Feeling confused and overwhelmed

[Rienij70]

I am carer to my husband who has a multitude of things wrong with him. Heart disease, COPD, Parkinism vascular dementia and tested positive for lupus. I have registered on advice of a Neuro nurse to be his carer. I find it overwhelming sometimes, by the lack of support. It seems you are on your own. I cope reasonably well except when I am not well. Ihave angina and A fib episodes. Can someone tell me what help or support is available? I sometimes just want someone to listen to me. Does that sound reasonable? I know the charities like Age UK suppose to be able to help. I really would appreciate some feed back. Thank you Rienij

[sassy59]

Good morning Rienij, that’s an awful lot to be dealing with. Can you speak with your GP and see if he can offer guidance? There is also the Alzheimer’s website which may be of help. I also wonder if you have access to respite care so you can get a break.

Please let us know how things go and do stay in touch. Thinking of you and your husband. Xxxx

[Rienij70 in reply to sassy59]

Good morning sassy59. Thank you for your reply. Some sort of guidance is what you need. I cope up to a fashion mostly, but when I am not feeling well myself it becomes difficult. I try to just take one day at the time. But thank you for your support. Rienij

[Bananas5]

Hello Rienij70 and welcome to the world of unpaid carers.

I don't know where you live but there may well be support groups in your area.

The Princess Royal trust for Carers, as it used to be known, was an excellent organization for supporting carers. I believe it has now amalgamated with Crossroads.

Your social works may well have a link to anything in your area. Alternatively you can google it and will tell you your nearest one.

May be a starting point and if they can't help they could direct along the path.

There is also Carers UK which is nationwide charity. They could be another contact. I have details if you want.

And of course...always here if you want a shoulder!!

x

[Rienij70 in reply to Bananas5]

Thank you, I got the booklet for carers Uk, we live in Banbury. The number they give for Oxfordshire Dementia Services doesn’t work. About three weeks ago I did speak with a GP while I was there for my NRI check. She contactacted social services, who true her word contacted me within an hour. And she mentioned that she would get in contact with them. Haven’t heard a thing since. But why do we have to rely on charity’s for help with the caring of a patient. It all seems so wrong. I was told by a Occupational Therapist in the memory clinic that there were dozens of events here in town. I couldn’t even find one for people with dementia. I just get so frustrated, even thought about starting something up myself. Thank you for replying and listening. Rienij

[Bananas5 in reply to Rienij70]

You are welcome. Not sure how old your husband is but I have a dear friend whose husband is in final stages of Alzheimer. He is 58 and there is absolutely nothing.. Even care homes he has now had to go into will not take under 65.

If your husband needs personal care...bathing dressing etc then social works will do an assessment of his needs. As his carer they must do you too. BUT....and this is where it all falls apart...they are likely to say no services available. Believe me I have been through the system zillion times when we lived in UK. Even when I shattered my ankle I still got no help!

It is all do to lack of funding..

Let me have a look and see what I can find out for Banbury. If you don't mind that is?

x

[Rienij70 in reply to Bananas5]

Hi Bananas5 thank you. Hope you find something for me. Rienij

[Bananas5 in reply to Rienij70]

Try these for now. Still waiting for answers from other carers...think they have gone shopping!

x

livewell.oxfordshire.gov.uk...

livewell.oxfordshire.gov.uk...

[Hidden]

Oh you poor thing. Ask at your local library, they usually keep a list of all organisations. There are many things for dementia sufferers in my area and I am sure there are where you live too, you just need to find them. We have dementia cafe, sing-a-long afternoons, outings etc. Phone Social Services again and tell them you need to know details of everything suitable for you and your husband. Good luck

[Hidden]

I just looked up 'dementia service Banbury' on google and got quite a few suggestions including a dementia cafe. Have you applied for everything you are entitled too? Ask for a Carers Assessment and someone will come and talk you through what is available

[Rienij70 in reply to Hidden]

Hello, thank you for replying. I found that dementia cafe too, which is not far from here. They meet apparently once a month. There used to be something right around the corner from here but is now closed. As far as I can make out, you turn to Aged Uk. But they are very expensive, charge £17.00 per hour minimum. Just to keep him company and make a cup of tea. He doesn’t need much help with ablutions yet. He is very slow, but with a little help gets there in the end. All ready pay for help in the home and garden to keep things together. Pay for his toenails to be cut etc. It is never ending. But it is more moral support we really need. As we seem to struggle without knowing what happens next, if that makes sense. It is all such unknown territory.

[MAS_Nurse]

Hi Rienij70, as Sassy59 has mentioned, this is a lot to be dealing with. I have done some research for you and the following information may be useful-----

Dementia advice and support/ Ofordshire County Council

www2.oxfordshire.gov.uk/cms/content/dementia-advice-and-support

specialist advice in Oxfordshirde for people with dementia and their carers

dementiaoxfordshire.org.uk

There is a Dementia UK Admiral Nurse service in Oxfordshire. Please call 01993 323 232 or

01993 776 319 for more information

AGE UK Oxfordshire www,ageuk.org.uk/oxfordshire-------has some very useful information and a video which explains this.

British Heart Foundation bhf.org.uk

Sometimes, it can be overwhelming to receive a lot of information, but I hope this is helpful to you. Other members have also posted a lot of helpful information. Please also look after your own health and do stay on the forum for help and support. Best wishes to you and your husband.

[Rienij70]

Thank you, will investigate these things. Have to be a bit careful as my husband has it in his mind that he will be put into a home, although I keep telling him that homes are to expensive. Garage for him! 😉 You see I have problems but am under the care of the consultant in the hospital. But there is nothing for him. So we feel our way blindly. But I will do my best to find the right thing for him and me. Once again thank you.

[Bananas5 in reply to Rienij70]

From my contacts. Much will be repeated but hope something helps.....

If you have questions or concerns about dementia, Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information and support.

Number above can help, plus direct her to more local support.

Also Alz society has their own support from and it is fantastic

Talking Point

forum.alzheimers.org.uk/?_g...

Found this one but only takes place monthly

livewell.oxfordshire.gov.uk...

If they type in their address or postcode on following link, will show local services

alzheimers.org.uk/find-supp...

This one is for Admiral nurses via Dementia UK

dementiauk.org/get-support/...

If she requires more just let me know

x

[Rienij70]

Wow lovely thank you.

[Hidden]

Hi Rienij70

You've had some really great responses to your questions and there's nothing that I could add that could be any more helpful.

So, just wanted to send my good wishes to you and I hope that you find your way through this.

Please do come back and let us know how you are managing to get along, and what help you've been able to access.

It's so good to get feedback that can help others in a similar position.

Meantime, thinking of you and sending good wishes for some success in getting answers and help in your difficult situation.

Take care.

[Rienij70 in reply to Hidden]

Thank you, will wade my way through it all. And keep you posted with any results.

[Rienij70]

Thank you.

[lell1]

Hi there rienij70! How's things going? Have you found any support out there? I have been struggling emotionally myself and tend to tune out til strong enough again so not really been on the forum for a while. Have you found anywhere where you can just be you? I have been writing down my thoughts and the struggles with dementia etc., and find that this sometimes puts things into perspective for me. It's a bit of a plaster on a seeping wound, but short term it works and buys me that head space we all need. The problem with trying to get support is that it's yet another ball you have to chase!

[Rienij70 in reply to lell1]

Hi Lell1 glad to hear from you. Was wondering how you were coping. I just received a phone call yesterday from the Oxfordshire Dementia Services. And kept apologising for the mess up. They are coming next Thursday to have a chat. So that is exactly 13 month later. Not bad eh. I cope sort off. But when I am not feeling to great it becomes difficult. My garden is my heaven. Love Rienij 😘

[lell1]

Hellooo! Bit like waiting for carers assessment, that was almost a year so I just gave in n got on with stuff. I asked at the dox 2weeks ago about booking a room out for a meeting with care services, they checked whether it was for a group or 1 on 1....heard nothing since. Sometimes wonder if dementia is just a code for 'hide' for NHS/social care??

Isn't it great to be able to potter outside again? Sanctuary (in the style of quosimodo?!!)

[Rienij70 in reply to lell1]

That is what I do. Just get on with things, as best as I can. Juggling my own health and looking after my husband. Thank god it is summer. My garden swing and a book, heaven. My oh in the shade and fast asleep after 10 minutes. Bliss.

[lell1 in reply to Rienij70]

Am jealous now! My dad comes outside maybe for half an hour then back inside (it's either too hot or too cold, depending on where he sits!) Then I have to keep checking he's ok for a drink or food so am up and down the garden!

Did you manage to get your 'me time' walks sorted, or have you succumbed to the easiest option??

[Rienij70 in reply to lell1]

I am just juggling along, had a few problems of my own. It sounds daft I am not throwing in the towel. Next week I shall have some idea of what help is available. But I am not paying someone £ 17.00 per hour to sit with him and make him a cup of tea. Or hand him a pre prepared meal. That is outrageous. I am going to have a talk with the Neuro nurse, who is due next Monday. Nd of course the dementia people as well. I went for a scan last Monday and all that went wrong. Ended up in A&E. My GP rang me this afternoon and suggested I get in touch with the cardiologist. So have spoken to his secretary. Waiting for result of that. Still think retreating into the garden is my answer. But I know what you mean about being hot or to cold. I get that all the time. When it was 26 dergrees outside he turned the temp. Up indoors! Wow I got a lot of my chest. Thanks Lell1 for listening. Rienij

[lell1]

Omg, are you ok gal? Doesn't sound like a day on the beach for you! I would usually turn the heating off about April...but he still saying he's cold when it's 30 inside! Maybe they misread what the body is telling them? Am now having to say things a little slower and at least twice, so that he can process what I'm saying.

Know what you mean about the garden being a small haven in a whirlwind journey though. Without my garden I would end up getting snappy, and that wouldn't be fair at all. Does your oh watch the same programs over and over? I am now almost word perfect on Poirot, Lewis, Endeavour and Heartbeat!!

[Rienij70]

Catch up with you later just got out of the hospital. Was taken in last night with chest pains. Xx