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Care & carers

THE DEFAULT CARER - when no one listens

(44 Posts)
HeyHo Thu 11-May-17 07:33:38

My partner and I have been together 6 years. We live together, but are not married.
He was taken very seriously ill between Christmas and New Year and almost died. His life was saved ( thank you wonderful NHS) with a major operation lasting 6 hours which ended up with an ileostomy.
We had worries about his memory before hand.
But now it was obvious it was rapidly going downhill and he was diagnosed with 2 different types of dementia.
When plans were being made to release him from hospital it was very obvious he could not care for himself
I have already been a carer for 24 years of my life, and at 68, felt I did not have the strength to do it again. His children agreed.

THE POINT BEING.... no matter how much we spoke to the hospital, social services etc etc, the default situation is that if you live with someone YOU ARE THEIR CARER at least where I live, it is.

5 months down the line, he has recovered from the surgery, and we have built a new life for him where he enjoys swimming, sauna, bowls, and snooker. Excellent. His driving license has been revoked, and the car sold, so he is a little better off financially as he also gets Attendance Allowance. He is happy in his own way, and content watching war time DVD's on his laptop.


Well, my life is in shreds. I had to close my business ( I am a genealogist and had an office in town) as there was not time to sell it. My income plummeted to the extend I am not really keeping my head above water. I try to work from home, but there are constant interuptions from you know who and I am completely stressed as I have many unfinished projects and my clients are badgering me.

The biggest insult is that he gets a pension but is still eligible for Attendance Allowance

I get a pension but cannot get Carers Allowance because of that - this anomaly saves the Government £360 BILLION a year countrywise.

Mad? YOu bet I am, Furious? Yes! Sad and mourning for the man I have lost who is no longer here - he looks the same, but isn't and upset over my ruined business.

The default carer - thanks for listening.........

cornergran Thu 11-May-17 07:55:01

I'm so sorry for this situation heyho. I can't offer advice or practical ideas, others will be along who can because they share or have shared this experience. For what it's worth I agree with you that many care assumptions are made that are both unreasonable and unfair. Just wanted to send hugs, flowers, brew and also wine for later and to say there will always be someone here to listen when you need it.

Christinefrance Thu 11-May-17 07:59:31

I'm sorry to hear of your problems HeyHo and your partner's illness, life must be difficult for you both.
You are clearly caring well for him and his life seems as good as it can be. Time to think of yourself now, is there a support group locally to help ? Are there Admiral Nurses in your area who who support carers of people with dementia.? Dementia UK may be able to help. CAB for financial issues. Take one step at a time to see what help is out there. Good luck,

kittylester Thu 11-May-17 07:59:58

I feel so sad for you! flowers

Have you contacted the Alzheimer's Society? They have lots of helpful advice for carers.

Has your partner had any social services assessments?

Have you had a Carer's assessment? As a carer you can demand one - regardless of what ss tell you. You cannot be forced to look after someone if you don't want to or can't.

Have you investigated day centres that your partner can go to to give you time to yourself?

Please come on gn and moan all you like!

HeyHo Thu 11-May-17 08:13:13

thank you all. It's great that in just a few minutes, I get some responses.
The biggest problem is that his brain is damaged in such a way, that part of his brain is telling him everything is OK. He cannot understand that he is not the person he was - he will not go to a day centre - we have tried that - as he does not think that he is like the people there.
I have had a Carers Assessment, and we now get Direct Payments - I use some of the money to pay for his twice weekly swimming and sauna - he has an agency carer goes with him and the cost is £150 a week, which does give me about 7 hours 'me' time a week.
His children live up country, and they have suggested that when the time comes for him to have to go into residential care, he should return to their area, so that members of the family will be able to visit him rather than it all falling on me.
He has no family down here in the westcountry.
christinefrance - I will look at the Admiral Nurses - I have not heard of them before..... thanks

Thanks again everyone - time to get another day underway smile

Jane10 Thu 11-May-17 09:03:22

I know that the OP is a rant about the unfairness of life. Sometimes it just sucks. However, it got me thinking. Who should the carer be? Who is actually responsible for us if/when we can no longer look after ourselves? Hospitals have to know this so its not unreasonable to expect the person they live with to do it.
In the cases of my M and MiL we automatically took this on. Its a family responsibility. I was taken aback in Bangladesh when asked about my son's marital state. There was shock expressed when I said that he wasn't married. 'But who will look after you when you are old?' was the question. No DiL= no care!!
Seriously though -who should do the caring?

kittylester Thu 11-May-17 09:14:02

In some areas the Alzheimer's Society run 4 week courses for people caring for someone with a diagnosis of dementia. And, they also have one to one support, befrienders and memory cafes etc. Please give them a ring.

You do seem very organised and well informed though.

aggie Thu 11-May-17 09:22:36

My DD signed me up to a carers group who continue to email me with activities , courses and news , but I don't drive , need a new hip and am too old to trail onto public transport to get to these wonderful events , and who will mind OH when I swan off to them ?

Izzywizzy Thu 11-May-17 09:36:54

You're right to feel furious. As you say you've lost your business and you had no time to think what to do so just closing must have been so difficult and upsetting.

I wonder have you applied for pension credit ? My parents have early dementia and they get Attendance Allowance and pension credit and this helps enormously. Then they get another payment that confuses me is called something like Carers Guarantee ? They get more money this way than if I had claimed carers allowance. Age UK were amazing so I suggest you contact them and they will help you claim anything that's due to you. They also put you in touch with other agencies.
It just fell to me to care for my parents because I don't work but the reason I don't work is because I have health problems. The irony is that I could do with a carer but I have an invisible illness so no one knows what I go through.

I really feel for you so please get help today and also get a carers assessment.
Good luck x

Izzywizzy Thu 11-May-17 09:41:41

Aggie you too need a Carers Assessment. They will help you to have some time for your hobbies etc. Again I suggest Age UK, one call changed all our lives.

Luckygirl Thu 11-May-17 10:20:41

You have had all the right assessments and offered all the right things - but this does not alter the fact that you are not the carer and should not be regarded as such just because you share a house. Who said that this was the case? - and insisted that you take on this role?

What would be your desired outcome? - given that there is nothing at all about this situation that is to be` desired. Would you feel that it would be best if he went into residential care? Or that he had full time carer who wasn't you?

SSD cannot ignore the fact that neither you nor his family regard you as automatically being the "default carer." Did you make that point clearly in your Carer's Assessment? I think you need to go back to SSD and tell them louder and clearer that you do not regard this as your role. That your financial circumstances have been wrecked by this.

I used to be a SW with people with dementia and I have to say that I would not have ignored your position. I would have assumed that you would continue your job and have organised the care accordingly. This situation is worng in principle.

HeyHo Thu 11-May-17 11:17:31

Gosh! Lucky Girl - you are so right!!

It was quite surreal at the time and I know neither his children nor I were thinking straight.

He had gone to the doctors, thinking he was coming home for his supper ( I was with him) and he ended up in an ambulance lights and sirens and did not come home for 6 weeks. I put the Christmas turkey in the freezer where it languished till Easter!

He got worse and worse in hospital til we were told he was dying and they were doing emergency surgery to remove his colon.

In the recovery time, his children and I realised his mind was completely somewhere else, but we kept being told it was the effects of the anesthetic and it would wear off - IT DID NOT!

We all expected and were told there would be a period of rehab in a ward at the hospital designed for that. This seemed to be a good plan. The hospital needed his bed on surgical and we understood that.

I was visiting one day when a nurse casually commented that he would be coming home 'tomorrow' - WHAT? He had a stoma and bag he could not manage, his mind was shot, he was traumatised and so was I.

There was now no room on the rehab ward.

I managed to get them to keep him for another 3 days whilst we made plans at home.

By this time his children had gone back to the Midlands.

On the first night home he spent almost 3 hours in the bathroom, with faeces all over him from a dripping stoma ( sorry about the detail) and his bag having come off because he could not manage it ( hospital said he could) and I had not been shown what to do. We ended up with a district nurse here late at night and she was wonderful.

I still have a man who can empty the bag - is obsessed with it bless him - but cannot change it and cannot understand what has happened to him

The social worker told me she thought I was suffering from Post Traumatic Stress - ha ha ha - yes of course I am!

We are 3 months now after him coming home, my head is slowly getting round things, and I am in my mind feeling like doing battle with someone - not sure who just yet.

The hospital were wonderful when he needed his life saving, but after that they were rubbish, the follow up was rubbish and I certainly feel for people who are less able than I and the struggles they must go through.

Charles Dickens highlighted a lot of Victorian problems in his writings - but, you know, there is one heck of a lot wrong in this country in our time............ rant over.. for now and bless you all xxx

Luckygirl Thu 11-May-17 11:40:19

Rant away - this is all unacceptable and sadly not unusual. I had similar problems with both my parents when the hospitals they were in sprung unplanned discharges on us. Luckily, being "in the know" I was able to say that they are obliged to do a planned discharge and told then what assessments they should do and how things should go. The problem of bed blocking that results from proper planned discharge (which take time) is not the patient's or their family's responsibility. I am very sorry indeed that you have finished up in a situation where you had to abandon your business - that is wholly unacceptable.

I am shocked that he was sent home without proper attention to his stoma care - that is beyond bad.

GracesGranMK2 Thu 11-May-17 12:20:30

So sorry and shocked to hear what has been done to you Hey Ho. I shouldn't be as, being the main support (I am not a 'carer' they should be professionally trained and professionally paid angry) for my mother I can see there is no proper care in place but, living in hope, I am still shocked.

There is nothing I can offer to help but, like everyone else, I wish there was.

Jane10 Thu 11-May-17 12:43:03

Sorry I can't agree Ggm2. We can't just expect there to be some sort of state supplied official 'care' for everyone. Families can be supported in a variety of ways (if they want this). I was offered a befriender of all things! No thanks. I was busy enough with everything else to do. However, it always felt like it was our responsibility to look after our Mums as they became older and infirm. I'm glad we did. No one would 'care' about them or for them like we did.

HeyHo Thu 11-May-17 13:02:09

Lucky Girl

I was shocked beyond belief - the stoma nurse kept telling me he could manage it all, but I knew he couldn't from what I was seeing in hospital when visiting.

When I say surreal, it really is. It's as though you are opening your mouth and talking, and they are not hearing you, as they ignore what you are saying.

What I also found weird was that when the point came that he was not able to sign consent for the operation, a doctor came to explain the whys and wherefores to me and his son. This is a big event in our lives and stressful, my partner was dying, yet they talked to us in public with other patients very nearby and people bustling about - couldn't a small room even a cupboard have been set aside.

We live in a strange world

GracesGranMK2 Thu 11-May-17 19:03:00

That wasn't exactly what I meant Jane10. I do care for my mother, but never mind.

HeyHo Thu 11-May-17 19:12:14

Just a little mis understanding but all well now, I hope.

I have already been a carer to 4 other people, none related by blood ( foster children, step children - all disabled) and now the love of my life, we found each other in our early 60's and were going to have fun and grow old together.... but it's all been grabbed away, and I have turned into his nanny/housekeeper/ nurse/ carer but no longer his lover - life can be very sad sometimes - thank goodness for Gransnet, thank goodness for the internet.......

Jalima1108 Thu 11-May-17 19:48:58

I'm not sure if anyone has put this link on already; it could be helpful

This brings us to the question that was discussed the other day on another thread: the pension should not be classed as a benefit!!

If you can get help for just a couple of sessions a week to get out and do something for yourself, Admiral nurses or there may be other organisations in your area, you will find that beneficial.

One of DH's friends has had a stroke and was resistant at first to going to a day centre but he does enjoy it now.
Could his children have him to stay for a week now and then to give you a break? Perhaps you could take him there and then go off for a little holiday on your own somewhere.

Jalima1108 Thu 11-May-17 19:58:57

Luckygirl's psots are very sensible and informative.
Of course, hospitals will try to push people out as quickly as they can but this should not be the case until a proper care plan has been established, someone has visited your home to make sure everything is suitable and you have agreed to all this.

It sounds as if the hospital staff have railroaded you both and discharged your DH way before he was ready.

I would be interested to know which hospital it was but don't say if you would rather not on an open forum.

I know of one West Country hospital which was supposed to have protocols in place for dealing with patients at end-of-life but these were completely ignored.

vampirequeen Thu 11-May-17 21:26:30

What does your GP say? Have you told him how caring for your partner is slowly killing you too? My aunt cared for my uncle who had dementia for far too long before the powers that be finally decided that he needed professional care not just loving care. Although he passed away several years ago she has never really recovered from the physical and mental strain.

Caring for someone with dementia is not the same as caring for someone who is simply aged. Your partner also has extra needs that you're not trained to deal with. And you are grieving for the life that might the life that should have been.

Has your home been assessed? Does it meet his physical and safety needs?

You need to contact all the agencies and charities that have been mentioned by other posters. Does your partner have a social worker? He/she needs to get involved.

Please post and rant and rave on here as often as you need to. Simply talking about things can sometimes help to relieve the pressure for a while.

HeyHo Thu 11-May-17 21:49:45

I have just spent half an hour trying to sort out a leaking stoma bag ( I know far too much information) and working out how to deal with it without making more mess than there already was! He is 6 foot 2 and I am 5 foot - taking his messy cords off was like changing a baby smile

I am going to see the doctor next week, as I need some guidance and advice - I have tried for over 3 months on my own, and I need some shape to my life as well as his.

thank you, all of you, it's wonderful to know that you are out there reading what I say and showing your concern - thank you again and god bless you

Nana3 Thu 11-May-17 22:57:51

My sincere best wishes to you HeyHo.
You sound as if you are coping really well, this will have been noted by the powers that be. Being a carer for my parents was a task I did willingly but found very difficult so you have my sympathies. I saw a social worker write supportive family on one form, that was just me. Doing it alone is completely different from sharing responsibility with siblings/family.
A good social worker makes all the difference as to how much support you get.
My father died in hospital alone and in horrible circumstances. My mum is in a care home now and as sad as this is it's the best thing for her and me.
I hope things work out soon for you.

GracesGranMK2 Thu 11-May-17 23:43:58

I think that seeing your doctor is a good thing Hey Ho. Sometimes someone just mentions something in passing that can trigger things working a little better.

Generally, I really do believe we need to make our care service work both where it can be the only answer, as it is for some, and where it supports those supporting family members but with the best will in the world it will not happen quickly. I wonder if you have a local Alzheimer's society locally as they may be able to sign post you and support you with getting the help you need.

I agree totally with Nana3 that doing this on your own is very different to having the family involved and the dementia is yet another aspect that I believe is almost impossible to understand unless and until you have coped with a family member and loved one with any mental illness and you are managing both mental and physical and I have to echo Nana3 again and say you are coping amazingly well.

Let us know how you get on - I am sure I am not the only one who will be thinking of you.

Hopehope Fri 12-May-17 00:06:43

I am sorry to hear about what you are going through HeyHo. I am a carer for my Husband. He has Parkinson's Disease, but so far he is ok mentally, alot more anxious than he used to be, but no dementia yet anyway ( I try not to think of the future too much)

We have alot of disturbed nights, and I do get very tired, but reading what you are going through it makes my caring seem like child's play.

I have no more advice to offer, you seem to have already done alot of the things you need to, and there are some very good posts on here already. Come to think of it I have not had a carer's assessment, never thought about it, perhaps I should.

One small thing which irritates me, although I never mention it, but sometimes in the middle of the night I have a little " Feeling sorry for myself episode", the thing is everyone I bump into when shopping, or anyone in the Family who rings me always asks how DH is. NEVER do any of them say, " How are you, are you coping ok, NEVER!!

I hope things ease off for you a bit HeyHo flowers