Worried about mum

[RobertE]

I've not posted much on this site but have been very touched by the warmth and support. I hope I'm posting this in the right place.

My mum who suffers from vascular dementia has been in a really lovely residential home for the past two and a half years. However, since August her condition has deteriorated very suddenly. Mum has always wandered but her attempts have now increased to the point where the staff are finding it hard to cope. Mum is 91 but physically she has a level of fitness, agility and speed that is, quite frankly, astonishing.

Yesterday the manager rang me to say that the situation had reached crisis point and, with the darker nights, they were worried about the very serious risk factors involved with regard to her personal safety. So an emergency meeting is being called next week with her social worker.

The manager and staff don't want mum to leave as they are all very fond of her and, in the time she has been there they have become very much an extended family for us both. However, they simply don't have the time to devote the one on one attention that mum needs. Their suggestion is that they put forward a plea for more money to employ an extra one (or two) members of staff solely to look after mum. Frankly, with the current budget cuts in the public sector I can't see this being viable.

The manager did contact mum's consultant with a view to a review and possible adjustment of her medication but, for whatever reason, he has declined to do this.

It now looks as though a return to the secure unit is the only option for the foreseeable future and I am so worried about how such a move will effect mum.

 

[Jo1958]

Robert, hello
I'm so sorry to hear your news about your mum, what a worry for you both. I hope that the meeting next week is positive and the consultant can either be there or send one of their team.

Good luck and take care of yourself, best wishes, Jo

 

[CaPattinson]

Dear Robert, I am sorry to hear this, what a worry. Wishing you and your mum well and if a secure unit is the outcome I hope she settles in without too much upset. Thinking of you XX

 

[florence43]

Dear Robert,

So great to hear what a lovely experience both you and your mum have had with her care home, but I'm so sorry to hear about her sudden decline.

Does she receive NHS Continuing Care? Would that be what might pay for her additional care? In theory it should... The most beneficial thing for her safety, well-being and quality of life would be to stay put, and with increasing needs, the review might reveal a real need for the additional funding. I hope all decision-makers can see that this is best for her.

Odd though that the requested review for medication was declined. Why was that? Seems a logical step to me...

Anyway, just wanted to add my support and to say I wish you luck in the meeting and hope for a good news update soon.

Take care,

 

[RobertE]

Reply to Annie

Hi Annie,

No, mum doesn't receive NHS continuing care - my cousin raised that issue at the review meeting when mum was first in the secure unit, and it was swiftly refused. Social services pay half and the rest is taken from mum's pension/pension credit.

I agree with the medication review request. Unfortunately, I didn't have the presence of mind to ask the manager yesterday the reason the consultant had refused. I have been unable to contact her today but have left a message and I will certainly raise the point at the meeting.

 

[Iamthewench]

Dear Robert,

Just want you to know that I hope a solution is found for you all. And what a pleasure to know that the home will do what they can to keep mum there.

May be a silly question, and I am new to all this, but do the Alzheimers Society now have an area within their charity that could help fund that extra pair of hands?

Nat x

 

[piedwarbler]

Hi

Just to say I hope you get the help you need to manage your mum so that she can stay in that home. Surely that is the best option from everyone's point of view. Not least - your mum!

Hope you are trying not to worry and hope it all gets sorted out soon.

x

 

[florence43]

Hello again!

Sounds like you have all areas covered. The home sound wonderful, so that must be a great relief and support for you. Looks like you'll get a bit more info with regards to meds soon, because that all sounds a bit unhelpful. Surely the decision to review or not to review can't be made without actually seeing her? I don't know, so don't take my word for it!

But in terms of CHC (and again, I'm no expert) I thought it could be reviewed as and when changes in the condition take place. Where one day, a patient doesn't qualify, the decline can be rapid and then they do. I was under the impression that an application can be made as the condition progresses. How she presented in the secure unit would be different to now, I take it? So she may well be eligible, which would mean her care would be paid for, based on her current specific needs.

It's not easy to get it, but my mum is on the waiting list for an assessment. Can you ask your SW to make the application? There's nothing to lose, and if she's refused, you can appeal.

However, it can take some time, unless she's fast-tracked, and in the circumstances, the behavioural aspect of the assessment sounds a priority, so I'm not sure what can be done in the meantime. I just wonder whether this point needs to be driven home because the downside to moving her, even temporarily, is something they need to consider.

I'm just babbling and none of this may be of much use, but if it's worth a try, it's worth a try! Perhaps make a strong point of it at the meeting, or with the SW.

Best of luck, Robert. Hope all goes well,
Take care,

 

[SheilaL]

Good luck Robert. I hope you can reach a satisfactory solution as to your mum's care x

 

[RobertE]

I was contacted by the manager this morning. Apparently mum's consultant visited on Monday and is of the firm opinion that mum's medication is "not able to be altered" and if the home continue to struggle to manage mum then alternative settings have to be considered. I do find his stance extremely disappointing as I feel sure there are other medications which might help. However, the manager is not giving up and has got mum's GP on board to take the matter up again with the consultant.

Annie, thank you very much for your suggestion - yes, mum's condition has deteriorated since she was in the secure unit and so it's certainly worth asking the social worker about making an application for NHS continuing care. I will try anything to avoid mum being moved as I am really desperately worried about the effect it will have on her.

 

[florence43]

Good for you Robert!!!

What a great manager you're working with. I always have a nagging doubt that mum's just been "written off", and it's difficult, isn't it, to just accept things sometimes? Maybe the consultant is right, but no harm in 2nd opinions or pursuing it. At least, then, you'll say you tried everything.

Keep it up!

And let us know how you get on. I'm rooting for your mum!

Kind regards,

 

[RobertE]

The meeting is scheduled for some time during week commencing 15th November. The social worker has suggested that either the consultant (if he can be contacted as he is proving more elusive than the Scarlet Pimpernel) or one of his team also attend. The social worker shares the view of both the manager and myself that moving mum would have an extremely detrimental effect.

I am very fortunate to have so much support and I can only hope that it results in a positive outcome for mum.

I will let you know the outcome. Thank you for your kind words and support.

 

[Christin]

Hello Robert. I am so sorry to read your post and about your mother. My question to you is, does the home have registration for dementia or is it just for the elderly?

When FIL went for our first ever respite earlier this year they found him very difficult and said his behaviour was more than they could cope with. We had a difficult year finding another respite place, places we were recommended seemed too secure in our opinion and the other residents so much worse than FIL.

We have eventually had a week's respite while FIL stayed at a really good local home with a dementia area. They were perfectly able to cope with his needs, had pressure mats by his bed etc etc. It was so much more homely than some of the others we visited Please don't assume that you may have no choice but take a good look around and visit as many dementia homes as you can. They do vary considerably.

With best wishes to you. x

 

[Margaret W]

I could see this scenario arising with my mum. Sadly, she died in November 2008 before the problem needed to be addressed but I do appreciate your sitation.

Christin, I'm not aware of any care homes in our area that would have pressure mats and the like. They seem to be a novelty in North Derbyshire, but I can see that they could be very useful in controlling the movement of wanderers.

I suppose the main problem is at night, when the number of care staff is reduced, and if they are coping with 30 or so residents,it is hard for them to manage.

I hope the care home can think of something. It would be a real shame to have to re-home a resident that they are used to, and who is settled there.

It seems a crass idea of mine, but couldn't there be designed a pressure pad that elicited a pleasant voice that said "Mary, it isn't time to get up yet, go back to bed". I somehow imagine my mum would have obeyed that voice.

I'd suggest anything to help your mum stay where she is, crass or not. Some people in their own homes have night-sitters paid for by the authorities, so why not in a care home?

I hope you find a solution, it is a real worry for you.

Love

Margaret

Good luck.

 

[RobertE]

Update

The manager was contacted by the consultant today who was extremely helpful and he has agreed to increase mum's medication to the maximum dosage in the hope that this will help. This should take 2/3 weeks to take effect. The consultant agreed with the manager that it would be a tremendous shame to have to uproot mum and he thinks every avenue should be explored with a view to keeping her where she is. It's hugely encouraging that he is also on our side.

The consultant also suggested that the manager contact the Deprivation of Liberty Board and request that a representative comes out to review the DOLS procedures that have been put in place, speak with the staff to ensure they understand fully what is involved and also meet mum. I must profess that I don't fully understand what is involved with the DOLS procedures so I am going to do some reading on the internet to familiarise myself as I will also attend this meeting.

So, things are looking far more optimistic than they were last week.

 

[florence43]

Great news!

Robert,

That's fantastic! Must have been all of us willing it to go well that did it!

What is DOLS?

 

[RobertE]

Hi Annie,

It stands for Deprivation of Liberty Safeguards. The manager did explain it to me briefly but I'm afraid most of it went over my head so I shall do some research on the net so I can be better informed when the meeting takes place.

Thank you all so much on mum's behalf for all your positive thoughts.

 

[danny]

Hi Robert,this is hugely topical at the moment.
One of the questions probably to be discussed is, is the medication being used as a form of restraint.

I am not giving any personal thoughts on this topic,however,it will probably be on the agenda for the DOLS meeting.

Please keep us informed because I am very interested in the outcome.

Best wishes, Angela.

 

[RobertE]

Update

Unfortunately, last Sunday mum went missing for two hours in the afternoon and the police were called. Fortunately a resident in the local village found her and brought her back but the police have filed a vulnerable adult report with social services who are now looking to place her in a secure unit in a nursing home. The manager is still fighting this - she has put forward the suggestion that social services fund the home to pay for an extra member of staff to look after mum one to one. Mum's GP has also pushed for this.

It is now down to social services but I'm afraid I'm not optimistic about them taking up the funding for another carer option. I've hardly slept since Sunday night for worry. I should get their decision today.

 

[Grannie G]

Hello Robert

With the best will in the world it is unrealistic to expect one extra member of staff to guarantee your mother`s safety.
My mother sounded similar to yours. She could have escaped from Alcatraz. However upsetting, the only way we could be sure she was safe was in a secure setting.
I understand your distress but it would be far worse if your mother wandered and either had or caused an accident.