I need ongoing wellbeing support but getting nowhere

[Alisongs]

I have a diary thread Alisongs Diary. My OH is 67, with diabetes type 1, Parkinsons and dementia. Dementia diagnosis only 10 months ago. Fading fast. Currently in hospital with diabetic issues that community nurses have not managed.
My huge issue is burnout as we got no help for many years (husband too complex, and multidisciplinary approach does not exist in NHS) First hospital stay in Spring. Limited help since now forthcoming, but not as promised or expected by discharge team. I still have to pick up whatever social services and medical workers don't do, drop, or won't do......Severely burnt out. All support, promises and callbacks stalled while OH in hospital. I've been promised, for me, GP and mental health callbacks and visits that haven't happened. Chased on surgery website. Nothing. Is there anywhere I can get at least a weekly callback to see how I'm! doing?
Sole carer, no children, my siblings family 100 miles away or abroad. OH only has one sibling who has recently become imvolved.

 

[My Mum's Daughter]

Well done for reaching out and admitting that you are struggling, something that I think, some of us had already guessed.

As you're getting no local support, please call the Alzheimer's Society and have a chat with them.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

 

[sapphire turner]

Hi Alisongs it sounds like an awful situation for you. I wonder if you could refuse to have him home from hospital? Others might have more advice on how that might play out.
It sounds like you have reached carer burnout, that makes it very hard to advocate for yourself. Do try to get an emergency appointment with your GP, be truthful about how bad you are feeling. There is no point you ruining your health any further, you will be no help to your husband if you can’t get some help. Sending love ❤️

 

[SAP]

Have you looked to see if there is a Carers’ Centre near you? Some do offer counselling, others can give you a bit of 1:1 support or peer group support.

Support where you live | Carers UK

www.carersuk.org

 

[My Mum's Daughter]

@Alice_M are you able to help please?

 

[Alisongs]

Thank you all. Will follow these up.
Best Interests Meeting tomorrow. Not in my husband's best intellectual interests to be permanently in a nursing home. Yet. Few nursing homes locally can deal with his complex needs, so, temporarily or permanently I could be looking at six hours a day or more, just to visit him. Not exactly a best interest for either of us! Two nursing homes on local bus route do take hospital cases so have to hope he comes home with proper support this time, or is local. Not holding my breath!

 

[Alice_M]

@Alice_M are you able to help please?

Hi @My Mum's Daughter

Thanks for your message, and for your concern for @Alisongs. I'd like to reassure you all that we are aware of the situation and we are looking into support options.

As a reminder for all of our members, if you’re concerned about a post or a member you can use the “report” function which notifies the staff and volunteering team for review.

If you require support yourself you can email us at dementiasupportforum@alzheimers.org.uk. Thank you to all our members, staff and volunteers who help to keep Dementia Support Forum safe and supportive.

Best wishes,

Alice
Dementia Support Forum Team

 

[jennifer1967]

im just wondering about local voluntary organisations. i have a befriender that ive had for 2 years now. she phones once a week for an hour. its more like 1 1/2 to 2 hours these days as the relationship has developed. mind is another that might be a good link. mind matters as well. has your doctors got services on website like steps to well being.

 

[JaxG]

Hi Alisongs it sounds like an awful situation for you. I wonder if you could refuse to have him home from hospital? Others might have more advice on how that might play out.
It sounds like you have reached carer burnout, that makes it very hard to advocate for yourself. Do try to get an emergency appointment with your GP, be truthful about how bad you are feeling. There is no point you ruining your health any further, you will be no help to your husband if you can’t get some help. Sending love ❤️

My husband went into respite two weeks ago. He has deteriorated so much in the last 6 months that I can no longer give him the care he needs. I have said that I cannot cope any more and SS have found him a room in care home. @Allisongs It sounds like you and your OH might be at that stage? Do contact your doctor, say that you have carer burnout and they should get the Older Adult Mental health team involved. I hope you get the help you so desperately need, I do know how tough this is.

 

[Alisongs]

My husband went into respite two weeks ago. He has deteriorated so much in the last 6 months that I can no longer give him the care he needs. I have said that I cannot cope any more and SS have found him a room in care home. @Allisongs It sounds like you and your OH might be at that stage? Do contact your doctor, say that you have carer burnout and they should get the Older Adult Mental health team involved. I hope you get the help you so desperately need, I do know how tough this is.

My OH is not intellectually ready for a nursing home yet. His decline is fast, but not that far

 

[JaxG]

My OH is not intellectually ready for a nursing home yet. His decline is fast, but not that far

Can you get any respite care?

 

[Alisongs]

Can you get any respite care?

Hospital is looking to Discharge to Assess and stablise, would take some time to find a suitable nursing home, and moving him may undo all the stabilising of his blood sugars and make him more confused and unsettled. Then do it all again to come home as he's still mobile, engaged, has legal and financial capacity......difficult no win Situation!

 

[Alisongs]

OH Best Interests Meeting took place today. Attendees took copies of my statement with curriculum vitae and photos of my husband. Apparently noone ever turned up before, prepared like that. He is going into a nursing home for assessment and stabilisation, but I have helped the Discharge Team focus on his overall personality and wellbeing, not just diabetes control. And OH's wellbeing, and mine, will be affected if the nursing home is not an easy commute for me. And beware Chinese whispers. At least one of the community nurses raised concerns about me administering odd doses of insulin..... They don't read the notes! Docs in meeting knew I had been doing OH's entire insulin regime annd keeping him alive, prior to his first hospital admission in April! Not involved ever since then

 

[Kevinl]

Alisongs it's wine o'clock (soon) and you deserve it, well done you. K

 

[Alisongs]

Alisongs it's wine o'clock (soon) and you deserve it, well done you. K

Currently making do with posh fishcake!

 

[Kevinl]

Pollock's? Or some posher fish. K

 

[Alisongs]

Pollock's? Or some posher fis

Pollock's? Or some posher fish. K

M&S Best Ever Salmon. Other fishcakes are available!

 

[jennifer1967]

M&S Best Ever Salmon. Other fishcakes are available!

M&S will have to start paying you and giving you shares in the shop. Enjoy!!!!

 

[Knitandpurl]

I am very attached to their Almond biscuits (I hide them from OH). They taste very like the ones my Mum used to make.

 

[Alisongs]

I am very attached to their Almond biscuits (I hide them from OH). They taste very like the ones my Mum used to make.

I agree. Yummy. So are the shortbread fingers