What Next?

[Lady Eleanor]

Finally after bumbling along trying to manage to care for my Mum, my brother & I admitted that we needed help. She was diagnosed with mild Alzheimers in 2015. She is supposed to take I donepezil a day max. strength. So, I went to see her doctor on my own initally because I knew when asked that my Mum would say she's fine & that she cooks for herself, shops, cleans & all the other things she doesn't do!! Which she did when I took her under the pretence of having a general check up. By the way she hadn't been seen by a doctor since her diagnosis 2 years ago. I went back to see the doctor after again on my own to see how she found her.
She had a blood & urine test, was weighed, blood pressure etc & for someone of 83 who still smokes, she is as fit as a fiddle really.
The doctor has referred her to Croydon Social Services. Someone from their Duty Team duly rang me within a couple of days & I had a long chat with her. Quite impressed at this stage. She referred Mum to Telecare for safety in the home assessment & to key safe & has asked if we want meals on wheels for her. So all that is good & I'm waiting for these people to contact me. But, she also told me that they get 200-300 referrals a week & it could be months before she has a proper assessment to decide what level of care she needs.
Whilst the practical stuff above is great my Mum struggles to get dressed now, doesn't eat properly & in the social workers' words has difficulties problem solving. My dilemma is do I wait for social services or do I go a different route & contact a private carers?

 

[Lady Eleanor]

Hi. It's a difficult stage. Will your mother be self-funding? If so, you could go ahead and arrange carers if that's what she needs. We had SS advice and monitoring etc but nothing short of daily carers helped, and that only for a few months. 13 months after diagnosis the social worker had put nothing in writing - no assessment of needs - and we arranged admission to care home.

Thank you. I think we could be in for a long wait so I will look into carers as yes she would be self-funding.

 

[Lady Eleanor]

Crikey, I've just seen the date of the last post! How time flies when you're having fun. Not!
My mother is now having meals on wheels daily at lunctime. Progress we thought, the mess on the floor has stopped so that's good. Today's meal arrived & she wouldn't eat it just had yoghurt.
We've had a social services assessment which I found underwhelming to say the list. Someone from your helpline did warn me it could be a clipboard ticking box excercise & she was spot on. They didn't speak very good english so I don't think my Mum even tried to listen & he kept talking to me & calling her she. She told him she was fine & didn't need any help thank you very much. I had told him before the visit that she definitely wasn't OK. At the end of the visit he said they would have a group meeting to discuss my mother's case & I would get a report. Nothing so far. She is now in a phase of chucking rubbish on her patio. Yoghurt pots, actual yoghurt, unsmoked cigarettes, letters.
My brother went to see her at the weekend & went to her local shops & bumped into her. She had been shopping for cigarettes & bread, neither of which she needed. But, worst of all she was in in trousers & a few jumpers but with a dressing gown over them & odd slippers. We have also heard from her neighbour that someone she knows gave her a lift home a couple of weeks ago because she looked vulnerable. I am mortified because it makes it look as though we don't look after & I can assure you we do. She threw her slippers at me last week & told me to get out. She was in such a strop. This mood of apathy & anger never seems to be far away. In addition to all of this she is not showering. I have cajoled, even said she needs to but I can't drag her to do it. Her daily tablets we do our best with & she is definitely better when she is taking them but when I rang today to get her to take one she put the phone down on me & left it off the hook.
So, although I know she has probably gone past it I have to try carers. At least if they could shower & dress her & give her her tablet. She could take it from a stranger instead of me, maybe.
Any advice would be appreciated.

 

[myss]

Oh my Lady Eleanor, what a drama us carers can go through. I can empathise with the multiple clothing and putting things in strange places, I suspect many others who post on this site can do as well. My Dad's also got a thing that if it's cold outside, he's reluctant to bath and sometimes he happy to do so providing someone's around if he needs help or we have once come down to a near-argument when I've tried to show him that there is hot water for him to take that wash.

How often do you and your brother go round to your Mum's home? It might be that you both have to increase this to ensure she's OK, taking her medication and general tidying-up. If you can't then carers may be helpful here.

 

[Shedrech]

hello @Lady Eleanor
definitely arrange for home care visits, for personal care and to help with meals - you can arrange these yourselves if your mum will be self-funding, and especially if you have LPAs in place

personally, I'd go back to Social Services and update them especially about her wandering (this doesn't reflect on your care; it is evidence of a decline in your mum's abilities to look after herself properly) and not taking her medication, as that is making her a 'vulnerable adult' and putting her 'at risk' - tell them you know that the Local Authority have the 'duty of care' and need to step in to support your mum - make it clear that you want to help your mum but you cannot provide hands on care as you have to work and have other family responsibilities (otherwise they will leave it all to you)
sadly, as you have found, you may need to keep going back to them; be a nuisance

also update your mum's GP - they need to know what her current condition is and especially your concerns about her not taking her medication

 

[Lady Eleanor]

Thank you for the advice. I will go back to social services as I have heard nothing from them since the assessment. I will also speak to the GP to update. Alas, I think we have now passed the carers option. She will have to go into a care home. I am now getting texts from her neighbour saying she has been out in her dressing |& trousers looking for the shops & couldn't find them. Turns out she turned left not right out of her house. For the first time she told her neighbour she couldn't find her house & she didn't lock it up either. She has also been throwing mud & stones at a car that had been dumped outside her house. Luckily no windows broken, thank god. They have now removed it, they buy & sell cars apparently. I have told her that she can't look after herself & needs help & she just got stroppy & threw her slippers again & told me to go away.
The advice I would like if anyone has some is I have a big problem with care homes as she smokes. They won't have her will they? She still hasn't forgotten how to smoke. We rightly or wrongly buy them in the hope she won't go out. That clearly didn't work. Smoking is all she does all day every day.

 

[Lady Eleanor]

hello @Lady Eleanor
definitely arrange for home care visits, for personal care and to help with meals - you can arrange these yourselves if your mum will be self-funding, and especially if you have LPAs in place

personally, I'd go back to Social Services and update them especially about her wandering (this doesn't reflect on your care; it is evidence of a decline in your mum's abilities to look after herself properly) and not taking her medication, as that is making her a 'vulnerable adult' and putting her 'at risk' - tell them you know that the Local Authority have the 'duty of care' and need to step in to support your mum - make it clear that you want to help your mum but you cannot provide hands on care as you have to work and have other family responsibilities (otherwise they will leave it all to you)
sadly, as you have found, you may need to keep going back to them; be a nuisance

also update your mum's GP - they need to know what her current condition is and especially your concerns about her not taking her medication

Thank you very much for the advice. I will definitely start being a nuisance. We're just waiting for a disaster to happen. Getting knocked down by a car or setting the house on fire to name a couple!

 

[canary]

The advice I would like if anyone has some is I have a big problem with care homes as she smokes. They won't have her will they?

Mum didnt smoke, but when she went into her care home there were a couple of people there who smoked. They were allowed to do so, but only under supervision and not in their rooms. They wernt allowed to keep the cigarettes or lighter themselves, but the manager would give them a cigarette if they asked.

 

[Lady Eleanor]

Mum didnt smoke, but when she went into her care home there were a couple of people there who smoked. They were allowed to do so, but only under supervision and not in their rooms. They wernt allowed to keep the cigarettes or lighter themselves, but the manager would give them a cigarette if they asked.

Thank you for that. I'm getting a list of care homes together & have asked for brochures but I will ring as well & ask them about smoking while I'm there. That sounds alright as long as the home wears it.

 

[chris53]

Good evening Lady Eleanor,just a brief "sharing of experience" regarding your mum smoking,my mum in law was a smoker and that was more of a worry then the dementia,for some reason she started to use her lighter to light kitchen towel to light her ciggies,and set fire to her kitchen bin twice,thankfully fire/smoke alarm fitted which if set off went to Linkline,they would call us as well as fire brigade,of course shortly after she was granted a place in our local lovely care home, they do not allow smoking in or around the building by anyone,I think maybe because of the change of environment,and no ciggy smell she stopped or rather forgot she was a smoker,the home were aware she was a smoker

 

[Lady Eleanor]

Good evening Lady Eleanor,just a brief "sharing of experience" regarding your mum smoking,my mum in law was a smoker and that was more of a worry then the dementia,for some reason she started to use her lighter to light kitchen towel to light her ciggies,and set fire to her kitchen bin twice,thankfully fire/smoke alarm fitted which if set off went to Linkline,they would call us as well as fire brigade,of course shortly after she was granted a place in our local lovely care home, they do not allow smoking in or around the building by anyone,I think maybe because of the change of environment,and no ciggy smell she stopped or rather forgot she was a smoker,the home were aware she was a smoker

Thank you very much for that. I am praying for the day she forgets how to smoke. She is lighting the wrong ends & sometimes breaking them in half & feeding them to the birds. So there is hope. Isn't it funny that with everything that is getting forgotten smoking isn't? Perhaps once she was in somewhere she would be like your mother in law.

 

[chris53]

Fingers and toes crossed for you Lady Eleanor

 

[Lady Eleanor]

I have since found out that the assessment my mother had in January was done by someone who only started in January! The report finally turned up 7 weeks later after me chasing it up a few times. If you read it you would think she was fine. I understand from the Duty Team that she could have been de-allocated in view of the report. So, I obviously stopped that. Next week we have a different advanced social worker coming out to do a full mental capacity assessment which should have been done in the first place. Has anyone any advice for me?