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Care & carers

Escalating

(23 Posts)
luckyrose62 Fri 23-Feb-18 11:51:43

Mums dementia is getting worse. The social worker did organise a day care placement for her just one day a week. Now mum is blind and a bit deaf and has continence issues. She had to go on their transport. As we live 70 miles away. She loved it the first 3 times but something upset her last week something to do with transport home. Well I suspect it was mainly in her mind and we cannot get to the bottom of it. Mum is very private and scared of nurses doctors and authority. Me and hubby both have some health issues. So we only go once a week. He sees his mum and dad who are self funding in a home. My mum is on her own in a housing association flat. When I went last week. She took a good while for me to convince her it was me. This morning she told me she was getting married. I asked who to. She told me it was my dad who passed over 30 years ago. She is getting married in June. Aaaaahhhhgggg, I hate this. No one seems to care. She cannot afford a care home, neither can we , we are saving for our own. She always tells people she is alright. I just feel there is a horrible disaster waiting to happen. I don’t need an answer to this post just needed to vent. I know many of you are going through the same, and worse. Thanks for reading.

Nonnie Fri 23-Feb-18 11:58:13

Sorry to read this. No suggestion as it is outside my experience. flowers

MissAdventure Fri 23-Feb-18 12:01:55

Do you think your mum might have an infection or something? It might be worth trying to get a test for a urine infection, as it can cause confusion. I realise it may be difficult.

Squiffy Fri 23-Feb-18 12:05:56

I agree with MissA, it's possible that an infection - particularly a UTI - may be exacerbating her problems. My DF was always more 'difficult' if he developed a sore throat, he became tetchy and agitated, which was completely out of character for him.

MissAdventure Fri 23-Feb-18 12:09:19

Just read again, and your mum doesn't need to pay for a care home. Most people can't afford it, and it makes no difference to their care.

luckyrose62 Fri 23-Feb-18 12:15:59

There are no council care homes in her town and there are waiting lists for out of town ones. She lives in a seaside town where there are a lot of old people. I have some urine test strips .She totally refused me last week I shall try again this week. She will not see a dr or nurse. Thanks for reading.

SueDonim Fri 23-Feb-18 13:31:25

I'm so sorry, it's very hard to witness. sad

Does your mum still go out and about and see friends? If not, and her world has closed down, would a move so she was closest to you be a possibility?

That's what happened with my mil. She could no longer care for herself properly so she moved to a home close to my sister-in-law. That meant SIL could easily visit her daily and take her out etc without having to make long journeys.

SueDonim Fri 23-Feb-18 13:32:03

*closer, not closest.

silverlining48 Fri 23-Feb-18 14:07:59

Luckyrose, there are no council run care homes in this area, which is the same in most places, they were all sold off years ago. If if your mum is assessed by social services as needing 24 hour care the cost will be paid if she has less than a certain amount. Suggest you speak to social services duty officer adult services in her area and they will advise.
My mum had to go on transport to day care, it was awkward as she lived alone and she got upset and confused, it didnt work.
Perhaps your first stop might be the surgery for a urine test as infection does cause confusion. The gp should be able to advise you about local services.
Its hard, but get as much info as you can, any decisions are easier to make when you know how things work.
Good luck and best wishes.

BlueBelle Fri 23-Feb-18 14:18:57

Do get SS involved they were incredibly helpful for my Mum and Dad and got Mum a place in a care home when it became totally necessary and they didn’t have the means to pay for themselves Most care homes take both fee paying and government funded folks GP is your first port of call
Good luck Silverlining

luckyrose62 Fri 23-Feb-18 14:54:15

She is 94 most of her friends have passed or are in care homes. I would love her to come to a care home nearer me but different county. The grandchildren and great grandchildren could occasionally visit and I could go every couple of days, I could do with this happening before she forgets who I am. She will not go to gp. I asked for a hame visit but all I got was a health care assistant, who said mum was not very co operative, she said her BP was good and that’s about all she got. She was very nice , but mum said she told her to bugger off.

SueDonim Fri 23-Feb-18 15:00:04

Luckyrose, you need to be persistent with your mum, as we found out with mil! Older people can be very resistant to change but you just have to keep plug, plug, plugging away at ideas. Then, hopefully one day, they'll agree, thinking it's all their own idea, and you can let them think that. smile

Have you been able to have a meeting with your mum's doctor or other carers to discuss your concerns? They can't discuss your mother with you but they can note your thoughts.

mcem Fri 23-Feb-18 15:01:41

I'm watching family members go through this. If the dementia is worsening you really need to have her properly assessed by SS and gp.
Apart from the day centre, does she have a care package in place?
Is she safe alone overnight?
If she's assessed as needing care then it must be provided and it is not a question of council/ non-council homes. A care home that caters for her needs must be found and funded by the council if she can"t finance her own care.
Speak to gp about UTI test and also ask about more thorough testing for dementia. Gp and sw between them should then advise you on next steps.
Don't try to cope by yourself. You need (and are entitled to) professional input and support.

silverlining48 Fri 23-Feb-18 15:47:17

Luckyrose there is nothing stopping you from your mum coming to a home near you. There isnt a problem and happens all the time. It means that you can always pop in and check she is ok, whether or not she knows you, you will know she is being looked after properly.
Please speak to social services and if possible arrange an appointment for when you can be there too.

luckyrose62 Fri 23-Feb-18 16:26:28

We had an appointment at her flat with her social worker about 5 weeks ago. I was a bit upset at the time as mum was packing I asked where she was going and she said the name of a town we left 50 years ago. Social worker witnessed this. I think I need to be a pain in the what’s it to all concerned. I am writing things that I know about in a diary, I don’t know everything with being 70 miles away. Thankyou, I am getting the confidence to start asking more questions. She had a social worker before Christmas but they only seem to keep the case for 6 weeks then you have to keep nagging for another one . Her first one seemed quite good, So this one is due to disappear. Both my mum and Dad served in the RAF during wartime. These Caring organisations would probably not exist if not for our elders.

nanaK54 Fri 23-Feb-18 16:28:21

Luckyrose I am so sorry to read this, please do follow up with her GP, there is help out there but it isn't always easy to find (I say that having gone through similar with my late mum)
Sending you kind thoughts and wishing you strength to get through this difficult time flowers

trisher Fri 23-Feb-18 16:46:43

luckyrose62 you have my sympathies. Have you asked if there is help for carers in your area? I have just found out about a number of things because of a social worker, including help for carers and free emergency care from the Red Cross Also as your mum and dad were in the RAF she may well be entitled to a holiday at a much reduced cost in one of their hotels.https://www.rafa.org.uk/wingsbreaks/
My mum wasn't RAF but she had a lovely break at one of these with some financial help because my dad was once n the army. She said they offered lots of care (whch she didn't need) incuding help with showering. If she couldn't go alone maybe you could go along as well.

trisher Fri 23-Feb-18 16:47:28

Link won't work!
www.rafa.org.uk/wingsbreaks/

M0nica Fri 23-Feb-18 19:40:41

Another cause of confusion is dehydration. Is your mother drinking sufficient?

Luckygirl Fri 23-Feb-18 19:48:02

Contact SSD and ask for a care needs assessment and a carers assessment. Tell them she is a vulnerable adult.

Do not worry about the cost - it will be met by the LA if she has no savings.

SueDonim Fri 23-Feb-18 20:45:18

Sadly, Luckyrose, being a pain-in-the-whatsit often seems to be what you have to do nowadays to get noticed. He who shouts loudest gets the most attention. sad

OldMeg Fri 23-Feb-18 21:16:45

Make a nuisance of yourself. Don’t take no for an answer. Keep repeating that you are her next of kin.

Then:
Get yourself a substantial notebook. Write down every phone call you make, the date and the time. Make a point of asking who you are speaking to and let them know you are making a written record. At the end make sure you say their name again so they know e.g. ‘thank you Susan. I’ve made a note that you will ring me again tomorrow and update me’ as an example,

Do the same in face to face meetings.

You need a paper trail and a written record of what was said. Then if you are lied to or misinformed you have a record of this. If promises are made and not kept, or appointments cancelled then you have a record of that.

It is a powerful tool. Social Workers are often very busy. Many are wonderful caring people, others are sloppy and inefficient and plain lazy. Make a point of asking who their Line Manager (or whatever the current terminology is) is and write it down.

Keep a record of correspondence in the same note book.

Believe me, it really works if you can do this and yes, your mother is entitled to residential care even if she can’t pay for it.

The final threat, and don’t be afraid to use this, is ‘if anything happens to my mother, after I’ve alerted you her vulnerablilty, I will hold you personally responsible’.

GracesGranMK2 Fri 23-Feb-18 21:21:23

I am sorry you have these worries Luckyrose. My thoughts would be as others have said. Ask for a doctor to call ,ringing you before they go, and explain the changes you have seen. When you talk to them ask them to let you know what they think is the problem.

Ring her Social Care services, tell them the doctor is about to see her (I know but you need to put pressure on) and can they arrange an assessment. Ask to have it at a time you can be there. It really doesn't sound as if enough care is going in. Is she drinking enough or getting dehydrated? If you don't know tell them you are concerned that she may be getting dehydrated. My mother has carers three times a day and dehydration and therefore infections are still an issue. Is she eating well and regularly?. If you don't know explain that you are worried she may not be. Explain about the incontinence. I am sorry but if your mother is anything like mine she will deny any problems and tell them she is capable of doing it all by herself. Do not let them accept that in areas where you are concerned. It isn't easy because you will not want to contradict her but they need to know and you need them to know.