Major adjustment

Hi all. This is my first post and looking for other people in similar situation. Sorry if my story is a bit long but is a bit different.

A bit of background about myself. i am 33 and originally from the north east. I left the UK over 10 years ago after landing the job of a lifetime with no intention of ever living in the UK again. My parents separated 10 years ago after living in the bahamas for several years. A couple of years later my mother moved back to the UK to help care for my grandfather, living with him and my aunt who split care with him.
Since then I have married an amazing woman in the same career as me. We both work at sea and have a very transient lifestyle with no fixed abode due to the nature of the job. We were saving for our first house in the USA.
A year ago we got married and were just coming to the end of our honeymoon when my Mother had a severe haemoragic stroke. Obviously my wife and I jumped on the first plane and made it back to the UK in less than 36 hours.

As we were between jobs I was able to stay with family and visit my mother and take decent food in for her every day. In the meantime my wife found some temp work abroad to keep a little money coming in so we were separated a lot.
My mother finally made it out of hospital after 4 1/2 months. We found a nice bungalow for my mother, aunt and myself as my mother would need constant care if she was to recover.

I was lucky enough to find a new job that was rotational (10 weeks on/10 weeks off) and a pretty high stress position I might add. This ment that my aunt (who has her own health problems) could care for my mother when I was away then be able to stay with her partner when I am back.
It must be pointed out that due to my wife being American she cannot work in the UK and the industry we work in is almost non exsistant in the UK.

I am now coming to the last couple of weeks before I go back to work an I am dreading coming back after 10 weeks.

My mother has been making amazing progress but still needs someone pretty much live in and may always need it, we just don’t know yet.
I have to stress that compared to most of the stories I have read my mother is a saint of a caree. However she still needs all of her meals made and has to be reminded about her pills at night. Thankfully she can take care of all of her personal hygiene without aid now, although she still wants someone to be around.

One of the hardest things to deal with is her depression. She never sees the positive in anything now. Non of the progress she has made counts to her, because she still needs to be cared for.
She is seeing a psychologist but does not like it as it is forcing her to deal with unresolved issues.
Every 3 to 4 days I can expect to have to help her through a weepy day which in turn has me down low for a day or 2.

I can’t say strongly enough how much I hate being a carer. Every commode I have to empty, every cup of tea I have to make, every outing with my mother that revolves around proximity to a disabled bathroom, everything.

I can’t even find respite by seeing old friends as they all, and I mean every one, have childeren and the thought of being around another dependant person depresses me.

On top of this out of our first year of marriage my wife and I have spent less than half of it together. Of that time we have had less than 2 weeks proper alone time.

The only thing that has kept me semi sane is the jewellery that I make in the garage. But this is mainly an excuse so I don’t have to send time in the house and is detrimental to my mother. I know that she would do better with more company but I just can’t face it.

Basically I am filled with anger, guilt, remorse longing and despair any time that I am in this country that I have spent 10 years staying away from. It is not home any more and I feel trapped!

Hi Jamie,

You and your wife deserve to be together and work normally, otherwise there are huge financial and personal implications later in life for you both.
Unfortunately, when there is a crisis it’s easy to do all the wrong things for all the right reasons!

The care and benefit system is a bit like Snakes and Ladders.
The answers to the following questions are really important, they are not as random as they appear!!
In your post you say that “we found mum a nice bungalow”. Where was mum living before? Did she own where she used to live, or where she is living now?
Does she have over £23,000 in savings? Yes/No
How old is mum? this will affect which benefits she can claim.
How old is your aunt?

Bowling bun
My mother does not own any property and only has a little in savings.
My aunt is very familiar with the benefits system as she has had severe health problems for years and does not work. We have got everything that we are entitled to in that respect.
What the system would provide if neither my aunt or I were carers is a joke. They are short staffed and could only offer 15 mins assistance 3 times a day. That is not even enough to make a meal for her.

Basically we have 2 options. Me and my aunt take care of her or put her in a home. There is no doubt in my mind that a home would be highly detrimental to her recovery as she is only 65. Plus the fact that my aunt would never speak to me again.

Jamie, they aren’t telling the truth!!

Mum should have a Social Services Needs Assessment, and then they must need mum’s needs. If she doesn’t have savings over £23,000 they will pay for some or all of that care.
Your aunt should have a Carers Assessment.

It’s really important to separate what mum NEEDS with what mum WANTS. Of course she didn’t want to be ill at such a relatively young age (I’m 67) but it sounds as if she NEEDS 24/7 care.
If your aunt is not in the best of health either, then she cannot be expected to care for mum at all.

i would also suggest that you looked at whether or not mum is entitled to NHS Continuing Healthcare, free care at home for those with very serious needs. This is something of a postcode lottery.

Finally, don’t dismiss residentlal care. Some homes are very good indeed - your mum would need a “Nursing Home” as she is incontinent and has other needs.

You need to write to Social Services and say "I will not be available to care for mum after June 1st, or whatever date you like. Only this will concentrate their minds. Whilst you are there to care, they won’t give mum all she is entitled to.

Hi Jamie.

Some links to go with BB’s posting.

Needs Assessment :

The Care Needs Assessment Explained | Age UK

Carers Assessment :
Carer's Assessment - Advice and help for Carers | Age UK

CHC / NHS Continuing Healthcare … main thread :

Hello Jamie,
I’m sticking my nose in here, am not in your situation, and probably won’t be much help. That’s a good start eh?
The message I want to give you is that it seems to me that you are looking at this from the wrong angle. You are thinking how to juggle your new marriage, your job (which isn’t the one you want), your preferred lifestyle and caring for Mum. Impossible of course.
Stop it. Start thinking of how you can make sure Mum’s care is provided for while you and your lovely wife enjoy your time together. Mum has had her chances, made her choices, lived the life she made for herself. It’s awful that she is now in a sorry state at such a young age. (Yes, young considering today’s life expectancy) BUT that’s not your fault and most certainly does not oblige you to give up your own chances, choices, and the life you want with your lovely wife to be Mum’s nurse and skivvy. Absolutely not.
You mentioned your aunt’s partner. Someone you can talk to? What do they think of the situation? Sounds like Mum needs someone around most of the time. Possible choice. Aunt is cross with you or new wife is unhappy and neglected? No brainer?
Please plan to get back to YOUR life. Your ‘normal’. If Mum cared for her Dad that was HER CHOICE. Maybe it was convenient at the time? Doesn’t mean you have to make the same choice.
What if you had a life, family and job in Australia? Would you abandon all to empty commodes here? Same difference.
I’m really sorry for your Mum. I’m older but I’m lucky. Reasonable good health and husband still with me. However I realise all that could change tomorrow and one thing I’m not going to do in the future is blight my children’s lives by taking them over. I hope my children will do their best to see that I have a comfortable life with help. I do not want them to be that help. Been through that, don’t recommend it.
Hope you find a clear path which leads towards your and your wife’s happiness without you feeling that you have let Mum down. (Thinking that?). Mum and aunty need care. Organise it, don’t be it.
You have choices.

“My aunt would never speak to me again”.
Would that really matter???

That’s just subtle blackmail. If aunt is already poorly, she really shouldn’t be caring for your mum at all. Is she just worried what will happen to HER should mum go into a home. I’ve had a total of 10 carees over the last 40 years. (I lived in Australia 73-76, had a wonderful mad crazy life, 9,000 miles in 5 weeks to go to a steam rally, even shipped 2 steam engines to the UK). It all came to a juddering halt when my second child was brain damaged at birth.
I have learned the hard way that what people say to you if often motivated by self interest, the more you do the less they have to.
One of my biggest concerns about mum’s current situation, is that if anything goes pear shaped in future, especially concerning your aunt, you will be expected to drop everything again.
Maybe it’s better to focus on mum’s long term needs, when a mixture of age and disability will inevitably increase?

One of the advantages of the forum is that you can ask one question and get a wide variety of views, sometimes acting as “Devil’s Advocate”. It’s OK to disagree, OK to say “what if”…

One final thought, has mum sorted out a Power of Attorney. If not, that needs to be dealt with asap.