Say hello and introduce yourself

[HarrietD]

Welcome to Dementia Support Forum

However you have been affected by dementia, our community is a place to get support from others.

Say hello

This is our welcome thread - the place many members start. Our volunteers and regular members are here to say hello to you and to welcome you to our community.

This thread is for you to say hello and tell us a little bit about yourself, and your connection to dementia.

Whatever you're facing today, we hope you find our community to be helpful and supportive.

How to use the community

You can find out how to navigate the community here.

Any questions?

If you have any questions, you can email us on DementiaSupportForum@alzheimers.org.uk or Use our Contact Form - we're here to help.

Harriet

 

[Bennell]

Hello! My 90 year old Mum has just been diagnosed with dementia and I m finding it hard going. Glad to be here to learn.

 

[Izzy]

Welcome to the forum @Bennell

I’m sorry to hear about your mum’s diagnosis. I’m glad you’ve found this forum - you’ll certainly find lots of experience and support here.

 

[viv1818]

Hello and thank you for accepting me. I have a husband with dementia. He is 86. I am fortunate to be able to have him in a good long term care, memory care unit. He is fading very quickly. He was only diagnosed a year ago. He has cachextic dementia. Like the great loss of weight and muscle and bone mass plus the shrinking - he is now at the end. Or maybe not. God decides. However, his illness plus a host of other issues have me sinking fast.

 

[Louise7]

Hello @viv1818 and welcome to the Dementia Support Forum. So sorry to hear about your husband but you will find friendly support here from people who understand, and there is always someone here to listen.

 

[jen2166]

Hello, My name is Jennifer.

My married sister who is 71 years old forgot my birthday 11/25 and hasn't communicated with me in over a month. I am 66 years old and I have seen the signs, but it has never been like this. We use to be very close,
I start therapy in the upcoming weeks and look forward to it.

 

[Louise7]

Hello Jennifer @jen2166 and welcome. The situation with your sister must be a worry, has anyone been to check in on her to make sure that she is alright? I hope that your therapy will help during this difficult time for you. This is a supportive place and there is always someone here to listen.

 

[How2HelpDad]

Hi, I read somewhere to not correct a person with Dementia if they are talking about things that are not true. Is that correct?

 

[Izzy]

Welcome to the forum @How2HelpDad.

I think it is better to not correct someone with Dementia. You might find this link helpful -

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[Bichonjan]

Hello

Ramblings of a broken woman

My husband has been waiting for an appoointmen with the memory clinic since February 2023.

Last weds paramedics referred him or rather us for Crisis help. The GP next day spoke to Social Services confirming we were in crisis and therefore needed help.

My understanding of crisis is that help is needed NOW.

Nothing - I cannot cope I dont know what to do, I dont know how to handle his distress. I spent Monday on the phone Tuesday on the phone.

Social Services told me agencies they use had no one and they were putting the care needed out to brokerage [whatever that is] how long do ~~I have to wait for support/help. It could be days/weeks before any help arrives.

I cannot sleep, my heart is broken. I can do house work its diverting. I cannot cope with the pain seeing my once strong capable husband reduced to this. Death would be better.

I have spoken with Carers and they are ringing me back today.

I found a registered PA who I have known for many years and TRUST who is willing to help privately £15 per hour but I cannot fund that for long, and I asked Social Services if they could fund that. Probably not.

The PA is a person my husband knows and is extremely happy with - why can SOcial Services not support me on this? It would solve the risis dilemma and give them time - red tape grrr.
.

Love to all.

 

[Grannie G]

Welcome @Bichonjan

All I can suggest is you contact the Dementia helpline.

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

It`s not clear whether or not your husband has a diagnosis. If he does have a diagnosis you might be entitled to Direct Payments.

Apply for direct payments

If you get help from social services, direct payments let you choose and buy the services you need yourself, instead of getting them from your council

www.gov.uk

 

[QwertyAsdf]

Hello! My 81 year old mother was diagnosed w dementia about a year so. I am finding it hard going but ploughing ahead. Glad to be here to learn. Thank you all for this support forum--it is a Godsend

 

[Izzy]

Welcome to the forum @QwertyAsdf.

I’m sorry things are tough for you. So glad you’ve found this forum though!

 

[QwertyAsdf]

Hi, I read somewhere to not correct a person with Dementia if they are talking about things that are not true. Is that correct?

Yes, i am told that we should validate (that is, agree) where there is no harm, but respond with reality, where they could cause harm (for example, put metal containers in a microwave). Not easy to go against the grain to basically tell the truth. My mother often walks around asking where her mother (long deceased) has gone and i find that the best answer is that she has gone out to meet friends. No point telling her that her mother has passed and give her a shock

 

[Ryn66]

Hello, my 87 yr old is in a care home, in a NHS nursing care room until he is stable enough to come home. He has vascular dementia with jerking movements and mobility issues. He can stand up for a period of time with a standing aid (molift). He was admitted to hospital initially with an UTI but they were also concerned about his loss of mobility and I think they were worried how we were coping with him at home. My mother has just had a hip replacement. I am the main carer but also have a full time job, my brothers and sister are nearby and support as well. We have had a lot of support and been given various aids after OT visit. We are nearly at the stage of him coming home. OT has suggested 2 carers 4 times a day for him. We are still waiting for his attendance allowance. Mum got hers 3 months ago. How do we know we are doing the right thing for him? It’s all so stressful.

 

[Bunpoots]

Welcome to the forum @Ryn66

I was never sure if I was doing the right thing for my dad but the people on this forum helped me to see things more clearly. I hope we’ll be able to do the same for you. Feel free to post post any questions you may have and perhaps start your own thread when you feel ready.

 

[Ryn66]

Thank you, just feel so lost in the whole process and wanting to do the best for my lovely dad.

 

[Gandalf's Helper]

Hello, my name is David, I am 64 and I am caring for my 76 year old wife who has vascular dementia, I noticed something was not quite right back in Nov 2021 and had a formal diagnosis in Mar 2022, since then she has gone downhill quite rapidly and is probably in the mid stages, like others here it is heartbreaking to see them go from confident outgoing talented people to what I can say is an empty shell. The woman I fell in love with has gone, and I am saddened because I was hoping to spend our remaining years on adventures together.

 

[Izzy]

Welcome to the forum @Gandalf's Helper.

I’m so sorry to read about your wife. I’m very glad that you’ve found this forum though. People hear understand and are always ready to lend a listening ear and offer support.

 

[Gandalf's Helper]

I am in the same position here, wife of many years has gone and I’m left with a shell of a person. We thought retirement would bring happiness but, it’s just a miserable existence for us both. She started with memory problems just after us catching covid in 2020, since then is been a downhill slope. Sadly I feel she was diagnosed with Alzheimer’s and the way I feel is dumped by the nhs, memory clinic etc.

If you feel anything like I do, then god help us. Sadly he’s not helping either.

I know how you feel and it is so so disheartening, and it is difficult sometimes to be strong. You are not alone my friend, it seems there are many of us coping with our situation, but please do not forget your own well being.