wife not carer

It seems that given my husbands fairly recent diagnosis for Alzheimers that I am now assumed to be his ‘carer’ and this feels like the thin edge of the wedge. I am his wife not his carer.

Obviously I will support and help him but if and when he gets to need more nursing care that is not a role I wish to take on. My fear is that by accepting this ‘carer’ tag that it will be assumed I am his nurse and nursing care support won’t be available. We are not claiming any allowances and so far I have only been sent a load of information for ‘carers’ and a card.

How do I square this circle and not inadvertently get myself in to a nursing role that I am not equipped to do?

Rest assured Janet, no-one can be forced to Care for someone else no matter what their relationship.

I’m not saying it will be easy to convince those that want you to do it, but just keep telling them that you won’t do it. Social workers will try every trick in the book to get you to do it, they will lie, they will cheat and they will cajole you: stand firm and just keep saying no.

If you’re husband has over £23,250 in savings he will be expected to pay for his care himself. Your own savings are not taken into account.

It is the thin end of the wedge and full credit to you for recognizing it! Now is the time to stand firm for both your husband and yourself.

Social workers, hospital staff, district nurses and paid CARERS - they are all expert in assuming you will be there, do what you’re told and accept the role THEY want you to have! Even down to opening the front door on demand rather than them having to get the key from the keysafe! (Been there and done that!)

You need to be polite but very firm, ask all the questions you have keep good records, attend planning meetings and assessments, be involved managing your husband’s care. But don’t fall into the trap of helping a single carer transfer your husband because the second carer hasn’t shown up!

Welcome to the forum.
When we get married, none of us know what our future will hold.
We know that in time, one or other of us will get ill, or die, but it seems so far in the distance.
My parents and my in laws, all living nearby, all survived into their eighties, all had an extended period of ill health before death.
Heart disease, dementia, knee replacements, chronic osteo arthritis, you name it, they had it. Mum alone had a massive 28 different ailments.
On the other hand, my husband died in his sleep from a massive heart attack at the age of 58. I’ve been a widow for 15 years.

We have to do our best with whatever hand life deals us.
Finding out what “our best” actually is takes a while, and an element of grieving for plans that will never happen is part of the process.
Start by claiming either Attendance Allowance, if over 65, or PIP, if under 65.
Your husband is exempt from Council Tax due to “severe mental impairment”, a horrible term. It’s easy to claim.
Don’t fall into the trap of trying to do the work of two people, or even three (i.e. caring) on your own.
Something has to give.
Do you have power of attorney?
How much help does he need at the moment?

Thank you for your support and responses. It is always good to know I can come on here and others will have had similar experiences.

Currently he isn’t so bad - early days. I have had to take on all the driving (no problem as I like driving) and doing all the admin stuff (again no great shakes). I do have to watch he takes the right meds at the right times. I went out for a day and he got them all wrong and as a result felt ill. But on the plus side I can still leave him on his own for a day or hours. A part from the Alzheimers he has heart problems, eye issues and skin cancers. So hospital trips seem now to be a very regular part of our life. I have to attend with him as otherwise he gives out inaccurate info or fails to remember what they tell him, often muddling one specialist with another.

The biggest readjustment so far is we have always led fairly independent lives doing our own thing, but now he has no outside interests and so the relationship has become a 24/7 and I find that really hard. His permanent need for me to be ‘on tap’ is in itself exhausting. Reminds me currently of having a 5 year old around, but where they become increasingly more independent, this time it is in reverse.

At this level I don’t mind ‘caring’ but if I we get to the nursing area and level that is when I will have to say NO. I am just not a nurse or personal carer. That is the bit that worries me as there seems to be such an expectation that a wife (or even husband) will do these things. Whilst some may be happy with this what happens to people like me who aren’t and don’t wish to be?

You cannot be forced to care.
This would be a good time to try and find a male carer to take your husband out, so that he gradually gets used to someone other than you being involved in his life, so you have some of your own.
Have you asked Social Services for a Carers Assessment? Your husband doesn’t have to know, but it would give you an opportunity of talking about your feelings and making plans for the future.