What next?

Feeling lost

Registered User
Jan 2, 2015
2
Sheffield
I am not sure which chat to join - those with a recent diagnosis - yes, Mum was diagnosed in June. Or middle stage disease - because to be honest she is going down so quickly we are nearly there too!
My mum has a medication call only in the mornings so far - and when I did arrange more care when we had a recent break - they didn't do anything from my suggested list of activities - but rather wrote in her notes ''offered Ann help with a bath / shower but she declined '' then they left. She is ok with hygiene stuff (mostly) - it's what happens next that she struggles with!
Over Christmas she has been forgetting that we are collecting her, even with a phone call minutes beforehand, bringing 3 handbags containing a bizzare mix of things and forgetting to eat in between our activities.
I don't think she is going to manage at home much longer as she has really nose-dived with things like food prep, remembering to be ready for her activities, social skills and I am wondering what to do next? I am an only child and my Dad died 2 years ago, my husband and daughter are supportive. Her name is down for sheltered housing but even if she gets a place I'm now doubting that she would manage new surroundings and equipment only to possibly have to move again ... (have read comments like that on here too). We're willing to move and have a self contained unit made for mum but as we both work I am also doubting the advantages of this .........
I'm thinking more staff and people to do things for her? A day centre?
Thanks for reading - feeling low and having a cry with anyone who will listen today including the lady in the chemist!
 

marionq

Registered User
Apr 24, 2013
6,008
Scotland
Sheltered housing by itself is not the answer for those with dementia. She would still need carers in just as at home and they would still leave her unwashed if that is what she wanted. They are safer places and have staff on hand in emergencies but for serious memory loss they are not the answer. My SIL is in an excellent one but those with dementia move on.
 

chris53

Registered User
Nov 9, 2009
2,929
London
Hi Feeling lost, a warm welcome to you Talking Point:) so sorry you are feeling so low today, the world of dementia suddenly is overwhelming, i assume that these services are supplied by SS? they really need to do another assessment for mum and provide more care for her, it's always so hard before and after holiday times to get things moving but please stress that she is a vulnerable person and is "at risk" and they need to look at mums way of living now as an urgent request, please have a chat with her doctor, they being "all powerful" can usually push for help from SS and a referral from a doctor seems to move things along more quickly! keep a diary on what mum is not coping with and the challenges that both she and you have, I guess mum has been given medication which may help her and if so that may need a bit of adjustment, and just to make sure get mum tested for a uti(urine infection) as this can cause total confusion:eek:
I hope you get practical help soon which will ease your mind, and am sure someone will be along here later with some pearls of wisdom to offer, above all here is a safe place to unload,rant or rave...full of understanding and support by us as carers and people who care, so keep posting and take care.
Chris x
 

memaggie2

Registered User
Nov 9, 2014
60
scotland
Its difficult caring for someone with Dementia at home ...If you have mum live with you eventually you will have to leave work as she will need 24 hour care. If you are unable to do this then think of the other alternatives.

As you say moving your mum into sheltered accommodation would probably cause more problems than it solves.

I live in area with fairly good social care but you are unlikely to get carers who will do much more than the essentials.... ie personal care ( they can only encourage not insist ) meal prep ( this may be heating something in the microwave ) giving medication, putting someone to bed .

Social services will be able to arrange day care if this is available in your area but your Mum will have to want to go ( Mine didn't ).

Speak to a social worker and see just what is available in your area . You could ask about Self directed care ( you get some funding to employ someone yourself who will do what you wish )

The need for 24 hour care is usually triggered by the risks of living alone , wandering and getting lost, inviting strangers in , burning things , extreme distress if left alone, are some things which would be considered high risk.

My mother stayed at home until almost the end despite her dementia because she was happy just to sit and wait for someone to visit

I'ms sorry not to be much help , its so hard coming to terms with this dire disease , and dealing with each problem as it happens is often the best one can do

regards

Maggie
 

Yorkshire Girl

Registered User
Jul 16, 2014
21
Hello Feeling Lost,

I wish I could sit you down and give you a cup of tea and a hug. Alas I have no words of wisdom as I'm in a similar position to you: my mum has also only recently had her diagnosis and I am the only child (although she does have two step children, one in particular who is happy to try and help). The only suggestion I can offer is - does your mum's memory clinic (or doctor depending on who gave her the diagnosis) offer any "living well with dementia" workshops? We were offered up to four group sessions when mum was diagnosed (the offer was sent by post after the diagnosis) and it was useful to get to meet a few other people in the same situation and also to begin to find out about specialised activities. Following on from our sessions just before Christmas mum and I are meeting a volunteer from one of the local organizations/charities in a couple of weeks and she is going to take us through all the various activities and support they offer.

We too have thought about the possibility of mum moving to be with us (especially as she was so content and relaxed being with us all through Christmas) but the lovely people here have pointed out that as we are also both at work all day in many ways mum may be worse off than being in her own home.

So I'm not sure what the answer is - but I will post more if I find out anything that I think will help.
 

Feeling lost

Registered User
Jan 2, 2015
2
Sheffield
Thank you x

Thank you so much, Yorkshire girl (I would have dearly loved that cuppa and hug), Maggie, Chris and Marion - some really good advice there and I am so glad I accessed this site today. I'll keep you posted - and feel for all of you going through or having been through this too x I have also learned that the delusions etc Mum is having about ''being in a different house all night'' are a recognised symptom - visuo-perceptual stuff. And also that where the 7 stages of Alzheimers are concerned, sadly she seems to be steaming along and is already somewhere between 5 and 6!
Chris I think I am thinking on the right lines then - it helps that I'm a community nurse & I had thought of the UTI thing (as she has had one previously, resulting in increased symptoms) and I've dip-sticked her urine myself - it's fine at the moment. Made her a GP appointment, she has private carers, but actually the organiser has phoned me herself - recognising a notable deterioration in her. I have also rung our local helpline and getting a call back on Monday and another from Memory Clinic - am hoping for some advice on day centres and also which organisation would be best for ''stepping things up a notch'' - clearly not the one she's with now! Have got a keycode box, a milkman, lasting power of attorney is a work in progress - just need a month off work to de-clutter and re-organise her flat! I expect you have all found that juggling work, family life and caring is hard work and I have on occasion dropped some spinning plates.
Thank you so much again all of you. I think this interaction is going to help me a lot, and I wish you all as Happy a New Year as you can manage! x