Medical diagnosis – for two?

When someone gets a new medical diagnosis of a serious long-term condition, it’s not only that person who’s affected. Whether it’s dementia or diabetes or rheumatoid arthritis – or any of the painful and debilitating conditions that come as we get older – it will have a knock-on effect on anyone who is close to them. As their condition progresses, relatives and carers have to adjust too. Many lives might be changed by the diagnosis.

How did your parent’s or spouse’s medical diagnosis affect you? How did you cope? Other Forum users would like to hear about your experience.

Best wishes

SimplyHealth Care for Life team

[Hidden]

I wish I knew how to cope. I am told, 'make sure he avoids all stress' =- great, but who then has to take all the stress? Me! 'Make sure he takes his meds'- he forgets, who has to remember? Me. 'Make sure he is safe when out.' Who has to adjust their day to make sure? Me.

The worse the dementia gets, the harder it is for the family to cope. I worry if I go out, I turn down so many invitations as I can't be sure how he will be on the day - will his mind be 'with us' or will he be away with the fairies? We cannot have our normal holidays as he gets lost (when your partner has been lost in a foreign airport just before the plane is due to take off - that's when you know the definition of panic!).

AND you know it's only going to get worse. My husband has cancer as well as dementia - give me cancer any day, we know where we are with that!

[swarwick in reply to Hidden]

I really do understand what your saying, you whole life is just turned upside down. It's the not being able to plan anything as you don't know if your loved one will have a good or a bad day. I lost my mum once shopping, my heart just sank, it's similar to losing sight of a small child.

Hang on in there and cherish the good days

[pergola]

Back in 2012-13, my husband, Brian was diagnosed with cancer prostate. At first we thought fine, we will crack this but then his PSA went up and up, spread to his bones - metastases. Both chem and R/T were given. It was decided that we should move to be nearer Daughter who would give the support needed. It was urgent to sell the house in which we lived for 46 years. During the period of moving house, Brian's health really deteriorated but we managed to get him to the New Forest where he spent 7 months in his new home, before being admitted to Southampton Hosp. He passed on there. I was sad that I wasn't present but I honestly feel that he wanted it that way.

My health before we moved and afterwards wasn't brilliant. I was on long term antibiotics to keep chest infections at bay. I had to fight to get support in our old home. The GP wasn't very supportive. Promised me a Macmillan nurse who never turned up. It was hard to watch a happy, very active man whom I loved go downhill. When we arrived in Hants, everything happened to give us both support. Access to the local hospice, care assistants and my daughter and son. Brian was a wonderful, patient. He bore his condition bravely and with dignity. It was me who got impossibly tired. I was a retired nurse, and the nurse mode kicked in which meant I could deal with things better. That meant that I automatically distanced myself in order to cope. But we still had chats together. Pain control was difficult - I had to do the 1-10 question often.

2 years later, I supposed I have learned to live on my own, but will always miss Brian like mad. There will never be another person like Brian. RIP

[swarwick]

My mum's dementia diagnosis was just the worst! we were told she had Alzheimer's at 50 years old, the next visit to her consultant we were advised it wasn't Alzheimer's. We were relieved!! 6 months of on-going test etc. to find out what was wrong was difficult but at least with thought it isn't dementia only to be diagnosed again with Alzheimer's, this time they were correct!

We lived in limbo for 18 months. It's not always easy to diagnose and unlike Cancer, there was no support to be had when we left the consultants office, no nurse support, no support like MacMillan. Weeks passed of the whole family being in a daze. We sourced our own support with Princess Royal Trust for Carers and Mind.

[Hidden]

It's so hard isn't it. I think, if it is a partner with the sickness it is worse in a way because you lose the person who could have been your support through the problems. Especially with dementia, you have to think for the two of you, do everything with his/her welfare in mind but without a partner to talk things through with. I never thought our retirement would be like this. I have just had to take a plastic tray out of my oven. I came home and switched the oven on, went off to feed the dog and came in to an awful smell. The tray, needless to say, had begun to melt. So many instances like this, how can I go out for any length of time without worrying. I went to the cinema the other night, first time out for ages and worried all the way through the film. Oh for a simple life.