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Grateful for any thoughts

(19 Posts)
Alonglongway Tue 27-Dec-16 02:28:00

Mum and dad have been living independently till now. She is 86 and has Alzheimer's - no short term memory, sundowning most days, starting to be confused, excellent physical health. He is 80 - diagnosed with vascular dementia earlier this year, some long term physical conditions.

He was in most senses acting as her carer but is now sharply declining. He is currently in hospital after a series of falls and not clear when he'll be out. I've asked for them both to be assessed

I moved near to them this year and I have 2 fab teenagers who are happy to jump in. But I have a fairly demanding full time job. My brother has always been nearby. He fell out with them for a long time. Now back in touch and keen to help

Mum is declining in dad's absence. She's struggling to understand where he is and won't cook for herself. Whereas she kept the two of them on fab diet all these years.

I'm wondering about respite care for her but also pondering what that would do to her - we went away for a few days in the summer and she got a lot more confused. I talked to her today about getting in a carer in prep for dad coming home. not sure if we're best waiting for the council or will that be slow?

Grateful for any thoughts and experience

Needmoresleep Tue 27-Dec-16 07:17:53

Do they have the money to pay for care?

Have you got access via POA?

If the answer to the first two is yes, you have a much wider range of options. If no POA, try to organise one asap before it is too late. If no money, you will need to learn as much as you can about what the Council might do and how to get them to do it.

It's tough, and I get your point about the risk of your mother losing orientation in respite. It sounds as if you need to work out a longer term solution

Brontebiscuits Tue 27-Dec-16 07:42:01

if your mum is in agreement, get carers in now, yes. Do your parents claim Attendance Allowance? if not, get a claim for that in too.

Needmoresleep Tue 27-Dec-16 13:49:19

Bronze, you seem to be assuming the OP is self funding.

Alonglongway Tue 27-Dec-16 14:03:15

They will be self funding

Do we need to wait for the council to assess them?

Needmoresleep Tue 27-Dec-16 15:44:15

No.

If you are self funding you have freedom to buy in whatever care you want. The Council could organise it, but this might work out more expensive (it would have been for my mum), also if you deal with the Agency directly you can try to negotiate a key worker and so on. (When my mother first left hospital we bought in more hours, then reduced it then paid for her favourite carer to take her out twice a week.) Adult Social Services should be able to provide you with a list of reputable agencies.

You should ask SS for:
a) an assessment of their home. This will provide recommendations for physical adaptations that might reduce scope for falls etc. Grants can be available.

b) a general assessment of their care needs. I particularly wanted this, as my mum had not been assessed before she went into hospital following a fall, and though she was clearly confused, was not flagged, so was discharged without any discussion with SS. (With one days notice and on Christmas Eve!) I was determined this should not happen again. In fact it took them several months to come round and three years later, I have still to see their assessment. It is so much easier that she is self funding.

The POA is important. Really important, and you are running out of time in terms of them having capacity to grant one. At the very least get a third party access form from the bank so you can access their bank account. Or have them transfer monies to an emergency account in both your and their names. You do not want to risk monies being tied up, either in probate or Court of Protection, when the money is needed for care.

And do apply for Attendance Allowance.

I don't know your exact circumstances, but would aim for a minimum amount of moves. Your mother will be really reliant on routine. So think of a one off move for both of them to something like very sheltered, but otherwise prop her up at home. Perhaps using 24 hour care if/when needed.

Alonglongway Thu 29-Dec-16 15:48:43

Some progress.

I got a care agency in for mum and they started today. Good start from well regarded agency so I'm pleased about that.

Hospital social workers started calling me yesterday about discharge plan for dad. Lot of pressure to get him out and Im not happy with the arrangements. No contact from OT, no home assessment, no consideration of mum's incapacity. I mentioned that I was meeting with the care agency and they seized on that. 3 week wait for enablement so they want me to pay the agency for his support package in the meantime.

This happened earlier in the year and they closed his case and he never got the enablement so I'm treading carefully this time. I'm fully aware he will need to fund his care and that's fine, but I don't want him to miss out on services that might be genuinely useful for getting him back to more independence

I'm currently saying no to the plan and waiting to see where it goes

Tips and thoughts very welcome

choccyfiend78 Thu 29-Dec-16 16:01:42

Definitely look into power of attorney if not already done so. You can do this yourself without solicitor involvement and just requires their signature and a small fee.

Also attendance allowance is available and from what I remember is not means tested (we had to look into everything a couple of years ago for my grandmother who has dementia).

Definitely agree with the least amount of moves or disruption possible as every change can move them one step further on down the line.

Good luck X

whataboutbob Thu 29-Dec-16 19:04:14

I think the previous posters have outlined all the essentials, just wanted to send my best wishes, it is very tough and you have both parents unwell, I feel for you. As soon as it's practicable try and carve out some time for yourself and some respite from the solution.

Alonglongway Sun 01-Jan-17 02:55:47

Tough week.

Mum got a chest infection. I stayed up all Tuesday night waiting with her for out of hours GP. Amazing GP showed up at 4am, diagnosed bad chest infection, gave antibiotics, sent note to her own GP for follow up visit. She didn't improve enough and between us all we struggled to look after her.

Meanwhile social workers giving me grief about getting dad out of hospital. He's been escalated to the director of social services as a bed blocker and they're under pressure to sort. Not interested in mum's illness.

I came up with a plan for dad to have a couple of weeks respite care as a form of step down. Visited a place, liked it, they have space. Put plan to dad and he was up for it.

But mum got a lot worse today. DD2 and my brother found her feverish and hallucinating. My brother couldn't handle it. DD2 only 16 - she called ambulance, sat with my mum, rode with her in the ambulance, dd1 and I were waiting at hospital, after an up beat visit with my dad.

Long evening ended with mum admitted, likely to be there for several days. She was happy to be there but at the same time all small and frail. We saw her onto a ward, then stopped and had a few tears. Got out of the hospital bang on midnight to see all the fireworks.

thesandwich Sun 01-Jan-17 09:20:17

Along,I am so sorry. What a star your dd is. Please just grab 30 mins for you today. Could the respite place take both parents? Thinking of you

notquitegrownup2 Sun 01-Jan-17 09:35:59

Along, just saw your thread. It's so difficult isn't it?

I am in a similar position to you, but a few years/months/weeks behind, so waiting for things to deteriorate.

However, I used to work with elderly vulnerable people and was appalled at the discharge process from hospital. I did discover, however, a few useful things:

There is someone on the ward who is responsible for signing off their discharge from the ward - a named person, whom you should be in touch with. That person has the responsibility to ensure they have considered their patient's safety, once discharged. If they ask the patient if they can walk, and the patient says yes (including one of our residents who was and had always been wheelchair bound) then they are allowed to believe them, unless you make contact and make it very clear that this is not true, and that the discharge person needs to ensure a proper follow up plan.

I also discovered social workers in the hospital, to whom one could self refer. So I flagged up with them that Mr X was in this situation, the hospital were trying to discharge him without appropriate care etc. etc. They were fantastic once they were on the case. But no-one told us they were there - I met one in the café and discovered they were available.

I also found that the more that you could be in the hospital, making notes, talking to doctors, asking questions, the more you got done. A nurse admitted to me that, being overstretched, they couldn't do everything, but tended to respond to those who make most complaints. So sad. It also meant that I could double and triple check medication - often incorrect - liquid intake - not accurately monitored at all - and food - often left on a table out of reach, so that it couldn't be eaten.

Hope that things are better for you soon. Your dd sounds amazing - it's so good, so important to have family close to help.

Penfold007 Sun 01-Jan-17 10:07:38

Along I'm really sorry your family are going through this, don't let the SWs bully you. I'm twelve months in to dealing with a similar situation. I insisted on a joint assessment under the Care Act 2014 even though I was fairly sure my parents would be self funding. This was done and I know have a written assessment of both their needs and have found the reports very helpful. Dad was admitted to hospital in the summer and I refused a discharge until a home assessment had been done. SWs tried the bed blocking allegation I just turned it round and told them and OTs to do the assessment. Sure enough it got done, adjustments made and dad home. I've had to fight every step of the way and it is exhausting but can be done. I also second the suggestion that you apply for Attendance Allowance for both of them. Good luck.

Alonglongway Tue 03-Jan-17 17:08:15

Mum's picking up a bit but pretty fragile. Don't know how long she'll be in

Dad's allocated social worker back from leave today and gave me a tough time about why I'm not agreeing to discharge plan for dad. He hasn't been to see my dad - is that usual?

I said I want to see his needs assessment and the OT recommendations in writing. Had been promised them on Friday and they never came. The social worker said he would just explain everything to me - I said no, want to see the documents so I can understand and think about things. E.g. I want to understand as far as possible why dad was having falls.

I listed the documents I wanted to see. Instead social worker offered me an urgent family meeting on the ward tomorrow morning where "all my questions will be answered". I'm holding out to see the paperwork

Grateful for any experience of enablement. They tell me it's recommended for him but not available for a couple of weeks so their suggestion is a support package in the meantime. Carers 4 times a day. Telecare is not in place. His falls before all seemed to relate to rushing to the toilet or changing clothes so I'm very wary of him being alone overnight.

wannabestressfree Tue 03-Jan-17 17:19:50

Don't be bullied. It makes me so so angry. They did this with my poor nan, sent her home post stroke aged 92 without proper assessment and I allowed myself to be bullied. A man broke in and sat on the end of her bed that they had insisted needed to be dragged downstairs.... she was terrified and couldn't speak so we didn't know for ages. Nor that her brother in law had died. She couldn't say.
Stick to your guns. I like the idea of joint respite. Is that a possibility? I would want a guarantee (and in writing) of when they can have help/ assessment etc. It's so wrong though. They aren't bed blockers they are people.

thesandwich Tue 03-Jan-17 21:00:08

Sending supportive vibes- kick ass!

Alonglongway Sat 07-Jan-17 00:23:45

Mum and dad both discharged today. I had agreed a plan for dad, taken aback that mum was sent home too. Though given everything going on including infections doing the rounds in hospital, I do understand it

We had agreed on an interim care package for dad and the pendant alarm to go in today. Mum's OT had rung to go through her recommendations and said she was getting the care package integrated for both of them which I was happy about

Alarm installer was off sick so bad start. Then shortly after mum and dad got home, the care agency rang to say they had no referral for mum so couldn't support her.

I phoned duty social work, OT, hospital discharge coordinator. Turned out to be a paperwork problem - hospital saying council had to make the referral, council saying it's an NHS package of care and they can't do it. Nightmare. Very stressful. Dad wandering round saying no care needed, he'll take care of both of them. I wrote a short, blunt email to director of adult social care asking for it to be sorted.

Nice carer turned up to see dad. She was aware of the paperwork problem and happy to chat to them both about what they'll need over the weekend.

Mum worryingly weak and passive. She has advanced dementia and the chest infection was bad so she's very poorly. Didn't know the house at all. Dad much better in himself but tired and quickly confused.

Gave them lunch. Kept the stressful phone calls away from them as far as possible.

Left them expecting an evening carer to do tea and and any personal care they wanted. As I walked home (with my amazing DDs) had a call from a social services manager responding to my early complaint to the director, apologising and sorting the paperwork issue so mum's package of care was formally referred. Good news or so I thought. As it turned out, carer showed up and dad refused to let them in. Agency rang me to ask what to do and I said we'll just have to leave it for tonight. Dad rang me later to say one of "my ladies" had showed up at midnight and wasn't that a ridiculous time to want to make tea.

Dementia.....

wannabestressfree Sat 07-Jan-17 20:18:09

My nan had a key in a special box outside the house only the carers knew the code too. She had a habit of being nasty/ fickle/ rude. They opened the door, said hello and got on with the jobs. Might be an idea?

thesandwich Sun 08-Jan-17 07:45:24

Along this sounds a nightmare! Well done you for getting through it. It sounds so tough.
Really second keysafe.. you can get one yourself or councils will fit them.
Take care

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