My husband

He can be sweet, caring, has a witty sense of humour, he’s playful, cheeky and generous. He’s very easy going and you can talk to him about anything.
He can also be very opinionated and can come across as very arrogant. He always thinks he’s right (well, he’s male!).

He’s a very strong person. He’s experienced a lot, has been through a lot … and has managed to come through the other side mostly in one piece.

But all in all he’s one of the loveliest people you will ever meet.

On the rare good days he is still this person. But since his health problems began those good days are becoming few and far between.


This angry, arrogant dick is the complete opposite of my husband. He’s very aggressive and always wanting a fight. Never listens to reason and is very good at seeing your weak points and turning them against you. He’s the most spiteful person you will meet. He can be violent, like hitting walls, bashing furniture and throwing things (like cups and glasses at walls, etc). I should make it clear though that he never has and never would hit a woman.

I’ve only know him for 16 years, but my husband has been living with Rob since he was about 18 (about 22 years). He first came to live with my husband about 6 months after his first motorbike accident, which included a head trauma.

He hasn’t always been called Rob. When my husband was younger, Rob would normally come out to play after several drinks. Back then my husband would just refer to him as The Rottweiler. He would fight anyone that annoyed him, wouldn’t back down from anyone no matter the size, or number(!) and he would get my husband in to a LOT of trouble.

But the last time I saw Rob properly was at the beginning of the year. He hasn’t been around much since my husband’s health has declined. In some ways this worries me because it could mean my husband is losing his fight and drive …. and hope.


In my last blog I spoke about my husband becoming like a child. When my husband becomes like this we call this person Rose. My husband used to get junk mail addressed to Rose, so when this started happening to him we both agreed to nick the name. My husband gets very upset and embarrassed after Rose comes out to play and when he’s himself again he always says “I’m acting like a bloody little girl” – hence Rose!
She’s a very frightened child, gets scared and cries and even talks quietly and in struggling sentences … just the way children do when they’re scared and upset. So I will talk to her just like you would to a child and give her hugs and make sure she knows I won’t let anyone hurt her.

Once I’ve got Rose calm, I then try and bring my husband back to the surface. This is easier said than done, but I eventually mange to get him back … though he will usually be beaten down version of himself.
While I don’t really mean he has split personalities, to me it’s as if I am dealing with 3 different people. When these changes happen the expressions on my husband’s face look different, the look in his eyes (which have always been very expressive) are very different … and even the way he talks and his tone of voice are completely different.

It may seem strange to some people, but given these extreme changes in my husband’s behaviour, using these names just helps both of us to cope with it all a little bit better.

Some useful links:

The day my husband became a child

12th July is not a day I will forget easily, it was the day I saw my husband become a child and it was also the day of my husbands WCA/ESA ATOS assessment.

This assessment had been rescheduled several times by ATOS, the 1st time was because my husband had requested it be record, then it got rescheduled because the recording equipment was apparently broke. Then when we did get an assessment the lady who was to do the assessment was not medically trained, so she was unable to do my husbands assessment.

So we were sent back home and had to wait for another appointment. Despite what you may have seen or heard not all these assessments are done by doctors or someone who is medically trained.

After months of rescheduling the day of my husbands assessment was finally here, this was a small weight of our shoulders, especially after months of extra stress on top of the stress we were already going through dealing with my husband declining health.

We were lucky enough to have a very good friend of ours give us a lift to the testing centre (which as a sign that says animal testing). Even before my husband got to be seen, he started having problems. He fell twice in the reception area, couldn’t catch his breath and also felt sick and dizzy. I managed to get him into a seat and our friend got him some water. If you’re a carer you will have some idea of how I feel when my husbands gets in this state, for those of you that are not, it’s one of the most heartbreaking things to see someone you love in pain and in a weakened state. You also feel frustrated for them and guilty because it’s them and not you.

During the whole assessment my husband was juddering and feeling unwell and in pain, he was also feeling very anxious. I’ve sort of gotten used to seeing my husband like this, but inside I still feel like screaming, crying and grabbing that magic wand and making him healthy again. But there is no magic wand, so all I can do is be there when he falls to pick him back up, comfort him when he as a panic attacks and just generally be there for him. Has hard as it is as a carer you need to stay strong inside.

During the assessment my husband was requested to walk, he was allowed to use his stick, but I was not allowed to assist him. Well even though my husband was using his stick this did not stop him from falling to the floor. I sat with my husband until he felt ready to get up, this can sometimes be a few minutes, but can sometimes be longer.

The actually assessment was now over, what a relief for my husband and myself, like I said earlier in this blog it’s been a very stressful time for us both. While the ATOS Doctor was finalising some bits before we could go, my husband had another fall. This time he had hit his head and arm on a column and started to have a major panic attack, he was also crying at this point. I can sort of deal with my husband falling but when he gets panic attacks his whole personality changes and on this day he changed into what can only be described as a frightened child. This is the most difficult thing for me to see and deal with, because what I’m seeing is not my husband. I’ve been with my husband for 16 years now and he was one of the strongest people I knew, I mean mentally not just physically.

When I did managed to move my husband away from the column, I only managed to get him near a chair. By this point my husband had become frustrated, angry and started to slash out by thumping the chair and what was even scarier he also started to bang his head against the chair. While all this was going on I was trying to keep calm and doing what I usually do when my husband gets like this. Which is give him soft hugs and encouraging words. This usually works straight away but on this day my husband was so far gone. In the end my husband grabbed me and held me close to him until his breathing became normal again and I carried on talking to him and stroking his head gently.

The more I see my husband change into this other person, the more scared I become that the person I used to know will disappear completely. I hope this doesn’t happen because I fell in love with my husband for being the person he was when I met him.

I’d love to hear your comments especially from other carers.

Some useful links:


Since my husband has got ill, he has been falling over more and more often. Most of the time I’m able to steady his fall, but sometimes he falls so suddenly I’m unable to catch him or steady him. This might sound strange/silly but when he first started falling, it seemed to be on certain days, but it has now become more frequent and is happening nearly every day.

Fortunately my husband has not had any seroius injuries from falling, but this dosen’t mean my heart is not pounding each time it happens and I’m so scared for him. It’s also heartbreaking seeing the frustration and anger  on his face  because his body is failing him. What scares me most is the thought that next time he’s going to get serious injuries.

This week has been an especially bad week. He must have fallen at least 6 times, one of which was while he was at his CBT appointment which was at the doctors surgery. He hit his head on the wall and I thought he had badly injured himself, so I asked if someone could check him over. Because it was lunch time all the doctors where at lunch. The receptionists did manage to get in contact with one of the doctors by phone, but instead of them asking how my husband was or what his health problems were, they asked how old he was. When he heard he is only 40 the doctor said he would check him over, but we would have to wait for 30 minutes ……… Needless to say we left the surgery, rather than waiting. I am wondering if I should put a complaint in to the surgery.