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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. Hello, I just found this site and since I live where there are no support groups. I thought I would try this. The short story is that I have a sister who is diagnosed with schizoeffective disorder, anxiety, and depression. Just recently with diabetes. I naively thought that once she moved home and left her stressful job and had family around she would get better. She has not and I’m not sure why as there are too many unknowns: is she taking all her meds, is she on the right dose? Her psychiatrist doesn’t seem very helpful but I don’t know. She sees a therapist but told me she has a crush on him so I don’t think he hears the whole story.

    Her life was in a horrible mess when I first went down south to help her, she owed back and misfiled taxes, spent an entire pension (which she didn’t declare) I had to work with work comp to have treatment done on her arm, file for LTD, unemployment, Cobra etc. My husband and purchased a mobile home for her to live in so her rent could be as low as possible. And we had to support her until she had some money coming in. Anyway it took two years of hard work to clean it up. Then it started, she wanted more spending money all the time. Finally it got to the point where she couldn’t pay her rent and I told her she had to have a payee, either me or someone else. I just couldn’t deal arguing with her all the time. She was ready to have me sign up as her payee until my narcissist mother stepped in and said she was going to do it, until she left for FL for the next 6 months. My sister did get SSdi but once her LTD stopped her income was cut in half. Now one year later my sister has no savings, owes taxes, needs more money for her insulin, other medical bills, her car is 16 years old. She has worked a total of 8 days in two months.

    We stopped talking after my mother took over her money except for a bit of chit chat for six months. When she was diagnosed with diabetes we started talking to each other more. I felt so sorry for her, being diagnosed with diabetes was extremely hard on her. It was nice for 2 months before she went back to her old ways.

    This whole process has been hell on my health as well as my family. I first was diagnosed with Epstein Barr in 9/15 and in 9/16 was correctly diagnosed with chronic lyme and several coinfections. I am mostly homebound.

    This may be horrible to say but I don’t want anything to do with my sister or my mother. The stress that has been caused in the last two weeks is murder on my body. Maybe in their on way they love me, but I’ve been the one that has to do all the work while they just complain and criticize. It’s killing me. People tell me that I need to think about my health and I understand that. But it breaks my heart to see my sister living the way she is. Even though my sister has been very difficult I still love and care about her. Not so much with my mother.

    Am I awful person for wanting to have nothing to to with my family? Is there a decent book out there for people like me? I just don’t know what to do. Thank you.

  2. PS. I meant so say, thanks for this blog Randye. So many stories and descriptions which resonate (albeit painfully). Sometimes it helps just to get things off your chest. Where I live (very rural) there are no groups, indeed nothing at all for carers of mentally ill adults.

    1. Wendy,

      I am so sorry to hear of your troubles. My heart goes out to you. It sounds like you have tried very hard to keep your son safe since he became ill. I would listen to his health care team, and ask them what they think is the best course of action for your son. We all have a point we reach when we can do nothing more for a loved one. I would seek a therapist’s advice concerning this, so that you can feel confident in your decision. Also, many family members need someone to talk to just to deal with the stress of another family member’s mental illness. You deserve that kind of support. I hope you can get it. Take care of yourself.

      Blessings,
      Taylor

  3. I’ve read all the comments and responses on here and it breaks my heart. My son is 25 and was diagnosed with schizophrenia at 18. His father’s mother had schizophrenia. I brought up my son on my own until he was a year old when my partner moved in. He acted as his dad throughout his childhood. Like many, my son smoked cannabis at around 17 and his real father has always said this was the reason he has schizophrenia. I don’t believe this to be the case, since he smoked so little. He spent some time in his father’s home town, had several episodes of psychosis and has been sectioned 5 times. He initially went there for a college course which after one and a half terms he was unable to finish. He has lived in social housing (because after just 5 months his father, who was in another relationship, could not cope) for five years. During his time away he came to me for holidays – half terms, Christmas, Easter, summer.

    Many of the accommodations my son has been in have been fully supervised and (even with continuing cannabis use), things did work reasonably well. But they cannot stay in fully supervised accommodation for longer than 1 year and when deemed well enough are moved on to partial supervision. At this point my son’s cannabis use gets out of hand and he forgets to take his medication (Clozapine). He then thinks he’s much better, discontinues the meds completely, and is sectioned again. This has been the pattern in the last 5 years.

    The last time this happened, I was told that a (not very nice) hostel was the last thing available, and since he was now taking legal highs as well, the future looked bleak. His real father withdrew all support in May of last year so there was even less likelihood that he would cope. Unable to bear this, I decided to have him home again, even though he’d only spent 1 1/2 months in hospital and was still very unwell. He has been with me now for six months and although I said immediately that he would need accommodation, the mental health team have drawn things out with several repeat meetings at houses etc., and have now told me that it will be another 5/6 months before he is offered a place, and then (because he has such a bad record) only for a month’s trial. I don’t know if I can cope with this any more as my son is resentful of my ‘rules’, i.e. no cannabis in the house. I was an ‘old’ mum and I am now 64. Having read the other comments, I feel that I must ‘let go’, but of course I don’t want to see him homeless. Should I just present my son (with his suitcase) to the mental health team and tell them to find him somewhere immediately or he will be homeless? My own health is deteriorating. I realise that this is a US blog so there are probably completely different procedures, but do you think this might work? I feel so guilty because I have a daughter still at home who is studying for a degree, my partner is still working and doesn’t retire until next year, and his father is now ill so he is under a lot of pressure too.

  4. Hi Deborah, Evie, Karen…
    All I can say is I feel your pain – literally. The anger, too. the helplessness, and grief. It is so hard to have an ill relative, and when the illness is of the brain the stigma increases and the support decreases. I hope you can reach out for support (as you have on this page) to NAMI, or other groups who provide education and support for families. How can we help our loved ones if we are at the end of our own ropes?
    We are lucky right now. After years of baby steps, our Ben is employed, on his meds (reluctantly, but we supervise) and is getting his life back. This did not seem possible to me years ago. It still can all go away in 2 days if treatment stops. This is why we work so hard to advocate for our rights as family members. My heart goes out to you. You are – sadly – not alone.

  5. I’m lost with my mentally ill son. I am exhausted, my husband has always hid behind his job saying “someone has to make the money here” while all this is dumped in my lap. My career is long gone and still with all my sacrifices I have no idea how we/I ambgoing to get my son settled before I die! Really? I have to make my son HOMELESS before we can get him to help himself?!? He CAN’T help himself! Why do you all accept this? It is inhuman! It is exhaustive and unfair to everyone. The laws inhibit so much of the care our children with mental illness need. The social services are uneffective, buck-passing and immune to everyone’s pain. They are either lazy and mean, overworked, burnt out or just completely unable to do what needs to get done because someone or something is tieing their hands. The mentally ill don’t have time to worry about if their civil-rights are being violated! While all the legal talking heads try hashing things out we, the actual ones in need of help are ready to scream – then of course solves nothing and creates yet another person too frustrated to use whatever energy they had left flushed down the drain! -Sincerely – who cares?

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