Where to get help??

[Sunny67]

Dad was diagnosed with Alzheimer's last year. Step mums memory is rapidly going down and I'm going to the doctors next week
No help has ever been offered to dad after diagnosis just pills. They are both on lots of meds which I sorrted with the chemist to be in weekly blister packs but they keep forgetting to take them
They could do with someone going daily to check on them, maybe an hour a day. Non of us are that close to be able to do that. Who's best to contact for this? I don't know if it should be the council, age concern for advice or what? They don't have attendance allowance or anything and dad just seems to have been forgotten after the initial checks
Thanks

We possibly all need training on how to be firm and assertive with our parents whilst still remaining respectful.

It is very difficult, both for them and for us, yet roles need to change. You have enough on your plate and can't afford three days and emotional fallout, nor can you run around at the crack of dawn delivering medication.

Inevitably even when care is in place there will be gaps, and an expectation you pick up the pieces. There will be plenty enough of interesting problem solving. (How to get heating when my mother kept switching the boiler off at the mains, meaning the timer clock was all over the place, how to pursuade her to have showers when she could no longer use the bath etc.) Ideally they will end up with a care package which provides good all round support and so limits your role to being a daughter and things you want to do (shopping, finance etc). Plus with permission from your parents to take over things they can no longer do, including organising home maintenance.

SS ought to be prepared to send someone round to review their home, and recommend adaptations. As well as the standard rails etc, you should ask about smoke/fire alarms, key safes and panic buttons. Consider if gas can be disconnected to everything bar the boiler. Tell your parents it is not working, or that "the lady" said. Then buy a microwave and some frozen ready meals, for "till the gas is fixed". Ask to borrow your dads tools, and then dont return them. Ditto car keys?! Blame "the lady" or "the doctor" if things like decluttering need to be done. Use your husband or a family friend if you need to tackle difficult topics like POA or taking over finance and setting up a mail redirect. They dont have the same emotional baggage and so are more able to come across clear firm and logical. Or in my mother's case, men's opinions carry far greater weight.

Look closely to try to spot where they may have lost capacity. Is there a pile of untouched paperwork? Are they able to change TV channel or is it simply stuck on BBC1. (My mother insisted on Sky when she moved to her sheltered flat which ended up being really complicated with me having to get specialist satellite people in, yet I then discovered she simply switched the TV on and thought she was watching Sky. I have the idea that I might switch the channel from BBC1 to Channel 5 and see if she comments about the change in programmes.) Are they cooking/shopping/washing/laundry/cleaning/able to use the heating/seeing other people like friends or neighbours.

Make sure that any support they need is fed into the assessment. Also apply for Attendence Allowance, as this will give funding to plug some of the gaps plus open the door for Council Tax exemption.

It is tremendously difficult for older people to accept care, the loss of independence, and having people "invade" their home. Inevitably it will be seen as part of a downward slope, to be resisted at all costs. In fact having the right support in place is liberating as it allows people to use the capacity they have, with the stress and worry. The transition however is difficult. The only advantage of dementia is that once battles are fought and won, they are forgotten.

And join us on the longer support thread. Its a long journey and not easy.

Thanks Notenoughsleep
I'd thankfully sorted the car a while ago, it had a flat battery so i let it stay in the garage until they decided to sell it. It took a few months befire dad finally said for me to get rid of it.
They have sky which I can't tell you the amount of calls I've had about how to switch it on. They've haf Sky forever and it seems to have settled down again
The gas thing I'm not sure what to do for the best. They have a gas hob a gas Hester in the dining room and a gas fire in the front room. The boiler is only a water heater as they don't have central heating but electric storage heaters which are over 30 years old. They have a microwave but I've yet to tackle the ready meal thing. they are both very plain eaters dad especially, can't do with the smell of cooked onions, garlic or spice
More a bacon and egg man. Though at the moment he'd rather have a biscuit than anything
British Gas had suggested them having central heating fitted and a new boiler but I couldn't see them having the upset, they couldn't stay while it was done then it would need replastering then decorating
It won't be difficult to borrow some if dads tools now as since he thought people were taking them from his locked garage he took them all into the house and had them laid on towels, perfectly straight,in a room, looks like an operating theater!! They do need a personto look at the house through fresh eyes. The stairs are quite steep and dad has fallen down before and as DSM has osteoporosis I think a stairlift would be a good idea
The house is well over 40 years old and only the kitchen extension has a modern fuse box the rest of the house is the old fuse board and the lights aren't earthed. I'd like to get them in to sheltered housing.

Sheltered housing with a 24 hour warden is fantastic. It means that you are not first port of call when there is a problem. It is also more future proof and means, having made the move, my mum will avoid a home for far longer. She has the option of a cooked lunch, plus there is a laundry service so she has effectively given up using her kitchen.

Could you:

1. identify local options. Note there is a huge variety. My mother is in "very Sheltered". Avoid "retirement living" as it will not provide enough.
2. discuss these with Social Services, especially if you need them to fund. If funding will be through the proceeds of your parents home, they ought to be helpful. My mum had to buy her flat, but living costs, incuding a daily carer, are only a fifth of the cost of a private care home.
3. ask social services for a home assessment. If they recommend adaptations there should be grants.
4. then discuss options with your parents, laying on thick the amount of change/adaptation SS recommend. A good argument for sheltered housing which your dad might accept is if one were to die or become more incapacitated there is support on site, and social events, for the other. Much easier to make the switch before rather than after a bereavement.

My mum moved after a fall, when she clearly could not stay in her old flat. I let the latter as the move was only supposed to be "temporary". The amount of maintenance catch up and decluttering was extra-ordinary, and took three months. I could not have done it if she was in situ. If you do try though, what about a "respite" stay in a local care home whilst essential works are done. Some sheltered hosuing also allows trial stays. Who knows you may even find that they enjoy being within a community.

Thanks again Notenoughsleep
I will ask SS about the sheltered housing. I've looked on the Internet but there wasn't anything near where they live but the council should be able to tell me what is around
They would fund themselves, have their own home plus savings. I've just had an email from gateway which said they were putting some information together of services that are available to send me but no mention of a care assessment which is what I've asked for.

Ahhhhhh!!!!!!! Just had a call from gateway. As DSM doesn't have a diagnosis of dementia they have to check with her before they can do a care assessment as DSM is classed as dads carer too they check I with her if she's coping with him.
Oh yes everything is fine! No problems at all!!!!!
Can't think why I would call them and tell them they aren't managing, in fact DSM said she was very shocked I would do such a thing!!
When the lady asked her about the medication problems DSM said there had been a slight mix up but it was all sorted and that the chemist were very helpful in sorting her out and she would just call in if she had a problem.
I'm

Oh Sunny I do feel for you This is the problem , people can present do well. Social Facade or something like that it is called.

If I were you I would ring the Pharmacy and ask them to make an official log of the problems which I guess they will already have plus you keep a diary.

Ring back the Gateway lady and say you are very concerned about their welfare. DS may present well but I your opinion is in denial and you are concerned regarding your Father's safety, cam they see a way forward from here?

I'd also put in a letter to DS M'S GP voicing concerns and giving examples of past issues . Think paper trail

Thanks Sugar. The lady at gateway said they couldn't do anything as DSM hasn't been diagnosed with a problem. She has mental capacity to refuse help for herself and as dads carer, for him too. The pharmacy have a log so that isn't a problem. I'm supposed to be taking DSM to the doctor on Monday for memory and blood tests but I'm not so sure what to do now. From what gateway told me, the way she answered the questions and the utter suprise that anyone would think they were struggling have left me feeling like the person they spoke to usnt the same person I've been dealing with for sometime.
Not just defensive but completely able to answer these questions without having to think and no real sound of confusion! I thought DSM would have called me to tell me but I've heard a thing My self and DP sat and talked last night and he's not convinced after this that she is anywhere as bad as she has made out now. Sounds terrible I know but it has made me think. Neither if my step brothers or sister in law have heard anything at all, they're gob smacked as SIL had been on Saturday and DSM had told her about needing help and us going to the doctors. Could she really be making it seem far worse to get us all to go everyday? None of us live close by
As I said, I know it sounds terrible but she had answered all the questions so well i felt like a fraud.

Oh forgot to say they didn't speak to dad. The lady had phoned three times, got an answer on the third. DSM said she had been food shopping, "no not by car, I don't drive as I have cataract" no dad didn't go as he wanted to stop at home and get a few jobs done. "
All very concise and to the point
I'm amazed that this is the same person who the day before didn't know what day it was

I've confessed to this before, but when I took my mother for her memory test I (deliberately) wound her up on the way there. She was very capable of sounding rational when she really was not coping and indeed was not sure who I was. I needed the diagnosis so badly.

She really needed to concentrate to answer the questions, and flustered she could not. Part of the problem apparently is that she is intelligent and thus better able to marshall her remaining capacity.

I understand they have changed the test a bit recently. My mothers score has plumeted as a result to something that more accurately reflects her disability. However even so, and despite me having POA they asked her to resign the form that allow them to send results to me. (In fairness they we pretty firm when she showed signs of refusing, that she really needed to sign.) I don't know what's driving the new caution but for some, including you, it is a nightmare. Trying to control something you can't is stressful and pointless. It is unreasonable for you to be asked to prop a situation you cant influence.

I would ask advice from everyone you can think of on what you are expected to do. They are not SAFE (the key word). The house is dangerous. Your dad is in danger of being neglected. Etc. Awful. That said prior to my mums fall I had to wait three years before I could intervene. She might well have died. To be callous about it, it would not have been my fault. But obviously that was small consolation.

Needsmoresleep you've pretty much hit the nail on the head. Dad is an intelligent man who will only talk in something he is sure of. He completely ignores things he can't follow and when we saw the doctor at the memory clinic he completely ignored some questions and would talk about something he knew. He will say he didn't hear or wasn't raking any notice if challenged until he's pushed and then he walks away
DSM is also a bright woman.
The lady at gateway told me if I can get a diagnosis of dementia from the GP or a referral they will act straight away on my sayso but their hands are tied until then.
TBH it's the reason I'm not calling though I can't make others follow but I want her to stew a bit
If she has managed to fleece them I want to let her have to sort problems herself until she has to ask for help from me. Sorry if that sounds bad but I'm sure you understand what I mean.
I will phone the pharmacy on Thursday afternoon, she will have been in for their tablets so they can tell me if she has taken them all and how they found her when she went. Usually they discrible her as very confused.

My Mum is also intelligent and some of the Health professionals have commented on how she could hold herself together. She has a huge arsenal of deflection techniques she has used. She has always scored well on the Memory tests and at the time of diagnosis got 29/30, it was the other tests she showed her deficit.

I understand the questioning whether she is putting it on. We have been doubt this with my Mother's paranoia as she only shows it to me and my Brother. However her cleaner saw her recently for first time in ages and said she has gone down hill and is paranoid so it isn't just us - unless she thinks cleaner will tell us and it reinforces her case of getting out of current home.

That sounds sensible to stand back a bit. A fair few of us have had to do that to get to the stage where action can be taken. I have a friend going through the similar - her Dad died, professionals noticed Memory issue, referral from Memory clinic, turns on friend . Very very hard situation to be in but hang in there.

This is why it's so good for me to ask here when so many have been through this. I have friend who's mum had Alzheimer's but her dad was fine so he could cope and when he needed help he asked for it. Other s friends have has grandparents with it so it's not the same for them. Thanks to all of you

I really feel for you. Three years ago I was going through the same thing. My mothers husband would not co-operate at all. Despite my pleas SS would not help at first as he was her carer even though he had dementia. The neglect including trying to lift her off the bed to go to the toilet in a saucepan.

Eventually, he was admitted to hospital by which time my mum was in crisis.

Florentina, that's terrible

I agree with above posters, emphasise that there is a lack of safety in their current living arrangements and they are at risk of an accident. People with memory loss do not come ready packaged with a dementia diagnosis, it can take years to get there and it's bizarre them saying they can't help until she's diagnosed. If you can illustrate with examples of dangerous incidents , and you've given plenty above, then surely they need to get involved. Good luck.

I'm going to speak to memiry services and tell them what's happened and I'll call DSM surgery to see what they say. As for SS they were adamant that their hands are tied at the moment. I know they are under pressure and will give the help they can to those who want it. To be fair to SS, I spoke to them Monday late afternoon, I'd been trying during the day but the lines were busy. They called DSM Tuesday lunchtine, it took them three attempts as she was out, so SS were on the ball. The lady did tell me to call back if anything changed and they would do what they could. It's just so bloody frustraiting when she said she wants help then does this!

I know this sounds harsh but many people on this thread have come to the conclusion that in this kind of situation where someone is denying a blatant need for help, you have for your own sake to pull back and let them come to their own realisation. It's scary because this may well involve a mishap, but you need to think of yourself and how much stress you can take. Good luck.

Whataboutbob, I thoght I was being a bad daughter by doing that. I left it a violent of days without contact, not long but I had the chemist phoning me yesterday morning as DSM hasn't collected their meds. The chemist is now only giving them one days tablets at a time so she will need to go six days a week
It's been a crap week really. I've argued with DP which isn't helpful especially as I work for h. I've made mistakes at work, not sleeping and generally feeling shit.
On the upside I spoke to a lovely lady at memory services who had me two electronic pill dispenser sent to me. I need another two and I've to try and convince the pharmacy to fill them as they said they don't do them.if not memory ser will find another for us. Apparently these can be linked to a care phone, they don't have one but I'm taking all this on Monday to go through after the doctors to persuade them what a good idea it is
I spent 20muns talking to a man at gateway yesterday trying to convince him that the need a care assessment, told him all about the medication problems etc. he said about the pill dispenser and asked what time they take meds. 3 times a day said I, oh can you ask DSN what time? If she knew what time to take her pills she wouldn't have taken five mornings worth in 2 days !!!!!! He offered a care navigation call, which I got today. The lady read the notes and before she asked more questions said they need a care assessment. So hoping that should be soon. I've now to keep on to DSM that help is important, dad stool won't admit he has a problem so it's her I hsvevto work on. Sorry for my rambling thanks all

I remember the days of two steps forward, one step back. There is a lot to negotiate, nothing is straighforward, and it is hard to work out where you are headed.

Keep posting, especially if it feels overwhelming. I hope simply writing things down helps clarify what the problems are, and there is a lot of experience here.

Every so often you find someone kind and knowledgable within the system. Make the most of them. The ones who understand how tough it is, wont want to see you fail. I hope the doctors goes well.

Thanks so much Notenoughsleep
You're rught, it does help to write it down
I'm syre to be on the support thread before long. I'm hoping the doctor can find out what the problem is. DSM can be so different,, I've no idea if it's dementia or if she gets so stressed that she literally can't think straight, even over the tiniest thing.
Oh and one of the pill dispensers sat on the kitchen work top just went off, beeping ringing and carrying on with its self. Scared the bejesus out of me and the dogs. Had to take the batteries out!

I am still thinking of you. As sad and as difficult as it, things sometimes do only get moving when some sort of accident or crisis happens. Few people can be hard hearted enough to let that happen. We would never forgive ourselves if we neglected our relatives while waiting for 'the authorities' to step in.

At times ifelt like I was wading through blamange or a one person put it to me "it like herding custard"

I hope this site is helping you not to feel so alone.

I work for Age UK to support carers, very possibly in your area going by what you have said about services

Our service includes advocacy to help liaise with SS and other agencies. We also help with the benefits side of things like Attendance Allowance and Pension Credit where appropriate. Also can help with accessing assistive technology or just supplying info or advice on being a carer/dementia/POA/housing etc.

Feel free to PM if you like

Thank you thank you thank you!!
Msryan I will see things go at the doctors and I've had a big fat envelope of info arrive in the post today, assistive technology, living with dementia, a whole load of stuff for me to wade through. If I get stuck or need advice it's good to know I can pm you, thanks.

Today was DSM appointment with the GP. I explained the problems with tablet taking and showed what the pharmacy had done, the dosset boxes cut into daily strips and each with a sheet on paper with instruction written on. The GP was quite shocked she hadn't been able to follow them. He asked a few questions that she struggled to answer so he's referring her to the memory clinic for more tests and a CT scan. It's only been a year since dads diagnosis and now it looks like we're going down the same riad again. They are both upset but dad has now gone to being awkward and he doesn't want people going in the house etc
I'm waiting to hear from a social worker to arrange a care assessment and for some care phone information , and I'm hoping when these pill dispensers are up and running on Thursday that it will make things a bit easier but I won't hold my breath. I collected today's Tuesday and weds tablets, putting rues and weds away, gave them this mornings and lunchtimes while I was with them but still had a phone call at tea time to ask why there were some tablets and paper on the table. I went thrugh it over the phone for 10 mins before DSM could get that dad had one more lit to take and her two lots. I ended up getting her to rattle the boxes down the phone so I could hear they gone!! I could do with a web came in the house to check on them