Struggling at 47

[Sarah_18091234567]

I am writing here as I am struggling to cope and don’t know what to do. I married again for the second time, 4 years ago. This was to the life of my life who I had first met 20 years ago but re connected with. Nothing had changed over those years and our first 2 years were blissfully happy. 2 years in my husband started to behave really strangely, out of character. Now my husband is s shadow of his former self. Cognitive loss, fluctuationing dementia, really odd physical problems. Despite endless tests he still had no clear diagnosis and is seeing range of doctors at national neurological hospital in London. He has not worked for 3 years, can’t drive and cannot be safely be left by himself. I am left to care for him, my 2 children and 3 step Children, work full time. I no longer see friends and we have lost contact with so many people. I feel like my life has stopped. He is emotionally very demanding and rings and messages me endlessly when I am at work. I bounce between guilt and anger. I love him
Still but I feel like I have lost the person I know and love. I am 47 and he is 50. I don’t know what to do any more and often feel life is just not worth the effort

[Henrietta]

Hi Sarah
That sounds very hard to cope with. It sounds as though you need to make progress with the diagnosis so do keep pestering and don't let them forget about you both.
How old are all the children, any of them old enough to take some of the pressure off you? Has your husband had a needs assessment from Social services?
Re phone calls at work- are thye coming through on work phone or can you simply switch off your own phone? How understanding is your employer?

[bowlingbun]

If she is now in hospital, then tell them that you are no longer in a position to care for her. They can arrange for Social Services to do the assessments while she is in hospital. Feel proud for what you have done for such a long time. Gran is now paying the price of very old age, i.e. over 85. Apparently this is a "tipping point" when things increasingly go wrong with the body. It's nothing to do with what you have, or have not done, gran is approaching the end of her life and now needs a team of people available to care for her, 24/. It's not what either of you want, but it's what she needs. My own mum needed a nursing home for her last year too. I know how difficult it is.

[Rosemary_1706]

Hi bb. I think the response you've posted here doesn't belong on this thread! I'm sure you will have useful advice for this lady who is caring for her 50 year-old husband.

Sarah, it seems to me that you are emotionally and physically exhausted or drained and need to seek help from your local authority - some short term respite care and long term care planning for your husband that would allow you to refresh yourself and then to oversee his care rather than doing it all yourself. Please do not feel guilty, it's just too much for one person alone to cope with.

[jenny lucas]

There seem to be two people missing from this situation! The other parent of the five children!

What is your own children's father doing about all this, and what is your step-children's mother doing?

To be brutal, unless they are dead (sorry, I speak as a widow - these nightmares happen, sigh), they should be helping with their children. How come YOU ended up with the steppies??!!!

I agree you have to push and push and push for a diagnosis, or at the least, a 'range' of diagnoses - and then to identify whatever treatments MIGHT be possible.

I would say it's really important to understand from the specialist doctors themselves what it COULD be, and of those possibilities, whether treatment (even cure? eg, maybe brain surgery, for all we know!) is possible, and - this is important too! - how successful such treatment COULD be.

You also have to understand, grimly, whether treatment is NOT possible, and even worse, whether your husband's condition will deterioriate.

Really, there are only three possibilities - he gets better, he stays the same, he gets worse (and just how 'worst' is worst? Just what has tobe prepared for....)

I would say, wouldn't you, that even if the docs can't come up with a definite diagnosis, they MUST start 'treatment' as soon as possible - even if that proves useless. Because you can't just 'go on as is' that is the one thing that is for sure.

In the meantime, little things that can help save your sanity include, for example, simply turning your phone off. Whether he 'offloads' to you or not doesn't really matter, because it isn't going to have any actual effect on him one way or the other.

You say 'he can't safely be left to himself', so what happens when you are at work all day?

PS - you may be tempted to chuck in your job, loads of carers do see this as the 'solution', but there are risks to this to - do not take this decision lightly!