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Wednesday 13 May 2015

11 ways to help a loved one in a psychiatric hospital


It's been a while since I wrote a blog.  My last hospital stay was not voluntary (it never is but this time more officially NOT voluntary) and very difficult.   I couldn't face thinking or writing about mental health after that, but recently after talking to friends I thought it might be useful to write a list of things that family and friends can do to help when a loved one is in a psychiatric hospital or ward.  There are things people did for me that really helped make my stay easier and I'm eternally grateful to them for that and it's important to note that the situation and needs can be different than a medical ward.  Also in my experience a stay in psychiatric ward tends to last a bit longer than a typical stay on a medical ward.

Brief update on me, since I got out around 7 months ago I am doing much better.  I still have niggles and issues but much less so nowadays. I've currently not heard voices for almost 3 weeks now, which I put down to getting a better sleep now that my bladder issue has been medicated and I no longer need to get up every hour or more for the toilet.  Since taking that medication and sleeping for more than 3 hours at a time my voices have gradually disappeared - something I never thought would happen after hearing them for years!  They may come back I am not naive enough to think I'm cured, but for now it's nice to have freedom from them.  I feel fairly happy and I'm working  hard to stay stable and well.  My diagnosis seems to change at the moment between Schizoaffective and Bipolar and back again so I use the two terms interchangeably.  I don't mean to cause confusion but actually even I'm confused sometimes so it's difficult.  For people who don't know Schizoaffective is Bipolar with psychotic symptoms even when a mood episode is not present.

So here are 11 points about hospital and what you the visitor and family member can do to make it easier!

1.  Visitors

I put this at number 1 for a reason because for me it was the most important thing that people could do to help me when I was trapped there.  When a person is very unwell and first admitted they might not want visitors, or they might only want close family/friends.  As they start to get gradually better they might be happy to see other people.  I was happy to see almost anyone.  Being trapped on the ward made me feel disconnected from reality.  I didn't have passes (allowed time off ward) for a long time and so my world felt very small.  People coming to see me made me feel more like myself again and not just a crazy person.  You might wonder what to talk about, just chat away normally, tell them about your day, what's going on with people on outside, the person will just be pleased to have familiar company.  Also try not to be late, if you say you are visiting at the start of visiting hours try and be there for then if you know its not going to be till later then tell the person or someone else who can pass it on that you will be later.  Your loved one is likely waiting on you and I found when someone was very late I would start to panic.

Sometimes it's overwhelming for your loved one if all the visitors come together in one visit.  For me more than 2 people could be too much especially at the start of my stay.  If you can coordinate with others about when is best to visit, such as the persons partner/spouse or close relative, and if possible you can ask the person themselves via phone or text when is a good time to come.  If visits are spaced out it means the person gets visitors more frequently rather than everyone at once.

Your loved one might be in hospital for sometime and I know from experience that the longer you are in the less visitors come.  People don't mean to forget but they do a little and often patients that have been in the longest have the least amount of visitors.  It can take a long time to get better sometimes so if a person has been in for a while keep popping in to see them whenever you can.  They will appreciate it so much.

You might not be sure if your friend wants you to visit, asking questions such as 'do I know them well enough?'  Don't just sit there wondering, ask!  They might really love to see you but it's rare that a person in that situation would ask you directly to visit.  If you have no way of contacting them directly ask someone close to them.  In my experience people are usually allowed to keep their phones on the ward unless they are in IPCU which is the equivalent of intensive care for psychiatry.  I was even allowed to keep my phone when I was on constant observation which is the stage before IPCU. You get to keep your phone providing you aren't doing anything with it to harm others or put yourself at risk. When I got out from my last stay some people said to me I wanted to visit but I wasn't sure if that would be ok.  I would have loved to see them especially as I was starting to get well.  Understandably you might not be able to visit for various reasons but you can help in other ways.  Send a card directly to the ward (the person can get mail), send a nice text, or email.  Most phones have internet and often there is internet access on the ward or somewhere in the hospital.

2.  Bringing things that the person needs

The person may or may not have had the chance to pack a bag.  It's likely that even if they did pack their own bag it was done in a hurry and things are missing.  Family and loved ones may have the job of bringing practical things in that the person needs.  If you are planning on visiting it could be worth calling the ward, or the persons mobile and checking if they need anything.

Rick used to ask me to pack a bag when he felt hospital was on the cards.  I was always very reluctant to do this because I  hate hospital and I didn't want to go there so packing a bag was the last thing I wanted to do.  When I was on my way to hospital I packed a half hazard bag with stuff for only a couple of nights so Rick had to pack another bag before his first proper visit to make sure I had the essentials.

Think carefully about what you pack.  When packing clothes ask yourself if this is something the person wears regularly?  They are more likely to need and appreciate comfortable clothes.  Underwear, jogging bottoms, leggings, or t-shirts.  Slippers are very handy for walking about ward.  Pyjamas are also important but unlike a regular medical hospital your loved one will be encouraged to get dressed each day.  If there is something your loved one wears a lot then try to remember to pack it.  I always like to wear a cardigan for example so it was nice to have a couple with me.

Toiletries are important, don't assume such things are on the ward as often they are not.  Shampoo, conditioner, deodorant, baby wipes, or perhaps a familiar and favourite perfume.  If the person normally wears make up bring it in.  If they are in a depressed or very psychotic state they may not ask for it but having it there may inspire them to self care.  Often people go into hospital and they are not taking care of themselves, part of being in hospital is about picking this up again.  Although my ward had towels they were tiny and so it was nice to have my own large towels.  A dressing gown is also handy even if person doesn't normally use one because it protects modesty in a ward full of strangers. In my ward the toilet was down the hall from my dorm, that meant travelling in night clothes through the night, a housecoat meant I was warm and covered.  If your loved one is female then sanitary towels or tampons are handy to have as the supply on the ward tends to be cheap and nasty.

Money is also important.  Even if your locked on the ward you can send people to buy things for you and there is a hospital shop that a nurse can take you too.  I used the money I had to buy sweets, magazines and juice.  Little comforts that made my stay that tiny bit more bearable.  When you are in a situation like that the small things start to matter more.  I remember a nurse told me at 9am she could take me to the shop at 3pm when she wasn't going to be busy.  I looked forward to that all day because it meant I could buy myself a diet coke!

Once the person has the practical things that they need you might also think about some other items that will make there stay a little easier.  I found that there wasn't much in the way of recreation and that was hard because it meant I focussed more on my voices or delusional ideas, or when depressed just obsessed and planned ways I could end my life.

Good items to bring in are, iPods, tablets, books (though many people would find reading a book very difficult when unwell), religious items - Rick brought me in a Mala and a small Buddha statue, photos of loved ones, magazines (especially ones with lots of short stories - something I would never read on the outside but passed the long hours on the ward), items of comfort such as a teddy bear from home - but keep in mind that things can go missing so nothing too precious. Gadgets like iPods can be locked in nurses office or little safe in bed-space. Food! Food is always a lovely treat because the hospital food is repetitive and not always tasty.  Fruits like strawberries or grapes (keep in mind your loved one doesn't have a knife to cut things). Chocolate, juice that they like, or their favourite tea bags or nice type of coffee.  Flowers are a lovely gesture to brighten up a persons bed space, and I still have the cards from the people who gave me a card because it helped me so much to remember that I had friends and family who loved and cared for me.  I always appreciated when people phoned me or texted and asked me if I needed or wanted anything.

If your loved one plays a musical instrument bring it in!  They may not be in right frame of mind to pick it up and play at start of their stay but as they get better they will appreciate it.  We had a lady on my ward who played the guitar.  She had everyone up dancing and hugging.  A very rare moment of feeling happy on the ward.

3.  What you should NOT bring to the ward

Think carefully about what you are bringing into the ward.  Anything that the person can hurt themselves with should not be brought in.  If your loved one wants a razor to shave with then ask a nurse if this is ok.  Even electric shavers are a threat as they can be opened up and used to cut.

No medication should be brought in.  Your loved one will be given all their medication they need from the nurses on the ward, such as any psychiatric meds, painkillers and medication for other physical illness.  If your loved one tells you they are not being given the correct medication or that they have asked for a basic painkiller like Paracetomol and it hasn't been given then talk to the nurses.  Be firm if they are missing out medication for physical issue.s I have known this to happen so don't assume that the doctors and nurses have got it right.  Remember you are an advocate for your loved one.

Alcohol is never allowed on the ward.  You may think you are giving your loved one a treat or helping them by bringing in a bottle of wine but in reality you could be making there situation much worse and putting other people on ward at risk.   Alcohol can often interact with many of the psychiatric medications on the ward.  When I was last in hospital a visitor brought a patient some vodka.  After they left the patient drank the vodka and then found and used a blade she had somehow got hold of and slashed her own neck open (she nearly died).  That resulted in her going to IPCU.

Recreational drugs, illegal or legal highs, are never ever a good idea.  I have a very liberal attitude towards most drugs but a psychiatric ward is not the place for such things.  Those kinds of drugs tend to make most psychiatric conditions much worse.  When I was on the ward these drugs were everywhere, I was offered them many times.  I saw people do crazy stupid things on drugs and prolonging their stay because of them.  If your loved one is addicted to something and going through withdrawal then talk to a nurse rather than bring in a drug.  Maybe now is a time to be treated and come off something like that?  Sadly when people are very unwell mentally they have a harder time making wise choices for themselves so if such things are on the ward there is a temptation to try them.

If your loved one is at risk of trying to hang or choke themselves they may be very limited in what they are allowed to keep with them.  In such instances, things like phone chargers, house coat ties, shoe laces, are all kept in the nurses office and given when supervised.  If your loved one starts asking for extra phone charger or shoe laces then talk to a nurse before you hand it over.  If you have a bad feeling about something then check with a nurse.  Your loved one might protest but checking could save their life.  Please remember people can and do die because of mental illness.

4. Anger
You may feel angry or have mixed feelings about your loved one being put in hospital.  Them being away may greatly inconvenience you or be hard on others.  It is never ever helpful to show this anger to the person who has been hospitalised.  Guilt trips only serve to make your loved one feel even worse than they already feel and may even fuel their mental illness.  Sometimes mental illness is hard to understand.  Why can't the person just snap out of it?  Think logically out of their psychosis?  Stop being manic?  Start taking care of themselves?  Stop threatening to kill themselves or trying to kill themselves?  I can promise you, and I have first hand experience with this, your loved one does not have control over their mental illness anymore than someone with a physical illness does.  They did not deliberately get themselves put in hospital and they are not having some kind of holiday in there.  Being on a psychiatric ward is very difficult.  You're trapped there and you are away from everything familiar and everyone you love.  Sometimes the people around you are so unwell they are scary and threatening.  You may hear about moments of fun, of laughter or joking and this may make you more angry thinking they are obviously having a great time.  There are moments of fun and laughter even in the most dire situations because human nature tries to find a way.  People want to relate to each other and heal.  Those moments are far rarer than the moments of isolation, desperation, fear, loneliness, claustrophobia and mental pain.  Making your loved one feel guilty because you heard them laughing as you came up the stairs to visit is NOT cool.

Do not tell your loved one that they are not allowed to go into hospital if things get bad, or that they better not let that  happen, or guilt trip them in anyway if you start to realise that hospital might be on the cards.  That is as silly as telling someone with a serious infection that there infection better not get any worse because you don't want them to go into hospital!  Telling someone or implying to someone that they shouldn't go into hospital actually makes the risk of suicide higher because they are less likely to ask for help and will feel like they are just a huge inconvenience and people are better off without them.

5. Other patients

I'm going to be honest here.  Other patients can sometimes appear very scary and very unwell.  I'm sure I have appeared this way to other visitors in the past.  You may be horrified that your loved one is sharing a space and dorm with people like this. What kind of influence will they have on your loved one?  Will they become "friends"?  Is that healthy?

What you need to remember is people who are in hospital because of mental health are people too.  They have a life outside the hospital and they have wants, needs, desires and talents.  Even if at this point they appear to be unkempt, crazy, slutty, loud, or deranged there is a very good chance that when they are well they do not appear like that.  I have found that the people on the ward who get better the quickest are the ones who come out and talk to the other patients.  The people who hide in their bed space and spend most of there time alone are usually in for longer periods.  It's surprising how much some human contact and empathy can help.  Other patients often understand what your loved one is going through more than anyone else.  Judging them based on their mental health says more about you than it does about them.  If you see someone acting in a strange way on the ward when you are visiting don't stare, focus on the person you are here to see.   There is a good chance that you will see the same person in a few weeks time and they will appear totally different.

One of the really touching things my Mum did last time I was on the ward was to bring in biscuits and chocolates to share with everyone (not just me) people really appreciated that and looked forward to her visiting because it meant a nice chocolate biscuit.  I was so proud of my Mum because she spoke to other patients and she treated them with kindness even when they where acting bizarre or it was clear that they where really in the grips of there mental illness. 

It is very likely some friendships and bonds will form between your loved one and other patients.  It's up to your loved one who they keep in contact with after they leave the hospital. Rest assured it's rare that those friendships will have a negative impact on your loved one and if it appears to be the case nurses would intervene.  When they are well enough to leave hospital they can decide if they want to keep contact and they also have a choice to carry that on if the person is to difficult to be friends with.  I believe as much as possible it should be the persons choice what to do about keeping in touch with hospital friends. 

6.  Taking your loved one off the ward

As your loved on starts to recover the nurses and doctors on the ward give out a privilege commonly known as "passes"  sometimes passes start with the patient being allowed to leave the ward accompanied by a family member or friend.

You need to feel comfortable doing this.  It is a responsibility and you should feel that you can cope with that.  If you don't feel comfortable do not be afraid to say no, or "not this time"  If you do decide to take them off ward make sure you know exactly how long the person is allowed off the ward with you as they can get in trouble if they are late and may lose future passes.  The police can, and are, phoned if the nurses think the patient has been out too long and may be at risk.

When I started getting passes I was still in a fairly bad place mentally and so I asked to go to a shop and tried to steal some Paracetomol so I could overdose with later.  I'm not proud of that but I'm mentioning it as something to look out for.  Anything they buy in a shop should be safe to take back to ward.  So don't let them buy anything you wouldn't bring onto ward and if they insist then inform the nurse on return.  If your loved one runs away when out on pass just phone the ward immediately (you will not be in trouble).  They usually give you a number just in-case.  Don't waste time looking for them the ward will deal with it usually by contacting the police.  Don't worry your loved one will not get a criminal record for simply running away they will just be brought back to the ward.

7. Voluntary or Involuntary

There are two ways to be admitted to hospital, to go in voluntary of your own accord or to be there involuntary by being sectioned under mental health act.  The type of person who feels angry at a loved one for being in hospital might feel even more angry to be told that they person is there voluntary.  I want to make this clear there is no such thing as voluntary its all semantics.  I've been classified as a voluntary patient and I have been sectioned involuntary, and I have been both within the same stay but on all of these occasions it was never really voluntary at all.  For example I was unwell, very depressed and psychotic, and a suicide risk.  I had slashed up my arms and had no real insight into what was psychosis and what was real.  My CPN (Community Psychiatric nurse) said to me that she felt I needed hospital and because I hate hospital I disagreed and said that I did not want to go and would not go.  She then said that if I did not go she would have me sectioned under the mental health act and would send round the police to take me to hospital if I did not comply.  What choice did I have?  Of course I went to hospital.  When in hospital many times I would ask to leave and then I would be told that if I did I would most defiantly be sectioned, so I would back down.  When I did challenge them and 'called their bluff' I stood at the locked door of the ward (you're on a locked ward whether you are voluntarily or involuntary) and I demanded they let me out.  They tried to persuade me to come back into the ward and I kept demanding they let me out.  I was dragged back upstairs to the main ward, restrained, and temporarily sectioned. Then later that day my psychiatrist came to the ward and officially sectioned me for a further 28 days (note the events of this are cloudy in my mind so its a vague memory of what happened).  I was never really voluntary.  Ironically once you are sectioned you are allocated a mental health officer and you are allowed to challenge your section legally.  If you are voluntary and only staying because of the threat of sectioning then you have no such right.

Even sadder is the fact that there are some people usually with depressive type of illness who are at the end of their tether who go to mental health assessment and actually ask to be put on the ward.   Usually they are turned away. It's actually fairly hard to be admitted when you want to be admitted.  There simply aren't enough beds so you have to be considered very seriously unwell to be given a stay.

8.  Odd behaviour

Your loved one may not act in a way that you are used too when they are in hospital.  They may do or say things that are out of character.  For example when I am manic I can make inappropriate sexual comments and advances towards people that I would otherwise not have this type of relationship with.  I may seem rude, or have ideas that are very strange.  I had a belief that my partner was the Buddha and when unwell I have had many strange ideas that I have believed 100 percent and other people have found strange and hard to deal with.

When depressed I will talk a lot about wanting to kill myself. I might ask a visitor to help me do this such as bringing me things onto the ward that I can use to hurt myself with (you should never comply with such a request).  I may talk back to my voices openly without realising that this is odd or that other people can't hear them.  Because of voices your loved one may believe they have had conversations with people that has never happened.  For example I often hear my partners voice as one of my voices when he is not there.  In hospital I had a long conversation with him about all the things I needed to bring from home for me onto the ward.  Clothes, shampoo and other such items. When he arrived at visiting time he had none of the items I requested and I was really angry because I really needed my things.  He had to point out that we hadn't spoke on the phone that day and so I had been talking to a voice in my head and not a real person.

It's not easy to be with someone when they are in this place.  It would be easier to say ok I'm not coming back till they are better but actually being there during all of that is very helpful.  Familiar people (at least to me) are like little anchors to reality.  Mostly my visitors would divert the conversation if I got too involved with my delusions or suicidal thoughts.  For me it's important that people don't go along with what I'm saying and instead talk about things based on reality.  Ask about the routine on the ward, tell them what happened in your day and just be there. Let them know that you care and that you love them.  The person shouldn't be reprimanded for talking about suicide or delusions.  Accept that this is just part of the illness and that it's not permanent.  Let them talk but don't encourage them to delve deeply, never make out you believe what they believe when its clearly not true. This is very unhelpful and makes things worse.  Most important is to let them know that you care and want them to get better and be well again.

It may also be the case that you turn up to visit and your loved one appears perfectly fine and its hard for you to even understand why they are in there.  Sometimes I would somehow pull it together for a visit and must have appeared ok.  Things can and do fluctuate especially as people start to gradually get better.  Also it can depend on what medication a person has taken prior to visiting.  If I had my PRN meds (Chlopromazine and Lorazipan) before visitors arrived then I may look a little doped on meds but actually I wasn't as erratic externally.  It's also important to note that your loved one might not need this medication when at home and it might alarm you that they are taking something like that on the ward, but when on the ward your loved on is acutely unwell and this type of temporary medication can be very useful short term till things are back on track.  It is NOT appropriate to interfere with that or tell your loved one not to use a PRN med if a PRN has been prescribed.  By doing so you are making recovery take longer and making your loved one suffer even more distress.  If you have a problem or concern about what medication is being prescribed the more appropriate action would be to talk to a nurse or the persons psychiatrist.  Remember medication is reviewed regularly by the doctors.

9. Constant Observation

When a person is very unwell on the ward and is at extreme risk of hurting themselves or others then they may be put on something that is called constant observation.  This means that a nurse or, if needed, two nurses will accompany the person wherever they go on the ward.  It is unlikely if the person needs this that they will have passes or be allowed of the ward at all.  Being on constant is not easy on the patient.  It means you are allowed no privacy.  A nurse comes to the toilet and shower with you and a nurse will watch you sleep.  They basically follow you everywhere and you are never alone.  When I was put on constant I didn't fully understand why and that made it more difficult and frustrating. 

As a visitor you might find it strange to have a nurse standing over you or nearby when you visit.  Please don't let this put you of visiting because your loved one may still very much appreciate a familiar face.  Just go about the visit as you normally would.  Depending on what kind of constant the person is on they might even get some time away from a nurse when you are there and that will feel like a huge relief.

Some nurses on constant are really friendly and will talk to you and make you feel comfortable.  Others will say very little and things will feel very uncomfortable.  Sadly in my experience I had a couple of nurses say inappropriate things this time.  For example when I said that I didn't feel comfortable with someone standing in shower room with me she responded with "Well you shouldn't have got yourself put on constant then." I didn't even fully understand why they put me on constant and so that comment made me feel dreadful.  It's very obvious that having patients on constant puts a strain on the nurses on the ward, and I could easily pick up on this, which reinforced my belief that I was a horrible worthless person and should just end my life.

10.  Nurses and other staff

Not every nurse is nice.  As much as I would love to say that they are all wonderful and helpful and full of compassion and empathy it's sadly not true.  There are good and bad.  I had some really helpful nurses on my ward who I felt I could talk to and be comfortable around and then I had others that seemed to make things a lot harder for me and other patients.

I complained to visitors at the time about how I had been treated by some nurses and because I was so unwell I think my visitors just assumed I was taking things the wrong way.  I'm better now and capable of looking back and I have to conclude that, at least with some of the things that were said or done to me, there where times when I was not treated in an kind or respectful manner and I witnessed other patients being talked down to or neglected.  It is especially difficult when a nurse is nice and friendly to a persons family and then when visiting stops they become a different person.  Please listen to your loved one if they tell you something is not right on the ward.  You are their advocate and they are relying on you to help them.  There is very little power to the patient when they are in hospital.

To give an example I was feeling very suicidal at one point during my stay and decided I could maybe try and talk to one of the nurses.  I had an opportunity to talk to one when he was giving me meds.  After I told him I felt a strong urge to end my life his response was "don't even go there again." The nurses are paid to be there to talk to us about things like this.  I was actually reaching out rather than holding it all in which is a sign for me that I am recovering. His reaction set me back and just made me feel like I couldn't talk to anyone again, which resulted in me feeling even more suicidal.   

Another example is one I'm not proud of, but think its important to share.  I tried to kill myself on the ward (I won't say how because I don't think its helpful to give people ideas), it may not have worked easily to end my life, but it definitely had to ability to really hurt me.  I had my own room at this point and so I did this in my own room away from other patients.  A young student nurse walked in on me as I was doing it and was able to stop me.  I was then told to go and sit in the communal area where nurses could see me.  There were other patients around.  An experienced nurse who obviously had heard what happened came marching up to me and said, "Well that wasn't very creative was it".  I didn't even realise at the time how inappropriate a comment like that from a nurse was.  As I got better I was able to see that this is not a respectful or dignified comment. nor was it helpful.  He was mocking me.  If you know a person is suicidal, has tried suicide or self harm, please do not mock them.  Don't assume they are just attention seeking.  It is hell to feel so bad that you want to die, and people being unkind on top of that just makes it extra hard.

11 Discharge

Depending on how long you have been in, and sometimes it doesn't have to be more than a few weeks, discharge is not always an easy thought.  It's rarely the case that a person is completely well when they are discharged.  Usually it's a case of the person not being a danger to themselves or anyone else, and able to self care enough that they can go home.  They may still have depressive symptoms, they may still be hearing voices, it's not a case of being completely well and back to normal for most.

It seems from talking to people that discharge happens in different ways.  For some it's sudden, for others very gradual with lots of over night passes.  I prefer a couple of over night passes, then discharge. I don't like to draw it out, and my doctor seems to agree that for me that's best. 

Coming home is difficult because for weeks, or maybe months, your loved one has not had much responsibility, either for their own care or for the care of others. There has been support available 24/7 and the hospital routine tends to be very rigid and people get used to that.  Go easy on your loved one, they will need a few days, up to a couple of weeks, to adjust.  Help with things like cooking and tidying, going shopping, and other everyday tasks.  If you live with them it helps to have things tidy and organised, so they are not overwhelmed when they get home.  The easier it is for them to adjust slowly, then less chance there is that they will have to go back in again soon.  If they have children make sure they are getting breaks from childcare, and time to themselves to sleep and rest.  Support them along to appointments and be involved with their nurses/support workers, or whoever else is involved in their care.  Remind them that they should take medication.  The more proactive you are to help, the easier it is.  I am very lucky that my partner, and the people around me, help a lot when I am discharged.  I have Rick who always makes sure the flat is nice and tidy, and he is very proactive in my care and staying well, and my Mum is brilliant for taking me out for shopping and having company through the day.

I hope this blog helps even one person think of something they can to do help their loved ones.  Partners, husbands, friends and family, you all have so much power to make it easier and less scary.  When I look around me at the people I know who have mental illness it's very often the people with good support who do the best in the long run. 

Feel free to write any comments of anything you find helpful from your experience, or your loved ones experience, and also I am up for suggestions for future blogs.

Peace and love,

Jools

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