Say hello and introduce yourself

[Louise7]

Hello from me too @michele246 it's really hard trying to look after someone when you are working full time but you do need to look after yourself too as it's very easy to get 'carer breakdown' by trying to do too much. If the local authority are providing your mum's carers then you could let them know that you need more help and can request a new care needs assessment for your mum and also a carers assessment for yourself (see factsheet below). It can seem a difficult thing to do but you need to be very clear about what you can and can't help with outside of work otherwise social services will leave you to it. If your mum is paying for her care herself could you perhaps arrange for more help, as that might help to relieve some of your worry and stress. Age UK also offer a befriender / home help service in some areas so that might be worth looking into. Don't feel that you have to struggle on alone, there is always friendly support here from people who understand.

Home help services | Age UK

Local Age UKs offer a variety of help at home services, doing cleaning, ironing, gardening and other simple tasks around the home.

www.ageuk.org.uk

The care needs assessment: support for people with dementia

This page looks at how a person with dementia can get a care assessment, who does an assessment, how they are carried out, who makes the decision, and tips for making the most of the care needs assessment. It also explains the eligibility criteria.

www.alzheimers.org.uk

 

[SherwoodSue]

Hello.

Like you my mum, in her 80s has COPD , now bronchiectasis and also vascular dementia. Mum couldn’t cope talking to doctors as she wouldn’t remember the main points of the consultation.

I have an invisible brother also, care wise. Plus another brother who gets mums groceries, bless him. There the similarity ends.

I have retired early so unlike you I am not trying to work full time. It’s a LOT. Do take care of yourself.

 

[tonebear]

Hello I’ve been reading posts that I can relate to on and off but thought it’s time to post and join the group officially.
My husband was diagnosed a year ago with Alzheimer’s and he’s deteriorated so much over the past few months. As a newbie here, I find it really helpful seeing the answers to questions I could have posted myself. But I also find it hard to read that so many people have been going through this daily trauma for six or seven years and it makes me feel so depressed about what the future holds - how do you do it year in year out and have any quality of life for yourselves?

I find the, at least partial, answer is just do don't think of the future it's too frightening.

 

[Chizz]

Hello I’ve been reading posts that I can relate to on and off but thought it’s time to post and join the group officially.
My husband was diagnosed a year ago with Alzheimer’s and he’s deteriorated so much over the past few months. As a newbie here, I find it really helpful seeing the answers to questions I could have posted myself. But I also find it hard to read that so many people have been going through this daily trauma for six or seven years and it makes me feel so depressed about what the future holds - how do you do it year in year out and have any quality of life for yourselves?

Hi @Gittel
As @tonebear says, you just do. I agree thinking too much of the the future doesn't help and is not what I want to concentrate on. My OH has been my OH for 56 years - a whole lifetime! She needs me now more than ever, even if I can't make things right, I can try and make her safe and as comfortable as the circumstances allow. It's not just "how to you go on" its more that I couldn't not go on doing what needs doing. Yes, my life is her life, and I've accepted that (as no other choice helps the situation).

Sometimes I find catharsis in a little poetry - such as:

Why can’t time stand still?



I love my love, and I say so,

That’s good enough for her for now;

It’s something I want her to know,

For long ago I gave my vow.



The more you know the worse it gets,

How and when and what will unfold?

Not a worrier, now I fret,

I fear for what the future holds.



You’ll notice I did not ask why,

No, never an answer for me

Well, there maybe, but it’s a lie,

Researchers still looking you see.



The less she knows, better maybe,

How and when and what will unfold?

It’s whatever will be will be,

Future’s nothing to her, I’m told



My love loves me, and she said so,

That’s good enough for me for now;

There’ll be a time when she won’t know

What words to say or even how.



By Chizz

Jun23

©

 

[SherwoodSue]

🥲

 

[HarrietD]

Thanks to everyone who posted on this thread, and thank you @Chizz for sharing your beautiful and poignant poem

You can find our latest welcome thread here.