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I'm New to CarersUk - Carers UK Forum

I'm New to CarersUk

Tell us a bit about yourself here.
I fostered a baby with cerebral palsy - James lived for 13 years, and died of a condition completely unrelated to his disability - my family loved him totally, and as his carer, and, to him and me, his Mum, I was devastated.
In my second marriage ( a really bad marriage and I am now a widow) I brought up my husband's children from his first marriage. My step son has Aspergers syndrome and step daughter has ADHD. They are both now adult, and I still support my stepson emotionally on many levels, although he has a successful career, and a good relationship with his girl friend.

Over 6 years ago I met the love of my life. A wonderful man. He moved 200 miles to live with me, and we have been happy until this year. He was hosptialised in January, and diagnosed with Crohns Disease, but more worryingly is showing rapidly advancing symptoms of an as yet un diagnosed dementia. His behaviours are very peculiar and each day brings something new. it makes me very sad. He is 70.

I am 68 years old, and work full time in my own little business which I love. But I am terrified of the future. He is far away from his own family - we are not married, we do not have much money, and rent our home.

How am I going me meet the challenge of becoming a carer yet again? I do not think I have the strength.
Mary, this is a very sad situation. I'm sure a million thoughts and worries are going round in your head right now. For different reasons, but caring related, I had some counselling arranged for me. I think this would be a good idea for you. There are all sorts of questions, but they all need you to decide whether or not this relationship continues. A counsellor would not tell you what to do, but talk things through with you, so that you came to the final realisation about the course you should take, moving forward.
Hello Mary and welcome
I'm a practical person and am worried about the financial and legal side of things.
Your partner should have a will and power of attorneys in place for both financial and health. If he hasn't they need be done asap and before he loses mental capacity.
As you aren't married you gave no rights, and heaven forbid, he should pass away you wouldn't even be able to arrange his funeral.
You also need to look at tenancy agreement to see what the situation is there.
If you don't already you need a joint bank account.
There's lots of checklists on line such as this one for cancer sufferers but much of it is relevent to you https://www.mariecurie.org.uk/help/term ... ning-ahead

I'm sure others will be along regarding the caring aspects and emitional side. Ive got to pop out now
You have been given good practical advice.
You have dealt with a lot in your life.
As for Strength?????? Maybe you still have it, maybe you haven't. You don't know. I don't know. Only time will tell.

Dementia? I wonder if he/you have started the road to diagnosis or not. I only know that my marriage still had value right to the very very last stage of his dementia.
Maybe just maybe there are causes for the changes you are witnessing, causes which may be treatable. In either case, I wish you both well and also hope we can support you somehow.

Of course you can run from this.and there is no shame in that .....but dont make hasty decisions right now. Give yourself time.

You sound like a pretty amazing person to me. Trust yourself is my best advice.

DR (age 70)
What a lot can change in a couple of months, and how easy my last post made things seem....

What has happened?

Well, just before Christmas my other half was admitted to hospital in Exeter and they discharged him after a couple of days - I now realise they should not have.

By 29th Dec I realised he was very sick indeed, and took him to the local surgery in the car. We ended up with blue lights and sirens into hospital in Somerset. And he remained there until last Sunday - 39 days in all.

During that time he almost died, and after 3 weeks trying medically to stabilise him, they did an emergency colonoscopy. So he now has a stoma and a bag and we have entered a surreal world....

The hospital did not tell me that they did a CT scan and came back with a diagnosis of 'small vessel disease' which, it seems could be vascular dementia. I was told, in passing, that they had found 'some brain abnormalities' but as that was not what he was being treated for , they would do nothing, especially as we have an appt on 2nd March at a Memory Clinic.

What they did not tell me was that as he was so very ill, and also had had an anesthetic, his memory would become worse, and may or may not recover.

He was discharged last Sunday with the assumption that I was his carer. I had told them I wasn't, his children had told them I wasn't - we had said this to everyone from the Surgeons to the Stoma Nurse, to the Consultants to the OT's to the Discharge Team. It seems there is a default situation that if you live with someone, remember we are neither married nor engaged, that you WILL care for them.

He was not ready to be discharged but there were no beds on the rehabilitation ward. So - home he came.

On the first night, one week ago today, he spent nearly 3 hours sat in the bathroom because his stoma bag had come off and he did not know what to do - and I had not been shown what to do - let me tell you there was a mess everywhere including the lounge. I eventually through 111 got the attentions of the nicest District Nurses to come and help us.

Oh, did I say that during all this I had to close my lovely little business and that was really upsetting, not least because I loved getting out and meeting people.

The last week has been one of the most miserable I can remember. He is frustrated and upset because he cannot recall what he should be doing to look after himself - there is a laminated sheet on the bathroom window but he does not look at it. The washing machine has been going full pelt. A care lady comes in for half an hour in the mornings to encourage him to get out of bed, wash, and change his bag - Oh washing, he will not use the shower in our rented bungalow - he is 6'2" and it doesn't suit him, so he is down to strip washing as he can no longer go to the leisure centre for a swim sauna and shower.

He thinks he has to strip naked to empty the bag - this is all the dementia I am sure. The other night he suddenly stripped in the lounge - good job the neighbours weren't watching!!!!! He used to be a delight to be with, now he is someone else that I do not know, bless him........
Are you getting just one visit a day?! Did the hospital do an NHS Continuing Healthcare Checklist Assessment involving you? Did they draw up a care plan with you, and discuss what was needed? Do a psychiatric assessment? It seems that you have fallen right through the net, and need to stop trying to deal with this on your own and start jumping up and down. Firstly, at the hospital, as they have a duty to ensure that patients have a "Safe Discharge" and his simply doesn't meet this criteria. Then contact Social SErvices and tell them to do an URGENT reassessment.
What do you want from here onwards? Residential Care, carers at home, or ....? I suggested a while ago in response to an earlier message that you had counselling. Has this been arranged now?