My daughter is in her early 20s. About 10 months ago, she developed a first episode of psychosis and spent 3 months as an inpatient, before coming home. She did not respond sufficiently to the first medications tried but eventually, agreed to try Clozapine. She has no history of mental health problems, drug or alcohol misuse and her doctors have not identified any risk factors that may have led to her illness. She is being supported by the community mental health team and usually has contact with them twice a week. She is making progress and can manage gym classes, meeting small groups of friends, we go on days out, walks, she does her own cleaning and washing etc. Her symptoms are very much reduced, if you visited, not knowing she was ill, you probably would not notice any symptoms. Occasionally (every few days, but not daily) I notice she may still be hearing voices, as she nods or shakes her head, but she is reluctant to discuss these type of symptoms.
Her consultant has suggested she increase her clozapine dose following blood tests, my daughter has declined. She was introduced to a Psychologist to work with, but has declined. She was encouraged to work with Mind support group, she attended the first online session, but no more sessions. She was put in touch for some individual sessions with Mind, did the first introductory chat, but no more. When myself or her father try to talk to her about her condition or why she does not want to increase medication, she gets cross. It appears either she is hoping it will all go away without having to face it or she does not acknowledge the extent of her illness ( I suspect a mixture of both these things).
She takes her medication without any problem, will meet with her mini team from the community mental health team and is open to talking about her anxiety symptoms with me. On a day to day basis she is pleasant company, and clearly wants our support. I feel although she has made a lot of progress since coming home, she is working hard to hide her symptoms from us and herself.
I am trying to adjust to her condition and finding that I can think of little else. I am constantly hoping she will be able to make a full recovery (lead the life she wants to lead and be happy) but constantly worried she won’t or could deteriorate. I am worried that not increasing her medication or engaging with any therapy is putting her recovery at risk. Can people take more time to accept this is what is needed? Without therapy and a medication increase, can she make a sufficient recovery?
Many thanks for any advice you may have
Welcome to our forum. I’m not sure if you’ve seen the information on our ‘Care for a Cuppa’ sessions, we run them every Monday. It’s a great way to meet other carers who are in a similar situation, support each other and share tips. There’s no pressure to share anything you’re not comfortable with. We also run Share and Learn sessions also on the link attached.
It would be great to see you there, here’s the link.
with best wishes
I’ve recently joined the forum too and going through a very similar experience but with my girlfriend. The medication for her has a lot of side effects- she’s on Escitalopram and Aripiprazole but she was sectioned three years ago and appeared to make a good recovery like your daughter. Perhaps the side effects may be contributing to your daughter not wanting the increase her dosage? My girlfriend always complained about having a bit of a foggy head but this was far better than being in a state of psychosis (for me at least).
My girlfriend was keen to reduce down the medication until she eventually stopped it completely. Initially she coped well but the next challenging event she had to deal with in her life - her sister moving 200 miles away/possibly COVID and the joys that brought to us all - caused a massive relapse and she’s now back in a psychotic state and it feels like we’re back to square one of trying to get her to take her meds, with the help of the community and crisis teams.
It’s great to hear that your daughter is taking her medication, even if at a smaller dose. I guess you could take this as a small victory as a little dose longer term maybe enough to help her function semi-normally.
I think as carers we always want our old person back in their entirety. I’m not sure about your case, but in my case that feels like a big ask right now and I’ve had to realign my expectations. I now hope she can remain happy, focused and get enjoyment from the things life throws at us - laughing, smiling and bringing up our two daughters.
My girlfriend also has delusions that she genuinely gets comfort from - erotomanic delusions where she thinks celebrities are in love with her. It’s bizarre being the third wheel to this I’ll be the first to admit, but the point I’m trying to get across is that I guess it can be hard for people to come back to ‘reality’ at times when they’re getting comfort from things that we don’t see and understand that are real in their world.
I genuinely wish your daughter a strong recover and feel for what you’re all going through. I hope she’s able to get back to herself in no time.
Thanks Ian, your experience has been useful for me.
I think your point around adjusting my expectations of getting her back to how I want her to be, is very valid. I need to value how far she has come, without aĺl the symptoms vanishing. The voices appear almost non-existent to us, but I think she still hears them. Rather than feeling negatively about this, I should appreciate if she is still hearing voices, they no longer appear to bother her. She is functioning quite well now, despite being on the low dose of medication and declining any therapy.
My concern is, if in the future, like your girlfriend, she faces periods of more stress, she will have a relapse. If she had the therapy it may equip her with skills to cope better
You sound that despite the challenges, you have a great insight into the issues your girlfriend faces and are a great support to her