Newbie here with early onset Alzheimer's Disease

[Daryl2510]

British Gas discount!

I have received a letter today from British Gas, stating that I qualify for the government's Warm Home Discount scheme with their company.

I have got to take the letter, along with some ID, which I have, to the post office and they will credit my electric key with £130.00. It has come as quite a shock, as I didn't realise that I had applied, or indeed enquired about this... but it is a lovely shock, and will certainly come in handy, especially as the weather is still cold on this official first day of spring!

It means I can now channel spending more money on my gas a little more and have the central heating on more often, instead of just the electric fire!

 

[Daryl2510]

Mam & Stepdad in respite

Well, after over a year of having to cope with my own conditions, besides having to visit at four/five times a week to my Mam and stepfathers home to give them medications that their carers can't give them... we have finally been able to them into respite care for four weeks. It will be a very welcome break, as I can now actually visit them as a son, and not as a carer.

Their flat is being renovatd by the local housing association, and it will take a least a month for it to be completely done, so the respite care has made things right for all concerned.

It will also give me a desperately needed rest, and I shall be able to recharge my batteries and hopefully be good to go when they are let back to their home.

I have also had a visit last week from my Social Worker, who has gone through my details and was a good listener.

She has recommended that I to have some kind of respite care each year, to give me a complete break from my environment, and help me to react with other people in care at my age with my conditions.

Something I certainly will look forward too!

 

[FifiMo]

Hiya Daryl,

Good news that you are getting some respite. Please make sure you take advantage of it and make yourself the priority for a change. You seem to have found yourself with a great SW too who seems to understand what would be of benefit for you too. Glad that positive things are happening for you.

Have fun over the next few weeks!

Fiona

 

[Daryl2510]

Respite care for me...

I have had a telephone call from my Social Worker today, telling me that I AM going into respite care for a couple of week from the 10 May... the bloke from the care home has just telephoned me to confirm meeting tomorrow morning.

I AM now having the same care as what I have struggled so long for to get for my Mam and stepdad - a consequence of showing how tired, rundown and confused I AM getting of late... along with the constant struggle to cope with my Parkinson's Disease too.

Goodness, I sound like an hypercondriac don't I reading that back... Believe me, I'm not - I've always got on with things, but I AM getting a little tired now and the confusion states make it a little more difficult to cope on a day-to-day basis.

But I'm still here, and hopefully will be for quite some time to come!

 

[rjm]

Hey Daryl,

Good to hear that you got some respite sorted out and only a month to wait, that time will fly. Hope you are able to relax and enjoy yourself,

 

[Janandrose]

I was reading your posts and was wondering if your doctor's tested you for Frontoltemporal Dementia, due to your age of onset and Parkinson's (which is very common with FTD). Thought it might be worth looking into as some of the treatments for Alziemers disease are contraindicated in FTD.

 

[Daryl2510]

Carehome assessment visit

I have just had the residential carehome manager call and see me for his assessment, and I have been confirmed for respite care from 10th May...

...his name is Dean, and seemed a real genuine guy, who cares about his residents and their needs... which is refreshing to see with some of the things I have had to endure with my Mam and stepdad's care.

He said I will be most welcome and is looking forward to having me stay there at the carehome on my respite break - so hopefully, things will be fine after a rest and break from it all.

 

[bren10]

Bren10

Hi Daryl. I have major respect for you, you sound like such a brave and grounded chap. I do not know how I would cope in your situation but you are in my prayers and I wish you so much luck in your fight x

 

[Daryl2510]

My Last Post

This is going to be my last post on these forums, as I am finding it difficult to remember where it is, and also adding content that I wasn’t aware was infringing forums rules at the Alzheimer’s Society… I have apologised for that wholeheartedly - it was never my intention.

If you wish to follow my Alzheimer’s progress, then you may access my website, should this be allowed:

www.daryllees.co.uk

I update my page regularly there, and I once again apologise for not following forum procedure with my link to my respite care.

Thanks to all who have supported me here, I really have appreciated your well wishes and support in my continuous battle with Alzheimer’s, both for my myself and my Mam, and my Parkinson’s Disease too…

…Thank you everyone - and goodnight

 

[rjm]

Best of luck Daryl!!!

 

[Izzy]

I hope your respite goes well Daryl. x

 

[winnlet]

Early Onset Dementia

I too have been diagnosed with progressive non-fluent aphasia - that's a rare form of dementia to you and me. I am 65 at present and my speech, my writing and my balance have been affected but it's only going to get worse. It's like living with a time bomb and I think I have been imagining some things that a down to old age but I don't know. My consultant does not want to see me until November and I have an appointment with my GP on Monday. I feel like I have been left until I get worse - there is nothing I can do about it. I'll see what the GP says. Regards Winnlet

 

[embers]

Don't know what's wrong

I don't understand 2 things. The first is what has Daryl done to have to leave the forum but maybe that can't be explained to me?
But whatever it is I am sure that I am more than capable of it

I am not sure if I can continue to write. I just feel that I can't cope any longer with my diagnosis and whilst I have been known as this flippant vain person talking of beauty therapies ect, the truth is I have hit a wall. For the past week I have spent most of my time in tears and the sense of loss of so many things that we had planned for the future with my husband and family now feel never to happen. I had thought that my family history of alzheimers had set me in good stead as I knew what the begining and end could be like, but now realize that I truly can't cope with any of it and what I think I have done is plan a future for a 3rd person, not me. This was never going to happen to me and I just feel grief stricken. I don't know anyone else that has said that they feel like this and I feel weak, and although my husband is wonderful he just looks desperately sad and helpless. I don't know how long it takes for people to come to terms with their diagnosis and after 2 years I know that I will have to accept it but I can't, but what can do about it? Talking to someone isn't going to make me happier about it or am I just being negative? I am sorry to all the people who have said such lovely kind positive things to me but the truth is I am a sham. I wish everyone the support they need and hope they take care of each other.

 

[Izzy]

Embers I'm so sorry you are feeling so bad. I can't pretend to understand what it must be like for you.

I'm sorry i don't know your story well. Are you getting any support for yourself and your husband?

Please try to keep posting. I'm sure you will get lots of help and support here. Take care. x

 

[FifiMo]

Daryl/Embers

Please don't leave. You are the reason Talking Point exists. If there is anything we can do to help you, just let us know.

Fiona

 

[1954]

Daryl and Embers

Keep posting please we are here for you

1954 x

 

[Izzy]

It might be a good idea to contact the Alzheimer's Society Helpline:

Phone number: 0300 222 1122

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365

 

[rjm]

Hi Embers,

Whether you continue to write is entirely up to you, I would hope you do; but, if you chose not to, I do hope you will continue to read and be a part of this group that way. A sham you are not. You have been pushed into a journey, the end of which is not pleasant, and are simply trying to make the best of it that you can. I cannot pretend to fully understand what you are going through, but I have been beside Sharon as she went through it. This disease does not care if you accept it, talking to someone (or staying on here) may help you realise that your feelings are not unusual, nor are they unrealistic. Accepted or not, the ending is bleak no matter how you approach it, that is why (I think) the best you can hope for is to grab whatever joy you can out of every day.

My best wishes to both of you,

 

[beaky]

Hi Darryl

I have only just joined the forum and out of curiosity read back over your last few posts and checked your website. I don't know what you have done to infringe the system, but you can't stop posting. You are an inspiration to everyone, with your courage and cheerfulness in the face of such adversity.

We all need to support each other and you need to keep your access to the support system here as well as cheering us all up.

Beakyxx

 

[Grannie G]

Anyone having problems finding their posts and replies to their posts just need to click on their own names. This will take them to their Profile and a link to all their Forum Posts.