Living with family members who have a mental illness

I'm a mental health nurse (off work atm - complications following major surgery) if I can help in any way, please drop me a pm

Thanks BladeAnnie. At the moment all is well and she is living her life but at Christmas it was, just frankly, awful and we were afraid she might either kill herself or whatever. She was hospitalised for a few days but not long enough because of pressure on beds. She has a family who are all very mature for their age but you have to wonder at long term affects on them.

I feel for you Anna. When you have family members with ongoing mental health problems it is so difficult to be supportive all of the time and when other family members don't understand mental illness and think - "right you had that, got, treated and all is fine now so get on with it" or " you need to let them get on with it, do more for themselves" or "you are enabling them to be like that". Sometimes I feel no one thinks or cares about me, ever. What if I wasn't there? Would anyone actually care? Maybe I'm so tired just now. It's very hard - we do childcare all week - all day, sometimes weekends yet we are lucky to see and be involved with grandchildren when many have not seen their families in a year. My friend has long walks with her DH locally to beautiful places - she sends photos every day - but does not see her grandchildren. But I am so tired - it's 6.45 till about 9pm every day with a 2yo who is now almost 3 and dropping his naps so no rest, no time to do anything for myself. And I feel my own mental health deteriorating. Yes there is still in 2021 a stigma and a feeling of guilt and shame so we all just get on with it! I have worked (as a nurse) with schizophrenic patients and know exactly what you describe and I feel so sorry you have this constant worry and dread and I am worried for the future for everyone especially young people who are struggling within services that were already under funded. What to do - has anyone any idea?

No ideas as we all know funding and specialist, focused, long-term help is what's needed.
And respite. And support for the whole family.

Everyone supporting loved ones with enduring/reoccurring mental ill-health deserves better. So many families stretched to the limits.
Thinking of you.
?

nanna8 I have the T shirt!! Sending you hugs and empathy from someone who’s walked the path. Schizophrenia is dreadful for the sufferer, but the effects are felt throughout the family and I know there are times when there seems to be no respite from the worry and concern.

We have two sufferers in our extended family and at any given time one of them is often very poorly. One lives nearby, and the other (the one that I actually give regular support to) lives in the next county - too far to get to in a hurry. We speak every day and I have to gauge whether to take no action, call his CPN the next day, ring the duty psychiatric liaison team or go full 999 for an immediate response.

Following a recent episode the hospital are currently providing a ‘hospital at home’ treatment team for him in addition to the usual CPN visits; this is because of the risk of Covid-19 in the hospital. It seems to be working very well and for once there is adequate liaison between the different care teams.

Thanks for your support. It helps to share, it really does because you realise you are not alone. Just randomly I mentioned at Christmas what was going on to a lady I know. She hugged me and said she knew exactly what I was talking about because she has a daughter with anorexia. An adult, like my daughter.I am afraid mental health is at the bottom of the pile for funding and I just would like my daughter to have some sort of ongoing support worker to help make sure she has her medication and who knows her case. Not available unless they do something violent or criminal which she wouldn’t, of course.

nanna8 I think that some mental illnesses, such as OCD, anorexia and depression are better understood nowadays and because of that there is (marginally) less stigma attached, but to many people the very word ‘schizophrenia’ still conjures up a ‘mad’ person running amok.

Those of us who first-hand experience know that someone with a schizo-affective disorder is more likely to be a danger to themselves than to others. Somewhere in their broken mind is the person we love and are trying to do our best for - often at great personal cost as your post highlights.

I understand how difficult it is to cope with family mental illness.
Three years into my marriage I became pregnant and the same week my dh was diagnosed as suffering from paranoid schizophrenia. I spent the following 20 years being mother and father to my dc. My dh suffered dillusions and also spent about 20 hours each day in bed. Each day was a mental trial for me as I tried to make things as normal as possible for my dc. Once when I tried to encourage my dh to be more involved in the life of my dc he said...... I'll take more interest when he's about 12.
Dh was university educated but unable to hold down a job. Once dgc started school I took on a part time job in a local office. Sometimes taking my dc to work with me during school holidays as I was unhappy about leaving my dc alone with him. Never sure about what strange behaviour could occur. Dh always appeared 'odd'.

I divorced after 22 years when I could cope no longer. Dc was going to university by this time. To this day I worry about the effect it all had on my dc. We have talked about it often and clearly it had been a difficult childhood where I had been trying to look after dh and dc.
On reflection I feel I should have left when dc was a toddler.

Not when dgc started school. It should read dc.

I would say that the main thing is that she takes her medication regularly to keep her stabilised as missing anti-psychotic medication can only spell trouble.
If she's forgetting/ missing out her medication perhaps a suggestion for it to be given intramuscularly would help ? A word with the GP would be of help if there's no regularity of her medication.

You say " when she takes her medication she's good " which tells me that it's not being taken on a regular basis which is vital if it's going to help to improve her and everyone else's lives.

nanna8 I am so sorry you have this stress in your life, and as you say the ongoing worry of when the next time will be. My DH has been diagnosed with Bipolar and is on medication for this. He has had 3 episodes of mania since I have known him the first some years ago post heart bypass when he spent some time in a MH hospital. We thought then it was just a reaction to the surgery and weaned him off his medication. After 12 he has had 2 episodes a year apart and has been put back on medication and given the diagnosis. We are now constantly juggling with dose as it has made him so flat and disinterested in life. When I looked at online forums the consensus seemed to be put up or get out, very depressing.
Covid certainly hasn’t helped, telephone appointments with consultant and lack of opportunities to get out and about. I have a supportive family and group of friends and my work colleagues will listen to my moans with no judgment which helps. But life at home can be very lonely.
I wish you all the best, hang on to the positives and take support where you find it

Hello Dwmxyg, Our son was diagnosed as bipolar about 2 years ago, before that he was suffering from depression with suicidal thoughts. He has had manic episodes, which are terrifying, and cost him his marriage. He goes on and off medication because like your DH when he takes it he finds no interest or joy in life. I worry all the time about the future, and when it is your child there is no getting out option. Also it seems that he probably got the gene from me , my aunt had this condition, we now realise. Covid hasn't helped, he lost his income. We aren't in the UK, and finding help here is very difficult. I do feel for you

Thank you kittypaws. I am so sorry to hear about your son, thankfully DH has not been suicidal but can “threaten” when manic.
We just have to take one day at a time and take the help that is offered. I do hope your son will find the right balance which will ease your worries.

My son was diagnosed with paranoid schizophrenia aged 20. It began when he was about 16, he wouldn't come out of his bedroom, but no one would believe me for 3 or 4 years. The GP told me he just needed to get on with his life. The psychiatrist told me "people are entitled to be odd" and without diagnosing him sent a nurse round to give him an injection, which made him ill and he thought he had the flu. In the end we took him to the mental hospital (psychiatric unit) and sat in the entrance with him for 4 hours until they agreed to see him. He agreed to go in voluntarily as he thought he had the flu, and they told me he had paranoid schizophrenia, which I knew anyway because I had read everything I could about it in the library. Over 20 years my son was shifted from psychiatric units to half way houses to rehab on different medications with different side effects. he was a very vulnerable adult and was robbed, abused, conned by various individuals who preyed on others. Two others we know off jumped off a local car park, lost to the system. Finally my son was sent to the Bethlem Hospital in West Wickham. This was the best place ever because they not only looked after him but they spoke to me, his mother, as if I mattered. The place was terribly run down. So often the mental health workers told me they couldn't tell me anything as he was over 18 and it was confidential, even though I was the person who knew him best. I became aware of the total lack of funding for mental health, this stupid idea of "getting them back into the community" whatever that means, of the huge caseloads of the social workers, the lack of therapy, the lack of beds, the closure of local units and even closure of a drop-in centre, and some awful comments from members of the public. One man said to me "they're all axe murderers aren/t they"? People seem to think mental health problems are stress, anxiety and depression and don't understand the psychotic illness. My son died in 2014 aged 39. I truly believe that at last he's in a safe place.

Flaxwoven, I just wanted to send you my love and endless empathy. You have been through an unspeakable time. I truly understand as I come from a family blighted by mental illness. It has affected my sister, mother and now niece. God bless your beautiful son, he did not deserve it and neither did you. I am sure he watches over you every minute of every day. You did everything in your power, he was blessed to have you as a mother.

Thank you Sonatina7. Only those who have been involved with relatives with severe mental illness know what it's like. I don't blame the general public. Who would want to know? I do blame the lack of funding, lack of staff, cutbacks, closure of residential units, the reliance on medication and the lack of therapies. They are abandoned into the so-called "community" to fend for themselves. Nanna8, in my experience I have had to shout loudly, write letters, attend meetings, make a fuss, and be made to feel like I was an annoying busybody mother, but it was the only way to get my son any help, as he was unable to help himself. I have a friend whose daughter has schizophrenia and one moment she will tell her mother she hears voices but then she sees the doctor and denies it.

I feel empathy for you all. My goddaughter now nearly 32 has been in and out of the mental Heath system since a child. First diagnosed with ADHD and a mild learning disability she still only really functions at about age 13-14. As an adult she was diagnosed as on the autistic spectrum, depression which is often severe, and borderline personality disorder. She is incapable of seeing any situation from the perspective of anyone except herself.

She has attempted suicide many times surviving often by the skin of her teeth and sheer luck. I have always been very involved and can sometimes make her listen to me when she won’t listen to her mother, my best friend since our childhood. She has been sectioned, spent time in residential treatment, is involved with CPN’s and the home treatment and respite services.

Her mother is at the end of her tether and I can’t help at the moment because of COVID. We both dread the phone call to say she is dead and the local mental health services do their best but it is never enough. I don’t know what the answer is .

This Covid business certainly doesn’t help with mental illness. We are back in lockdown again and, wouldn’t you know it, my daughter has stated with the symptoms again. I feel helpless because we can’t even go to see her. I’m just hoping things will settle down and she will have her medication. I did say on the phone that her family go through hell when she starts rambling on and it seemed to stop her for a while because she really loves her children.

nanna8 It must be so worrying, I feel for you. Does she have a CPN, or fast response treatment team ( the name for them varies) that you can contact? Even during Covid there will be someone you can flag you concerns to. Maybe even call her GP. If someone can get to her and check she's taking her meds, or might need an adjustment it might help all round. I hope she gets the support she needs and you can put your mind at rest.

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