Left alone to cope

[jock01]

My husband was diagnosed two years ago with early onset alzheimer`s disease. We had three visits from a support worker and then nothing at all. No support from any source, no follow up from G.P. nothing. Is this usual ?

John (my husband) has spinal injuries and has also had a triple heart bypass suffers from heart disease has diabetes and also has a slow growing brain tumour. I am finding it increasingly difficult to cope, as you all will be familiar with. And to top it all off we have been told he has to apply for a change to P.I.P.

Where do I go to for help?

 

[Chuggalug]

Sorry to read your message, Jock. I have seen here a few people who don't seem to get anywhere with getting help, but it doesn't seem to be the usual thing. I hope to God it isn't!

I don't know about P.I.P., or what it is, but I do hope someone on here will be able to direct you. There are a lot of knowledgeable folk around here. I know someone will pop in to answer your query.

All the very best. Haven't seen you on before, so a huge welcome to you.

 

[chick1962]

My husband was diagnosed two years ago with early onset alzheimer`s disease. We had three visits from a support worker and then nothing at all. No support from any source, no follow up from G.P. nothing. Is this usual ?

John (my husband) has spinal injuries and has also had a triple heart bypass suffers from heart disease has diabetes and also has a slow growing brain tumour. I am finding it increasingly difficult to cope, as you all will be familiar with. And to top it all off we have been told he has to apply for a change to P.I.P.

Where do I go to for help?

Hello jock01, your first call should be to one of the admiral nurses if they are available in your area. I have been coping on my own for 4 years but decided to get help now. Another great help were carers support! Contact adult social services to get assessment for your husband and yourself as they will see from that what support is required. I, myself did not find SS very helpful but it might be different for you . My husband is also called John he has Alzheimers and Vascular Dementia as well as Copd, epilepsy and spinal stenosis ! I do hope this helps you to make some contact or find some services x


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[jock01]

Hello jock01, your first call should be to one of the admiral nurses if they are available in your area. I have been coping on my own for 4 years but decided to get help now. Another great help were carers support! Contact adult social services to get assessment for your husband and yourself as they will see from that what support is required. I, myself did not find SS very helpful but it might be different for you . My husband is also called John he has Alzheimers and Vascular Dementia as well as Copd, epilepsy and spinal stenosis ! I do hope this helps you to make some contact or find some services x


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Thanks to all for the warm welcome. I have never heard of Admiral Nurses so maybe they do not operate in Scotland. Been waiting since diagnoses for Adult Social Services to do evaluation and despite repeated requests we seem to slip through the net. I have been in touch with local Alzheimers Assoc; and they (thankfully) are on the case.

 

[jock01]

Sorry to read your message, Jock. I have seen here a few people who don't seem to get anywhere with getting help, but it doesn't seem to be the usual thing. I hope to God it isn't!

I don't know about P.I.P., or what it is, but I do hope someone on here will be able to direct you. There are a lot of knowledgeable folk around here. I know someone will pop in to answer your query.

All the very best. Haven't seen you on before, so a huge welcome to you.

Thanks for your warm welcome.
P.I.P. Is a benefit replacing Carers Allowance and Mobility Allowance, it comes with a 42 page form to fill in and a Medical Assessment by A.T.O.S. Please google both for more info. Most people are turned down by these non medically qualified assessors.

Getting John to attend will as you all will know with your own experiences will be a huge stress in its self, he is not good in strange places or with people he sometimes recognises let alone with strangers asking him questions. He will lose the plot, and if we are kept waiting he will just walk away.

 

[Chuggalug]

Thanks for your warm welcome.
P.I.P. Is a benefit replacing Carers Allowance and Mobility Allowance, it comes with a 42 page form to fill in and a Medical Assessment by A.T.O.S. Please google both for more info. Most people are turned down by these non medically qualified assessors.

Getting John to attend will as you all will know with your own experiences will be a huge stress in its self, he is not good in strange places or with people he sometimes recognises let alone with strangers asking him questions. He will lose the plot, and if we are kept waiting he will just walk away.

I know, Jock. That's my husband to a Tee! We once had to wait ages to see a mental health person. After getting hubby into town, (this was a few years ago), we then must have hung around for most of an hour before we got seen. No wonder nobody understands what we're up against. People like us who have always been bottom of the heap are easy to flick away.

No problem. I know Who I'll run to from now on! Six years on and we're both still alive and coping. Not always very well, but hey, we're all right.

 

[chick1962]

I know, Jock. That's my husband to a Tee! We once had to wait ages to see a mental health person. After getting hubby into town, (this was a few years ago), we then must have hung around for most of an hour before we got seen. No wonder nobody understands what we're up against. People like us who have always been bottom of the heap are easy to flick away.

No problem. I know Who I'll run to from now on! Six years on and we're both still alive and coping. Not always very well, but hey, we're all right.

I second what Chuggs said ! Not much available and I too adjust and re adjust . Did try with SS but they are a rule to themselves. I stated in my carer assessment that I would never ask them again! John and I manage too and we still have plenty of good days xxx


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[Grey Lad]

Hi jock01. Glad you have found T P. You will always find someone on here who can help. This site has been fundamental in helping me begin to find a way forward in the dementia maze.

 

[truth24]

Welcome from me too, jock. You will find this forum invaluable for advice, comfort and a place to vent your feelings when it all gets too much. We all understand, being at different stages along the path and, as you will find out, can even manage to find the odd moments of humour in our posts. Best wishes.

Sent from my GT-N5110

 

[Feline]

My husband was diagnosed two years ago with early onset alzheimer`s disease. We had three visits from a support worker and then nothing at all. No support from any source, no follow up from G.P. nothing. Is this usual ?

John (my husband) has spinal injuries and has also had a triple heart bypass suffers from heart disease has diabetes and also has a slow growing brain tumour. I am finding it increasingly difficult to cope, as you all will be familiar with. And to top it all off we have been told he has to apply for a change to P.I.P.

Where do I go to for help?

Hi Jock01
Welcome,

As usual people from TP have responded well,everybody is so good here. Your local Alzheimers society are quite good aswell, if you contact them, they will offer support and usually know where you can access things you may need. Our local office ring me every three months to see if We are ok and do we need anything that they can help with.
We do however have to look after yourselves by contacting OTs ,Doc's , Community nurses, Care Direct , day care etc. if situations change and need something extra like door alarms,
Inco products, toilet surrounds etc. Support is there, but we usually have to make the first move to get help. Our local community mental health nurse was excellent supporting us straight from diagnosis visiting regularly and helped with applying for day care and CHC when the time came, I do think we had the luck of the draw there!
Best wishes,

 

[pamann]

Hello jock welcome to Talking Point, so much information here from so many wonderful people l have learnt so much, keep posting there will always be someone to give you help and advice

 

[Izzy]

Thanks to all for the warm welcome. I have never heard of Admiral Nurses so maybe they do not operate in Scotland. Been waiting since diagnoses for Adult Social Services to do evaluation and despite repeated requests we seem to slip through the net. I have been in touch with local Alzheimers Assoc; and they (thankfully) are on the case.

Good morning. Sorry. I've just found your thread.

There are no Admiral Nurses in Scotland. Having said that I have twice contacted them by email and they have been extremely helpful. I got a full email reply and the offer of contact by phone. This is their website -

http://www.dementiauk.org/what-we-do/admiral-nurses/

I'm glad you have been in touch with your local Alzheimer Society. Our local Alzheimer Scotland Resource Centre is really good and I'm sure you will get lots of help from yours too.

As everyone else here has said you will find people on TP very supportive.

 

[technotronic]

I was going to apply for Carers Allowance but when I found out it would affect any Attendance Allowance my wife might get if we applied for it first, would be affected then I decided against applying for either.
If new PIP has to go to ATOS to be assessed it'd be a job getting my wife to go in first place n knowing these idiots they'd prob turn her down anyway.
Won't bother with that either!

Know how you're feeling with having to cope alone with no help from anywhere, as have been in same boat since caring for my wife with Onset Dementia. I will cope the best that I can n do my best for her without help if if means crawling to the likes of ATOS for money to help
Not doing to badly at the moment.

Hope that things get easier for you n you do get some help somewhere.

John

 

[Lilac Blossom]

Hi Jock - Welcome to TP xx

I care for OH who has vascular dementia. He was already housebound due to a number of health problems including spine crumbling as a result of treatments for leukaemia, so, poor mobility.

It's good that you have Alzheimers Scotland where you live - they are a good distance away from us but I got a phone number to call if I wanted to chat. We were promised visits from a Post Diagnosis member of AS staff but this has been delayed due to new recruitment and training. Have you been offered that? It seemed like a good idea to me - someone popping in for a chat over a cuppa, the opportunity to ask anything about dementia, so I hope it does happen sometime soon.

 

[Chuggalug]

I was going to apply for Carers Allowance but when I found out it would affect any Attendance Allowance my wife might get if we applied for it first, would be affected then I decided against applying for either.
If new PIP has to go to ATOS to be assessed it'd be a job getting my wife to go in first place n knowing these idiots they'd prob turn her down anyway.
Won't bother with that either!

Know how you're feeling with having to cope alone with no help from anywhere, as have been in same boat since caring for my wife with Onset Dementia. I will cope the best that I can n do my best for her without help if if means crawling to the likes of ATOS for money to help
Not doing to badly at the moment.

Hope that things get easier for you n you do get some help somewhere.

John

Sounds like you've been caring for a long time too, John. Same for you, all alone

You're welcome to PM any time if you need a chat. Things have moved on a bit for me. Currently considering getting rid of old sofa. That'll be a mammoth job for me, all alone! Meanwhile, hoping all is reasonably well with you.