Friends, Family & Carers Forum

[BrokenHusband]

Hi All,

i have been with my wife for nearly 20 years. For the most part of this time, she has been on medication for depression. My question is, should I be included in her Drs visits,hospital visits? She has always kept these things secret from me and I believe she has more than depression e.g. Bipolar or maybe even schizophrenia but without being able to talk to her professionals, I can't get her symptoms across and I don't believe she is honest with her doctors. Does this sound familiar to anyone else?

[NikNik]

Hi @BrokenHusband

Welcome to the Forums.

It's such a good question that you ask.  Many are unsure of much they can be / should be involved with the treatment of their loved one. The answer is quite different to everyone - but I'm sure you can get some advice through other members' experiences.

I think some members will be able to share their own experiences with this - though I have one question that might help others respond - Have you talked to your wife about joining her in her visits?

I know you mentioned that she tends to keep things secret, but I didn't want to assume that it meant that you had already approached the topic with her.

Welcome again - I'm really glad you found us.

[BrokenHusband]

Thanks for the welcome NikNik. I have asked many times to be included/involved with her medical appointments. I guess what I'm asking is, whether this is 'normal' behaviour for people with mental illness to not want their loved one with them? She spent 5 weeks in a mental health clinic and I did not even meet her treating practitioner. I would have thought that there was a duty of care to let the partner know of what's going on especially when a young child is involved. Sorry for the babble but I'm struggling for clarity at the moment...

[Appleblossom]

I am not sure about duty of care legal issues but did you try to speak to the doctor in the mhu?

One to one appointments have a different contractual setup ... I think

... is relationship counselling an option?

[Mal]

G'day Brokehusband, I am in a similar situation but not as bad. It's taken years to work through my partners anxiety problems, I used to try to fix her, that led to fights and an eventual break-up before reuniting with a better understanding, tolerance and acceptance of each other. I have been welcomed into a number of medical appointments, while others I just have to wait outside, but I'm always there to discuss what happened and what was said.. I think it's a compromise, of being involved but not taking away the patients sense of control - It is very frustrating being the partner or carer in this position, trying to keep communications open and friendly is what I've found the most helpful thing to me - And accepting that we can't fix the situation, just help as best as we can. All the Best to you both..

[lindash64]

I am in a similar situation with my adult son. We have been seeking treatment since he was 14- he is now 25 years old. I am exluded from his medical and psychiatric discussions as he is an adult. He lived at home until 3 months ago when a particularly nasty incident forced him into a psychiatric ward and alternate accomodation was needed. I feel really angry when my concerns at the hospital are dismissed - especially when he is paranoid and dellusional. I also suspect schizophrenia, but on his last hospitalisation- l was told by the psychiatrist (who had seen him for all of 30 minutes) in the hospital that l had no idea what l was talking about. I also know my son lies to the so called professionals. I have argued until l am blue in the face and have got nowhere. I really hope you have better luck than l.

[Francis]

Our son is 24 and we have been involved in his treatment the whole journey. Including discussions on the phone to his case worker after her weekly visits and from the psychiatric doctors in both the public and private system. We often sat together as a family with her and discussed things which was ok with our son. Whilst he always had confidential appointments with his psychiatrist at the hospitals etc we have always had communication with them to keep us informed of his progress and treatment plan. This has enabled us to tell our side of the story and given the health teams a better understanding of his behaviour and habits at home. I think it is critical for partners, parents and anyone caring for a loved one to be involved. We have to be so we can ensure optimal care and support is given. I have only ever been involved with hospital systems and community home care services but have managed to be part of his journey. I must say that at times if we werent involved things would have got worse at times instead of better. I have always expressed to medical professionals that at the end of the day we are talking about caring for a human being whom at times is unable to care for themselves, make decisions or remember to take meds and attend appointments. I also believe that legally you have every right to be kept informed as a carer. I was given this information by a carer consultant at a victorian public hospital. My advice is to understand your role in the process and express your need to be informed for the persons best interest. Remember you do not need to know everything about the treatment but just enough to give supportive care to assist in the recovery process. I know what meds my son is on and basically thats all. I have observed his anxiety, psychosis, ptsd symptoms over the past 5 years and have learnt when to speak up and at times put my foot down and intervened when he was really bad as he knows what the outcome is if he doesnt take his meds, sleep and eat and get back on track to some normality of daily self care. We are on our own now and just get a repeat from the Local GP until we link him in with a local psychiatrist. I suppose when that happens I will just trust my son and ask how he went and monitor his progress. I Knowledge is power and we just need to use it constructively and compassionately.

[Tilda]

Hello, #Brokenhusband,

Thank you for your contribution and it is a very important question.  I want to directly respond to your question 'is it normal for people experiencing mental illness, to not want a support person at medical appointments'.  I think this is very complex and it does come down to the individual, the relationship and their perceived reason for your involvement.  I have needed to attend appointments with my Mum who experiences schizophrenia, as she is now living with me and my family and I have very young children.  It is absolutely necessary for the smooth running of our home and the safety of my children that I am in the loop regarding her treatment.  I have approached the subject with her from that perspective as well, that I need to know that she is receiving the best possible treatment, that her medication is correct and anythnig I can do in the home environment to make her life stressfree and enjoyable.  So I see as important and valuable for everyone involved.

I hope this helps.

Tilda

[Appleblossom]

Your post @Tilda was very clear and good ... and so much depends on the external issues surrounding relationship ... dependancy and responsibilities etc.

I wish I had that level of connectedness in the community for me when I had to deal with violent or insistent and deranged thinking in my family ... for protection of myself ... for my siblings ... and then later for my children.

I am trying to establish a link with Carers Vic ... so that I at least have some sense of what is acceptable.

[CherryBomb]

To add to @Tilda's points, I also see agree that it's a very subjective experience for a person to want/not want their loved to attend medical appointments. There can be many reasons for this. @BrokenHusband has your partner mentioned why she does not want you there?

From what @Francis @lindash64 and @Mal wrote, it seems like it can take some time, negotiating and compromising on how much level of involvement you can have. Did this take some time to achieve?

@Francis you mentioned that you connected with a carer consultant, can I ask how did you find out about them? How can other carers find a carer consultant?