HELP

I personally think when someone becomes a carer there should be some kind of help offered to you automatically. But it's not and it can be difficult to know what help is out there and most of all where to find it.

I have been my husbands carer for nearly 3yrs now. Our doctor knew I was my husbands carer but at no point did she tell me about any help that is out there for me. I don't know if it was lack of her knowledge of such help or if she just couldn't be bothered.

It was back in May that I was given a leaflet for

 I had briefly looked at their website before but was not sure if they would or could help me. I ended up emailing them and I got a response very quickly, they even told me who would be assigned my case. Within a few days she contacted me and within a few weeks she came to see. Well since meeting her she has helped me and #raspberrytalk with so much and
has helped us get in touch with other organisations and got both me and #raspberrytalk assessments done.

She referred me for some CBT and I had my 1st session this month. She has also helped with so many other things and most of all she's given me support.

Somewhere on the internet I found out about a mentoring programe/scheme for new carers (but can't remember where). It's done through an organisation called timebank.
Anyway, I signed up for it and my mentor is very good, full of advice and her husband has fibromyilgia. So she has an understanding of what I'm going through and what #raspberrytalk is going through too.

I have also been in touch with Carers UK,


who I signed up with at the beginning of the year. There is a lot of support on there too.  If you sign up with them you can use the forums on there, which is mainly other carers and it's amazing how supportive they all are.

I was even part of carers week 2013 and shared my story.
I only found out about them because of using the internet and I'm sure there are other carers that are not lucky enough to have the internet. So how are we carers meant to know about help that is out there?

Something needs to be done about this. So many carers struggle without the help they truly need. I myself have struggled without help or support. This is not good because it can and has effected my own well being.

But what can be done?

 

Same S***, Different Day....

it seems as soon as I start to relax a bit and stupidly think my husband is not going to have some kind of spell ...

... he has a spell! Luckily we were at home and there were other people in the house to help. I just popped to the toilet and while I was gone, Raspberry being Raspberry, decided to "help" by going to the kitchen to start making us all some drinks. I came back and went to the kitchen to check on him ... only to find him half passed out on his perching stool, leaning back against the fridge gasping for breath! Thank God his stool was there (thank you Social Services!)or my husband would have ended up on the floor - or worse still, he could have badly banged his head on the floor or worktop on his way down!

The thing is, he could have been there for ages. I only walked into the kitchen to check on him because I sort of sensed that something was wrong.

This is something I've seen many times before, my husband collapsed with exhaustion, but I can usually get him over to the sofa or the bed before he's completely gone.
This time however, my husband's whole body simply decided it was not going to work anymore. As I was checking he was ok and still conscious he slumped forwards and his whole dead weight fell against me. I couldn't move him and just had to stand there bracing his entire weight on my legs ....ouch!!

Luckily, just as I was sure my legs were going to buckle, my husbands mother noticed what was going on and could see that my legs was shaking with the strain of holding my husband up. She quickly called to my husband's step dad who came running in and rescued us both. As he took my husband's weight he turned to me and said "He's bloody heavy, isn't he!?".

My husband was now completely unresponsive and he still couldn't move either because of the muscle paralysis, but he was still awake because his eyes were open and he remembers it all clearly. No matter how many times I see this happen it still scares me.

A few minutes later my husband suddenly jerked upright on the stool and became semi responsive - almost as if half asleep (or very drunk! lol). We managed to get him to his feet and move very unsteadily into the living room and sit him in a chair. Unfortunately, within a few minutes of him being put into the chair he slumped down and started to have a seizure. I tried my best to keep him safe and keep him in the chair, but as his entire body was flexing and thrashing about because of the violent nature of his seizures, he slowly slid down the chair and ended up on the floor.
I asked his step dad to get some water because I know when my husband comes around he will need a drink. These seizures are very muscular in nature and always leave my husband completely drained as if he's just run a race. He is also usually in great pain afterwards with several pulled muscles.

At one point while my husband was seizing, I looked at my mother inlaw and could see a mix of fear and frustration in her eyes. She turned to me and said "They're getting worst aren't they?".
It's sad to say, but after my husband had stopped seizing and we'd managed to get him back into the chair, I had to tell her that what she saw was not the worst and in fact it was quite a small attack. I held her hand and asked if she was o.k (stupid question, I know!) and told her "I know it's scary to see but he's o.k now".

Typical of these seizures, my husband was now completely back to normal (aside from a few pulled muscles and being exhausted) and I got the pair of them to hold hands ... it was all I could think to do.

So there you go; Same s***, different day ... but at least this time I had extra support and someone to actually help me move my husband (Thank You!!).

I hate that this is happening to my husband. And I really hate to say it, but when he has his spells it's not just him they affect. I'm also drained afterwards, but it's more emotionally rather than physically. I feel selfish when I say it, but my husband says I shouldn't be so silly. He says "of course you're drained. You have every right to be and shouldn't feel bad for feeling like that. I wouldn't wish having to deal with all this/me on my worst enemy!".

Then we both usually get upset, there are "I love you"s and even tears because of "all the pain" we're causing each other ... and it all becomes very slushy, damp and emotional, lol

Take Care of Each Other
Carers Vent

WHO? WHAT?

When you think of someone being a carer most of us will automatically think of someone that has to do everything for the person they care for, including wiping their bum. Some of us will also think of a carer only having to help with physical needs and not necessarily there emotionally and mental needs.

Part of the reason I'm writing this blog entry is because I would like to bring awareness of the different kinds of carers that are out there. Also to bring awareness that carers themselves come in different shapes and sizes ... lol.
But on a more serious note, some carers are children, some are old and some are like me, fairly young. Some, if not most, even have their own health problems.

Most people will not realize that I am my husbands carer, because at first glance it looks like I just help him walk. What they're not seeing is on a daily basis I have to take care of his emotional well being as well as his physical needs (which are more than helping him to walk, I have to help him in and out of bed, help bathe him, assist him getting his clothes on and off, etc, etc). There is a lot more than this I have to do, too much to mention here, but there are other carers that do even more than I have to do. But unlike me, some carers don't have to look after someone else's mental well being ... and like thousands of others this is actually the thing I struggle the most with.
When I first saw my husband have a major panic attack it scared the life out me. But as I always do, I did my best to take care of him and put how I was feeling aside.

So as you can see and if you saw the blogs on carersweek you would have realized that not one carer is the same as the next. I never realized it when I was younger but my nan was my grandads carer I remember as a teenager helping her put my grandads wheelchair in the back of their car. I'm sure there was so much more she had to do for him, but I either didn't see it or realize it.

I have to admit it took me a while to realize I was actually a carer. I even made a list once of the things I thought I did for my husband and showed it to him. He laughed and spent the next 10 minutes adding all the things he could think of! I think this was when I realized properly that I am a carer and not all carers are the same.

When you think of someone that needs a carer you'll probably think of someone in a wheelchair or child/person with severe learning problems. You may or may not be surprised to know that this is not always the case.

There are hundreds of thousands of people out there with invisible disabilities. For example, mental illness. You can't see it but many people with it need a carer. My husband has several neurological disorders which you can not see, as well as mental health issues. He also has arthritis through all his body, but you can't see this ... but this causes him severe pain. His neurological problems cause him a whole host of problems, including seizures, extreme exhaustion, muscle paralysis ... the list just goes on.

There are so many people out there with invisible disabilities that are treated so badly by society in general and are judged because on that certain day there not using their wheelchair/walking stick and are parking in a disabled bay. Just recently a young lady in America was left a note on her car, left by someone who could not see the Cystic fibrosis the young lady has!

When most people see my husband they don't realize the pain and the struggles he has to go through everyday.

Personally I think there needs to be more awareness made of invisible disabilities and the fact that not one carer is the same as the other.

take care of each other
carers vent

MY HEALTH

My health has never been 100% but whose health is? I have always suffered with depression and anxiety, and in the past I have also experienced panic attacks - although nowhere near as bad as the ones @raspberrytalk gets. I was also diagnosed with IBS over 10 years ago.

I am also slightly long sighted and at 5' 3" suffer with shortism, as my husband often reminds me :-) lol.

When I decided to be my husband's carer I never dreamt it would effect my health as well and I also never realised how important my health would be to my caring role.

But last June I was given wake up call. I was feeling a little funny in the shower and went to the bedroom to lie down for a moment. But before I got there I keeled over backwards and passed out. I must of been out of it for just a few seconds but it scared the life out of me and @raspberrytalk.

My doctor sent me for the basic epilepsy test and because that came back normal she then sent me for a MRI on my head. Again everything came back normal, so my GP then referred me to see a neurologist. He asked me a few questions and got me to do some balance tests. He then said I collapsed because of the added stress I'm having to deal with. He seemed very concerned about me and said I needed to find a way of having a break from my caring role. He also said in all his time doing his job he's seen a lot of other carers go through the same as me.

So, how is my health now ..... ?

Well, I'm still on antidepressants and have also been taking Pregabalin for stress induced migraines! Also because I suffer with restless leg syndrome I'm currently taking something for that as well.

I have nearly passed out several times since last year. I was in Tesco the other week and almost collapsed again. I have been trying to look after myself but it's been a struggle. I'm still getting migraines but not as often as I was. the trouble is that when I get them I have to go to bed and have to leave my husband alone in his chair in the living room. I find I can't switch off properly because I'm worried about my husband.

So my health is suffering and I really do need to think of my own health because if I'm not, well how on earth can I cope with taking care of my husband? I need to listen to my own advice. I'm always telling others to take care of themselves yet I don't do it myself. I'm sure a lot of other carers have the same problem. As a carer you automatically put the other person's needs and health before your own but, as you can see, this in itself causes the carer to have health problems. Yes, as a carer you need to look after the other persons health and needs, but you must take care of your own as well.

I know it's hard to do but, as carers, we must because we are also responsible for someone else health. I think as carers we actually need to think of our health first. I know it does sound strange, but it does make sense.

When I get my spells I can't do anything for my husband, which is so frustrating and upsetting as well. I currently don't get any respite as we can't afford it, but I do desperately need some. I have contacted a local charity that may be able to help me with that. We'll just have to wait and see.


take care of each other
carers vent

Are you prepared to be cared for?

So this week is Carers Week and the theme this year is are you prepared to care?

So I thought it would be an idea to write a blog entry about the other side; are people with carers prepared/ready to be care for?

I don't know about other carer's, but I have a small battle everyday when caring for @raspberrytalk. He means well but he does make it difficult. For example, he hates having to use his wheelchair. He'd rather fall to the floor than be in his wheelchair; and when he does fall (as he so often does!), I feel responsible! I don't know why, but i do. I do sort of understand why he hates going in his wheelchair, but I just wish sometimes he would see that it makes my life a little bit easier, as well as his own.

The other day he tried doing some light gardening and ended up rolling down our front garden. I only just about managed to get him back into the house. This is the trouble with raspberrytalk; as soon as my back is turned he will try and do something he can't actually physically do and the smallest of tasks will make him exhausted for rest of the week.

Just before christmas he cut his thumb very badly because he was trying to help me dry some things up. We ended up spending christmas eve in hospital waiting for him to have a small op on his thumb to repair his severed nerve and artery. I really don't want to go through that again......

The above are only a few examples of part of my battle caring for raspberrytalk. I think the reason he's like this is because he's the sort of person that never wants another person caring for him. I'm sure he's not the only person like this. I know when I'm not well with the flu or something I hate people fussing and trying to do everything for me.
I also think raspberrytalk is still trying to come to terms with the fact that he is ill and always will be. He will never be the person he used to be, nor be able to do the things he could before. I know for a fact he finds it frustrating that I have to do so much for him. He has also told me that he wishes that I didn't have to take care of him.

Just recently, we were having dinner with his mother. Raspberrytalk's arms decided to stop working properly, shaking and twitching, and he couldn't lift them. There was no way he could hold his knife and fork, so I had to feed him. Afterwards he told me how humiliated he had felt ... not just because I'd had to feed him, but also because it was in front of his mother. He said it's one thing to be falling apart, but worse to let the people you love see it.
He got so upset by this I held him and told him it's o.k. What else could I do?

CARERS WEEK
CARERS UK