Tuesday, October 03, 2006

Friday

Friday was a very stressful day really. Mr Man had an appointment with his psychiatrist in the morning, who thankfully is a very caring and experienced doctor. This hasn’t always been the case though with the various consultants that he has seen over the years, and unfortunately I think the bad experiences we have had, particularly when he was an in-patient, has left him in such a state that he always suffers high levels of anxiety whenever he has to see a mental health “professional”.

Presently the medication he has been taking is Clozapine and Risperdal, and as previously mentioned he still struggles a lot with the negative symptoms of his Schizophrenia. Also, although the positive symptoms have been reduced dramatically, they are still there. For this reason his psychiatrist, who we will call Dr Hilary, has decided to wean Mr Man off the Risperdal (Risperidone) and introduce Abilify (Aripiprazole). Apparently there have been good results with patients taking Abilify with Clozapine, and Mr Man has spoken to patients himself who have had good results with Abilify alone. That being said, we are obviously still worried about not only the transitional period between the medications, but also whether this other drug will really work for him. All we can do is wait and see.

As the day went on, anxiety levels were increasing for both of us, as he was booked to go into his respite home that night for a couple of nights. I was going away on Saturday, leaving early in the morning and staying over for one night, so I needed him to be able to stay somewhere where he would be safe. Neither of us really like him having to go into respite, but we use it out of necessity, and neither of us have really recovered from him having stayed at home on his own in August when there were no beds. He obviously can’t cope at home on his own, and he wouldn’t cope with the activities that I get involved in while I’m away, so the only thing we can do is book him in somewhere where he will be supervised so that he will come to no harm. He hates being away from home though, so this causes him a lot of anxiety, and it’s really his anxiety that causes me to feel anxious, as I feel so bad for “making” him go there. I dread the moment when I actually have to drop him off and say goodbye; it’s like leaving him at the hospital all over again, and I always cry once I’ve left.

When I dropped Mr Man off at about 10pm the staff were in a “change over” meeting, where one lot of staff finish a shift and another lot start. We were asked to wait in the lounge until they had finished, and were offered tea and coffee which I thought was very nice. However, when the meeting had finished we were confronted by a staff member who was a right grouchy old bag, who complained about my being there, as visitors don't usually stay that late. I pointed out to her that we had been asked to wait there, to which she replied “I know” so I don’t really understand what her problem was. She then said we were expected at 7pm. I have no idea why as we didn’t specify what time we would be arriving, and no one has ever suggested that it should be by a certain time. I had explained to the other member of staff though, that with all good intentions unfortunately “life” happens and that was the soonest we could get there. Being greeted with that didn’t make me feel any better about leaving Mr Man there and it didn’t help to settle his anxiety either. When I spoke to him later on the phone though, he said that she was ok with him in the end. Unfortunately past experiences make me ready for a fight at the first hint of unpleasantness.

After assessing the level of his illness, they will only take him for three nights in a row maximum, although he usually only stays for one or two nights, and all of their “guests” are only entitled to stay three times a year. I wish it was more often, say six times a year, as I’m sure that if he stayed there more often he would become more relaxed about going. It doesn’t really give me many opportunities to get away either, and the last time I had a real holiday (which was only four days anyway) was in 2003 while Mr Man was in hospital.

Unfortunately though even this limited service could soon come to an end, as closure of this facility is on the cards due to NHS cut backs. What we will do then I have no idea, and to be honest I’ve tried not to think about it, although I know I should. I think I may have missed the deadline for writing a letter of appeal, although I shall do it anyway. It’s just sometimes so difficult to put into words how I feel about issues like this, so I suppose that’s why I have put it off for so long.

It's not that I need a break* from Mr Man - why would I? We love each other and we love being together. But I do need a break from the house and the usual routine of things, I think most people do, but I can't go on a holiday with Mr Man like most "normal" couples would. I miss that so much.

*I’ve mentioned Jim before, Mr Mans key worker at the respite home, and how stupid he is. Recently he said to Mr Man that he should think about going in for respite more often, to give me “a break”, and not just when I’m going away.

  1. He can’t go in more often; he only gets three respite breaks a year.
  2. I don’t need “a break” from my own husband, and thanks to that careless comment I had to spend a great deal of time reassuring Mr Man of that fact.
  3. If we wasted respite breaks with me staying at home, we wouldn’t have anywhere for him to go to be safe when I go away.

Where do they find these people?

4 comments:

marilyn's shampoo said...

that last bit made me so tense - i could feel my fists clenching as i read it! what an idiot!

Mr Mans Wife said...

He sure is. But unfortunately I've met worse. When I start writing about all the things that happened in hospital you may find that you need anger management classes!

Anonymous said...

How is your husband doing on abilify? my husband also suffers from paranoid schizophrenia and your blog hit home in a big way. Thank you for writing it , it reminds me that I am not the only person going through this type of situation. I can relate to so many of your posts.
I have 3 children ages 10, 8 and 1 all boys so I am on double duty trying to protect them and him at the same time. My husband's onset wasn't until a year and a half ago but I believe it has had it for a long time.
So far he has been on zyprexa ( made him gain a LOT of weight) Haldol ( made him shake badly) and now he is on Risperdone ( which makes him gain weight and has sexual side effects)

I am just beginning to wonder if the risks medications cause out weigh the benefits,. Yes most of his symptoms are controled with medications but the side effects bring down his self esteem ( which wasn't very high to begin with).Not to mention he has diabetes in his family.

I am thinking of asking his doctor to try abilify but is it any better?
I have lost so much respect from the mental health community over the last year it's not even funny anymore. I have been turned away from hospitals when my uhsband was sucidal . They make you wait hours for a psyc evaluation and when they finally do come my husband puts on a show and says he isn't sucidal anymore and of course he is. It's frustrating to say the least.They just turn you away without a care in the world and it puts a huge burden on family members. I can't leave my kids around him when he is psychotic and yet I can't leave him alone either . It's so hard sometimes.

Mr Mans Wife said...

Anonymous, thank you for your comments. It really inspires me to keep writing when I know that my own experiences can touch so many people.

I think maybe it’s a bit too early to be able to tell if the Abilify is helping Mr Man or not. He seems to be suffering a lot of anxiety at the moment, and he’s feeling very down and worthless, but it’s hard to tell if that is a direct result of the change in his medication as he’s prone to these mood changes anyway. I haven’t noticed him becoming more paranoid or psychotic, but on the other hand I haven’t noticed an improvement in those areas yet either.

I really couldn’t advise as to whether Abilify would be better for your husband or not, as medication seems to be so individual, and what works for one person doesn’t work for another. Also one person could have horrendous side effects with one medication, and yet another person might not suffer so badly with the same medication. Every case really is unique, even though there often seems to be so many similarities with symptoms. If you’re worried about his current side effects, or just feel that his current medication isn’t helping him enough, you could discuss the possibility of trying Abilify with his psychiatrist though.

As for risks verses benefits of medications, I have to say that some of the side effects that Mr Man has suffered have been horrendous. These side effects have to be better than the alternative though. Sometimes the effects can be reduced by reducing the medication, and a good psychiatrist should be trying to find just the right dose for your husband – a balance of optimum benefits with minimum side effects. Sometimes other medications can be used to control side effects as well.

You really sound like you have your hands full trying to care for your husband and three boys as well. It must be very hard for you. You are within your rights to request a carers assessment. Perhaps speak to your husbands CPN or psychiatrist about it. You should be able to meet privately with someone from the community mental health team, to discuss your needs as a carer. It was due to a carers assessment that Mr Man started going to respite three times a year. They have other services available too which, although they weren’t beneficial to us, could be helpful to you.

It’s so unfair that you should be left to care for your husband when he is suicidal. I have had to do this many times, but being on “suicide watch” must be virtually impossible with children to care for as well. If this is an ongoing problem you need to discuss this with his psychiatrist.

I hope the comments I have made are helpful to you. I wish you both all the best.