Disabled and carers

I have been a carer.
I cared for my husband for 3 years before he died of Motor Nuerone Disease. For me being a carer was rewarding but very tiring. It was a choice that I made in the beginning, not knowing what it would entail. MND is a disease that robs the person of his body but not his mind. My husband was totally dependant on me for everything, from personal hygiene to scrathing his eyebrow, to crossing his legs and uncrossing them, to getting the ant that was crawling up his arm, to being his voice when he had to talk. He was not able to do anything, only think.
For me it was a reward as I was able to give him all the comfort and love he deserved at home, and he was able to die at home beside me which was his wish. I would not have changed any of it.
It was physically and emotionally draining and had an impact on my body and still carry some of the effects today, 5 years on. It was a 24hrs 7days a week job that didnt leave any time for myself. But we did it and got through it. In hindsight there were some things I could have done differently, like ask for more help.
So if any one out there is caring in the same situation, ask for all the help that is available and put some of your needs first, as they as just as important and if you dont you will go down quicker.

As some of you know I lost a leg in a car accident recently. No need to cross them anymore Mish Mash but I sure feel the need to often. It takes a special person to be the carer. My heart goes out to you for your loss. Just think of all the things you gained from it.

Thankyou Macka.
Yes I learnt a lot from my experience. I learnt about life in general. The whole experience changed my outlook on life and what is important to me.
One of the many was unconditional love for a person. I knew my man for only a year before he was diagnosed. We were married 18 months into his illness and he died 18 months later.
As you can imagine, starting a relationship, and trying to continue on with life, knowing what the outcome would be, was very difficult. No matter what you did the outcome was death.
To sit and watch this man go from a muscle bound seaman and bike rider, to muscle wasting human, who could only sit, was not only difficult for but for him. He so often thought of himself now as a blob, not a sexual human being. To me he was the same person, the body is only the packaging. Even though I told him this, he still saw himself as he saw himself.
So many times, I could get lost in the role of carer, always making sure his caring needs were met, that I forgot that I was also his lover and wife.
To be honest, sometimes my attitude was ‘ just something else I had to do’. After doing a lot of things in the caring role, I found it very hard to change hats, so to speak. I then had to realise that this man will not be with me forever. Everyday we lived with that. what was more important?
I had to change my attitude. What more could I give to this man than myself. To fulfil that spirtual connection that we had.
It is so easy to forget that people, no matter what their disability have need to be met. Sometimes, it can be difficult for wives or girlfriends to remember this when taking on the role of carers. You can lost in all the nursing, that not only you forget yourself but what is most important. That is why I say if there is help out there grab it, and that way you are free to just be there as a wife or girlfriend, or lover.

I have tried to carry what I learnt from all of this into my life, not always succeding, but I try. I went onto be a personal carer as a job with a nursing srvice and a respite centre for disabled. Always trying to put a lot of my past exprerience into practice. Eventually I burnt out 12 months ago, and have taken the 12 months off to recover physically and emotinally. Today I am looking for employment in a different field.

One Day At A Time.

Iam a personal carer and I never really thought about becoming part of this profession until 3 and a half years ago when it just fell into my lap. I was asked if I would help out with a few shifts due to staff being away and sick. I turned up for work on my b/day, and was thrown into the deep end lol I either learnt to swim or sink, as it turned out I learnt to swim very quickly and it never ceases to amaze me what you learn each and every day about not only the care of different ppl but how they think and feel and what they have to teach us. I never thought it would be possible for me to ever enjoy such a job as this but the rewards are never ending.

Wow I really wish I had seen this sooner, I met my partner almost 13 years ago, six months before his car crash, we fell in love, but he was married and so was I. We finally got together just over a year ago, he was very aware that his disability could effect how I felt about him, we discussed it at length, in many hours of phone calls, before we saw each other again, after a 10 year gap. For me, nothing had changed, we live 275 miles apart, and see each other only once every six weeks or so, to ease both of us into our life together. He has never wanted his partner to be a carer, but obviously there are times when the care agency people are not there, and things need to be done, and as I have always told him, I wouldn’t do anything I didn’t want to, so, the catheter bag might be full, I empty it, he is in bed with a pressure sore, and hates to have a beard, I give him a shave, he doesn’t trust anyone but me to do it anyway! When I look at this man, whom I utterly adore, I see him, not his disability, not his wheelchair, just him, the same man I fell in love with all those years ago, and while I know to ask for help when I need it, I also know there is nothing I wouldn’t do for him. All it is really is the boundaries of looking after each other are slightly different in our relationship, than in others, but that’s ok with me, it works, he loves me to my very core, just as I am, a mouthy, strong-willed, caring woman, and I love him, willful, independant, and over-protective, and stubborn as hell, and if he wasn’t all those things he would have died in the car crash….