult. The guilt I felt!

I will never forget the social worker who came up to me after the meeting and said something unexpected that guides me to this day: “Randye, I know that was so hard for you to do – but I applaud your decision. Ben will get into a group home and learn how to grow up. Living with parents, he’d probably never do it. Do you know how many patients we get in here, in their forties or fifties, who still live with their parents and never learned to take care of themselves?”

I took comfort in her words and treasure them now. The reason Ben has accomplished so much since 2003 is due to the fact that he had his own life – albeit guided by the family of caretakers in his group home. Now, in a new “independent living” situation, how do we recreate what worked before? How to guide him from the wings? That’s the challenge, and our goal. We are building a new foundation – I hope.

(You may find this article helpful: Dispelling the Fear of Care-Giving.)

35 thoughts on “Families as Caretakers of Mentally Ill: Helpful or Harmful?”

  1. It’s very difficult to know what role to take with a mentally ill relative. Your unconditional love for them binds you to do whatever you can, but sometimes I believe “tough love” must come into play. I am not a relative of someone with a mental illness. I am the person with the mental illness – Bipolar Affective Disorder. I was diagnosed when I was 20 years old and am soon to be 52 years old. I was extremely lucky to have a caring family – mother, father, 5 siblings who all supported me during my episodes.

    Now at this time of my life, having just recently had an inpatient stay at the psych ward, my two daughters (19 and 21) cared for me. I absolutely detest going into hospital because of the full blown psychotic nightmare that I experience and also as a patient put on an involuntary treatment order, I have no rights. I “made” my older sister make the decision to admit me as I will no longer admit myself (but that’s another story). I put her through a lot of pain and grief as she knew I didn’t want to go but she is a very strong person and I knew she would do the right thing and defy me for my benefit.

    I am very thankful that I live in Australia with a very good social security system and was put on a disability pension. Everytime I went back into employment I would eventually become sick. I don’t understand why doctors insist on getting you back to work especially so soon after an episode. I don’t work in a paid job now but I still work for free doing research on mental health, human rights and voluntary work.

    Sorry I am going on a bit but just wanted to share something – my 21 year old daughter said to me one day, “Mum I don’t you ever want to worry about being alone when you get sick. You can come and live with me”. I said to her “I do not want you ever to say that to me. I love you dearly, you beautiful girl but I do not intend to become a burden on your young life.” I now have a support system in Brook Red Centre, a peer support organization, and I have a case worker and psychiatrist.

    I live with one of my daughters and my niece. I am 4 weeks out of hospital so still have a way to go. Seroquel makes me sleepy and lazy and I’ve been on Lithium for over 30 years (wonder if that’s a record). I am also on Epilim and lots of other medication for various disorders. I feed myself, I shop, I look after my own medication.

    I am at present researching the stigma regarding mental health. I agree with Randye about “letting go”. I had to let go of my prideful self to let others help me and all I really know is just love your loved ones, even the “different” ones.

    1. Rhonda –
      Thank you so much for sharing your story here. Your perspective is so valuable, and I applaud your honesty, resilience, courage, and love. To know what you personally can or can’t handle is amazing, and I imagine you have gone through a lot to get to where you are. Thanks again, so much. I learned a lot from your comments.
      best,
      Randye

  2. Rhonda:
    I admire you so much. You have a beautiful soul, which is most important.

    My son suffers schiziprenia and now he is 23 years with the illness.

    You have helped me with your story. Thanks.

    Mirtha

  3. We went through the process of making our son “homeless” early this year, after his 7th hospitalization. At the time, I felt I was “selling him down the river,” but these days I can see that, in fact, I was bringing out the safety network of the system in ways I could never catch him when he was to flounder with his illness. He had asked me many times why I can’t be his conservator, to which I had to respond that I am his mother, and as such I can advocate for him in ways that brings together diverse resources for him, rather than my having to be so exhausted by his daily care (including the fights over the medications) that I become useless to both of us.

    We are still early in the journey to see how it will unfold, but having had the system step in, and with my help to make sure that everyone is on the same page regarding his care, he too has been finally released and moved into a group home and about to start taking classes at the community college.

    Reading your post here and your blog (and soon your book) has been very helpful, because your honesty and passion helps those of us int he same situation feel so much less isolated.

    1. Maria – thank you so much for your comments – I’m so glad to know that the blog is of value to you.
      Sounds like we have a lot of similarities in our stories! It’s wonderful that your son is starting community college, and will have support in a group home – college has been great for Ben, truly, and in his seven years in a group home I felt free to be his mother (you know just what I mean). I am Ben’s conservator, btw, and for us it has been very useful (especially if I need access to Ben’s medical info).

  4. You ladies give me hope that by making my unwilling son get help, I may be doing the right thing. This is very scary for me to do to him as I know he feels he has no one. He believes that even I am only wanting to get rid of him and I am scared that doing this will drive a wedge into any future relationship I try to have with him. But it’s getting so bad that we can’t live with him. Someone tell me I’m doing the right thing by forcing treatment on him. I want to have hope that his future is not as bleak as he thinks it is.
    Fran

    1. oh, Fran – how familiar it all sounds. You know what you have to do…for your own sanity, and hopefully (eventually) for your son’s as well. You have your journey, he has his – but you are together for a reason. More support to be had at NAMI – but you probably know that. Hang in there. You are far from alone.
      Randye

  5. Hi Ashley –

    thanks for reading my “mental illness in the family” blog on
    HealthyPlace.com –

    I couldn’t really “approve” your comment, as it is rather off topic, but do
    want to answer your question!

    Most blog sites are user-friendly – i.e. you just write the way you would
    in an e-mail. If you know HTML coding, there is an option to do that as
    well – but you don’t have to. I took a short course in the basics of HTML
    just so I would have some idea of it – but not a must.

    If you want to start blogging, then wordpress.com will get you started for
    free – including tutorials. Good luck!
    Randye

  6. i found this prayer on the internet, and feel like it is so profoundly accurate as to what i experienced, from the years before i knew and years since i became aware, it hurts when i think of those years of experience and education that is heart breaking for a mom. we have been through exactly what this mom has been through and all mothers who are advocates and caretakers of our kids, in my case my son who was assessed at 18, and is now 21, he is taking clozapine which has been my god send,as well as his dr.s and councillor, the bcss, and the mental health clinic in our town. its been a tough trip, but i finally see my son again, i pray every morning, and thank god for his progress his smile, his sense of humor, his dreams, i will help him as i need to.. we are now in the position to move on to getting him more self sufficient, he is on disability, i am active, in educating the community awareness and stigma about mental illness, to create the best quality of life in his surroundings that i can. there is now a place in our community that he can learn to be more independant, and i pray that in the future it will be a part of his path, so that he may be more independent of me and his dad. but i am bent on doing whatever i have to do to keep his dreams alive, and letting him know that his experience is god given, we dont always like what we are dealt in life, but there is always a reason and a purpose for it, i hold on to that belief, and believe in it strongly. Peace and love, hugs and prayers to all mothers, families and friends of those who suffer from any form of mental illness, especially schizophrenia, which is what my son has suffered signs of…

    A Mother’s Prayer for Mental Illness

    As I stumble from my bed this morning, help me to remember to be gentle and kind.
    My child’s mind is shredding into a million pieces. He lives in a constant state of atrocious fear. I can see it in his eyes. Give him peace.

    Guide me as I hold him in my arms. Help me to know what to say. What to do. Fill my heart with healing love, understanding, and empathy.

    Give me the strength of a thousand angels to hold back my tears. My heart is broken and a tidal wave of grief is overwhelming me with the need to cry. Give me the strength to bear it long enough to keep it from disturbing my child. Help me find someone I can safely bring it to.

    Help me answer my family’s questions with the same amount of compassion I would want for my self. Help me remember they are hurting too. This is an unwelcomed assault on an entire family. My heart is not the only heart that is broken. We all need time and each other to heal.

    As my journey becomes more and more isolative and lonely, remind me that the lack of involvement on the part of family and friends is not always because of the stigma and the ignorance. For many, it is because they are hurting too. They have the privelege of turning to their own lives. This is my family’s life now. I must deal with it whether I am hurting or not.

    Send me your best physicians and healers. Give me presence of mind, as I walk through the exhaustion of my grief to not settle for just any one no matter how tiresome the journey becomes.

    Help me adjust to the idea, that although it appears my son is gone, there will be no goodbye. And that he is still inside somewhere waiting for us to find him.

    Infuse the creative part of my mind with solution oriented thinking. Give me hope. Even if it is just a glimmer of hope. A mother can go for miles on just one tiny glimmer. Let me see just a flicker of the sparkle of joy in his eyes.

    Guide my hands, calm my mind, as I fill out the multitude of forms for services. Then help me do it again over and over.

    Provide me with the knowledge. Lead me to the books I need to read, the organizations I need to connect with. As you work though the people in my life, help me to recognize those that are here to help. Help me trust the right ones. Shine a light upon the right path.

    Give me the courage to speak my truth; to know my son’s truth. And to speak for him when he is unable to do it for himself. Show me when to do for him what he is not capable of doing for himself. Help me to recognize the difference.

    Help me to stand tall in the face of the stigma; to battle the discrimination with the mighty sword of a spiritual warrior. And to deflect the sting of blame and faultfinding from the ignorant and the cruel.

    Preserve my love for my family. Shield my marriage with the wisdom of the love that brought us together.

    Protect him from homelessness, loneliness, victimization, poverty, hunger, hopelessness, relapse, drugs, alcohol, suicide, cruelty and obscurity.

    Lead us to the miracles of better medications, better funding, better services, safe and plentiful housing, meaningful employment, communities who care, enlightenment. Help us to find some way to replace all the greed with humanitarian work and intrinsic reward again.

    Most of all, give me the strength to deliver whatever I can to the work of unmasking the man made ugliness of this disease and revealing the human and all of it’s suffering beneath.

    Finally, when it is my time to leave my son behind, send a thousand angels to take my place

  7. Hi Mom, I too, found “A Mothers Prayer” on line several yrs ago and posted it in “Parents of Adult Consumers” discussion group on the NAMI website. This prayer reached my core and continues to resonate within me.

    After many yrs, hospitalizations, arrest, jail time, homelessness, my, now 30 yr old son is living independently in his own apartment, drives his own truck, has his dog and attends college fulltime. He is maintaining a 4.0+ GPA. But, he is also on an outpatient commitment with forced meds. He lives with schizophrenia, paranoid and suffers severe anosognosia. The challenge for myself is to keep his OP commitment in place, as he will discontinue meds if not forced.

    Thank you for posting this incredible poem. I believe it is ‘Author Unknown’ But, we here know the Author ~ she lives in all of our mothers hearts whom have a child with a biological brain disorder ~

    Happy Randye Day ~

    Michelle

  8. I am a consumer of Mental Illness and my family tried to take care of me when I was diagnoised with schzophrenia at the age of 21. My family was heartbroken and it isn’t just my illness, it affects all of society. I have been living on my own since I was 35, but now I know what hell on earth is and it just doesn’t affect me. It affects all of my family, and they don’t understand my situation. I was doing drugs and I had been since I was 16. The family usually takes the burden of the responsiblity for the adult child that they don’t understand and want the best for the loved on affected by the illness. However I feel that the system that is seperate from the rest of services and because it is such a life disabilitating and their isn’t much help except group homes which are usually just a economic excuse for not wanting to spend the money because you are no longer useful to society, and aren’t contributing to the financaial well being of the social system. However the families are not educated or really aren’t sometimes emotionaly capable of helping the loved on because they are emotionaly physicaly and finacialy capable of dealing with a person that is mentally ill. The community demonstrates thier ignorance of the fact that menally ill people do exist and need to be heard. The family assumes the role of sheltering the emoitional afflicted offspring and do feel guilty and their emotional and mental needs do affect them. It is sad that they always tell a person with mental illness that they are in denial, what about the people that are in denial in the community because of their beliefs of a person with mental challanges and need to be more aware of the people with a Mental Illness. Istead of ignoring them and denying them accept them and the more they know of a person, because if we do have a mental problem then don’t lock them away and destroy a beautiful work of the creator. And quit denying their fear of them, I am a person too and I do need you as much as you need me.

    1. Hi James,
      Thank you so much for taking the time to share your insight and perspective with us. It is so valuable.
      One of the reasons I wrote Ben Behind His Voices is to show how education for the family is so vital. Without it I don’t know if we would have felt empowered to be helpful to ben. Education helps the family be better partners and help give support in healthier ways.
      Thanks again!
      Randye

  9. I think it’s great that you are supporting Ben in his illness; but not enabling him. My marriage ended because my husband and his son were in denial about his son’s bipolar / schizo affective disorder. (I wanted C to adhere to his treatment; but they weren’t ready to accept it). I pray every day that both my ex husband and his son are making better choices. I am pursuing an MA in mental health counseling because of the profound experience I had, and because I know that there is a lack of support for families dealing with the disorder.

    RMarks

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