How will I know?

TJ32

Welcome to the online community and I'm really sorry that you've had to find us at this stage in your husbands journey of which you are his travelling companion trying to follow the pathway you have to take.

We spend so much time attending appointments for one thing or another then to be suddenly be told that the treatment plan, the life line, has been cancelled and the system as you have known it has cut you loose and all this told to you by telephone, this coronovirus situation has a lot to answer for.

When you say you that you've been told to ring if you need them that you've been given all the relevant telephone numbers and names of the doctors and specialist nurses you might need to call.

What are you supposed to be looking for can be difficult being with your husband 24 hours a day when each day could see  changes either way in him.

As you husbands medication is under the control of a Macmillans nurse she should be looking for other signs of change that you might not notice.

Unfortunately there is not a guidebook stipulating what is normal in these situations for everyone  the normal can be as you find it, you'll spot things you'll miss things initially but you will soon get to recognise the important changes and react to them as you think and instinct tells you. I can understand that you are petrified and can only give you the old cliche to take every day as it comes and take that day forward knowing that no two days will be the same.

You may miss a visible sign but you might pick up on a comment from your husband which will give the indication that he has noticed a change

As a member of this group you will find yourself surrounded by a great number of very supportive people all standing in your shoes looking after a loved one but will always take the time to respond to any questions or concerns you may have but they are also here to be supportive towards you and give you help and advice, each of the members will gladly take time to have a chat at anytime and that could include the middle of the night so you can come on here and ask questions but we also have another thing they specialist in they allow each other space to rant and rave and let off steam without making any judgement as they all know the importance of getting things off your chest.

Normally I would suggest that you ask our nurses questions on line but as you can appreciate they are quite busy at present but I can offer you another channel to contacting them on 0808 808 0000 Monday to Friday 9 am to 5 pm and ask to speak to nurse and ask them any questions.

Any plans you're husband is making just go along with him let him set the pace.

You are not alone in this the members of the group are sitting in the background silently just waiting to pour their support over you when you need it.

Keep in touch with us.

Ian

CC    

Thank you for your reply, I think this will be my lifeline. I fully understand how overstretched the service is and why no one can visit. To be honest I was fumbling along, dealing with symptoms as they arose but suddenly I'm asked to look at the bigger picture and I worry that I'm not up to it. I want the best possible for my husband, obviously, but I'm afraid of failing him as their treatment is only on my observation and opinion. I know I'm going into panic mode and sharing here will help me to step back and take one day at a time. Stay safe 

TJ32

Hi again

As usual I always have a few ps's

The first one will be echoed by all in your situation

Avoid Googling, it's tempting but can be very frightening and best not to peek. Stick with us.

No one knows your husband better than you and you are best placed to read any changes in his symptoms.

Of course you will find yourself in Panic mode and feel useless, when and if happens, take a step back, take a deep breath, think positive and go back to your husband, remember as you will see changes in your husband he will notice any change in you and you don't want him worrying about you, but having said that you must look after yourself, rest when you can, eat regularly, if you get the chance to do some exercise please do, you don't have to go for a long walk there is a lot you can do on the house sitting in a chair and lastly get as much sleep as you can.

Health professionals are trained to react to observations made by patients and you should be able to pass on the symptoms as you see them, ever wondered why you can be asked the same thing many times but in a different way.

I would like to invite you to join our Carers only forum Group, this is a place where carers only get together and discuss all manner of things and I know you'll be very welcome over there.

Have you contacted anyone one about help in the home and equipment and also any benefits you maybe entitled to, many members have great knowledge of what's available and our financial teams on 0808 808 0000 can give you loads of advice and it's given free.

Whenever you feel down put something down on here and get it out and you'll be surprised how many are like you and will share their experiences with you.

Always here when you need us.

Ian

CC