What to do next.....

[OverFedStanley]

86 year old DM has lived alone for 30 years after being widowed.

Health is ok but gets very tired, no energy, has recently started Anitdepressants for low mood and anxiety. She has got according to medics Mild cognitive impairment .

To outsiders she lives in an immaculate house and keeps up a good appearance of coping. In reality she forgets how to do things eg use the microwave, the ability to put in her hearing aids . I am not sure if she showers regularly although she can do it on her own. She is becoming overwhelmed by "everything she has to do" eg make meals shop etc.

I have been worried about her and since January she has daily carers sometimes 2 hours a day or 1 hour a day. To check she is ok whilst I am at work.

We are getting a lot of panicky phone calls re not being able to do things and these are getting more frequent. What worries me know is that she has forgotten how to phone me and I am concerned there are more instances of here being stressed than she is letting on. During these periods she is unable to do basic tasks - dr does know about these as does a community nurse who visits but has now discharged Mum.

What is the next step. We have looked at care homes and she at times seems too competent to need this care but then on other occasions she needs support at all times of the day and night. She does not want to go to a care home but also realises she needs some more help.

The carers have helped but also bring other issues in that she wants to direct what they do but also finds this hard to manage - if I set tasks etc she does not agree with what I think needs doing!

I need a handbook for this - children and toddlers were a breeze compared to elderly parents

She's scared and panicky and needs to feel she's still in control. I don't know how you deal with this though. Does she have naps, maybe, or could you try to organise it so that she's out of the way when work is done?

@Singlenotsingle thanks for your thoughts. She does nap sometimes in the afternoon but in her chair and would not do so if people were in her home. She has found excuses not to go out for the last month or so. She will go with carers to shops next door but no further.

I work full time and am concerned that I am not always around for the emergencies that crop up (regularly)

Would live in care be an option?

Yes we could fund live in care and I have mentioned this to her but there if of course resistance. She is always worried about the money but I feel that this is the rainy day she has been saving for.

Is it best to try to keep her at home as long as possible or are there any positives being in a care home? I wonder if 1-1 at home may cause more conflict than seeing different carers in a care home.

Get a lifeline pendant - LAs usually issue these for a small monthly fee - and she can get help even if she cannot remember your phone number.
Can't believe the community nurse has discharged her.
We are about to embark on live-in care for my OH who is due out of the hospice on Thursday. He has PD and cannot care for himself at all - he needs washing, dressing, toileting, has a conveen catheter which needs changing and bags emptying, cannot stand or walk.........etc.

I have been struggling to look after him with carers dotting in and out and we have finally decided live-in care is the only option. However, he has been turned down for NHS funding and SSD will only contribute a small amount to carers going in - so, goodbye savings!

Live- in costs from £795 to £1200 a WEEK! It is eye-watering. Wish us luck! And I wish you kuck ith your Mum.x

....or luck even!......

TBH, I think it is time for her to enter care. My parents are still at home (long story, mum has pretty bad dementia, both are very frail), but I always thought mum would hate a care home. When she had to go into one for respite care when dad was in hospital she bloody loved it - a really rigid routine, everything set up so she could bimble round, no pressure to do anything, food and drink on tap. I was so surprised.

Mishappening I wish you loads of luck - yes we were quoted £1,200 so if we do go down that route it will be for a limited time as we would have to sell her house to fund further care. It is emotional and physically exhausting so do look after yourself too.

CMOTDibbler thank you, yours is just the experience I had hoped to hear . I feel in hindsight that we should have moved Mum to sheltered housing but we have now missed the boat on this and I am thinking that if she does go into care a bit too early it would be better that she is settled etc before she gets even more confused and vulnerable. I feel that she will hate it but she may also just be able to relax and let others take over for her. We did visit a few in January and she was pleasantly surprised but did make a huge effort to manage at home but ......

I am on holiday in July so maybe I can use this as the starting point for initially respite care. I will let her decide on live in or care home.

Thank you both for your comments - they are much appreciated

Oh she does have a pendant - this has caused her major trauma as she presses it accidentally and does not speak to the operators. I have been called to her house on several occasions for this usually late at night (of course!).

Her decision now so that she does not press it by mistake is not to wear it......... unless she goes to the shops with her carer and then it is out of range.

Getting old is so hard

What about a community warden scheme if your LA or council offer this? This is similar to a sheltered housing scheme but parent remains in their own home so less stressful so any changes in routine are noticed/captured (ex sheltered housing warden here). I believe Age concern offer this also in some areas and usually it is the same team of people so less unsettling than carers who may change regularly and a rapour is built up.

Are there any near you who have flats that people can go in so have their independence but use the other facilities and have people on hand for emergencies? We found one for my Mum which was a really good compromise. Unfortunately my absent Brother didn’t think so and took her out but she did well there, made friends and was more mobile than she had been for ages.

Actually this is really well timed as just struck me that could be perfect solution for my neighbour who is starting to struggle.

Oh personalsummer I have not heard of this - off to research it now. Thank you

Just another thought - have you asked the team who support your Mum's pendant if they can call daily/regularly - I know that sometimes we used to ask them to call through on the alarm service at a particular time and check that all was ok. This gets the person used to talking via the alarm service and also checks that the service line is working (which you are required to do monthly) and this can avoid unnecessary call outs to key holders and makes the system less alien

Def try a respite stay while you are on holiday 'you deserve to be waited on while I'm relaxing'. And look at homes through her needs - the one mum stayed at was nothing to look at, but mum could access everything and it had things like raised beds in the courtyard garden with gardening tools left out. Other places I've seen have lovely gardens, but mum wouldn't be able to get out into them, or be safe on her own.

personnalsummer I will follow that up re the pendant, again I did not know that was available. It does not look like Warden service is in our area unfortunately.

CMOTDibler good point about what she will be "allowed" to do. Around here there are some very show house type care homes but I will look more at what they actually can do.

I think there's a risk that she may struggle to cope with care and become more depressed. She sounds a bit too fit for a care home, she's likely to become frustrated possibly. I would suggest a two pronged approach. First.y up the carers and see if that helps and at the same time get her to look at homes for respite whilst you are away. Then you can see which option works best.

If she is stressed when alone and calling you, I would try and persuade her to attend a day centre, usually Age Uk run. This will give her a chance to chat and eat her main meal with others. They often have chiropody/hairdressers etc. They will usually collect you and drop you home. If the carers came just to help her be ready and then at teatime to make sure she is set up for the evening, you would only need an hour in the morning and a half hour evening. That quote for live in care is very high. I would use Careseekers. Some live in carers are having to do full care/hoisting/feed all meals etc but your mum really needs a companion to stop her panicking who can maybe prompt her to wash as needed and help with bits and bobs. That will probably be at the cheaper end of care. To me, if someone has the funds for this and is keen to stay at home, it is best option, but as you say, a week in respite is a good way to get a feel for what it is like to be in a residential home.
The other option is extra care housing like the Mccarthy and Stone type set ups where you have your own little flat but communal meals are available and usually a bit of a social calendar going on. The carers are on site so you pay as normal for what package of care you need but they will also respond quickly in an emergency. The success of this will depend on her current cognition and moving her could cause increased confusion.
Not easy to solve. All the best.

NorthernLurker this is my concern that she will be "old" if she loses the stimulation of being at home. The problem is that the carers are never there when she has a crisis and as these are becoming more frequent it is worrying me umm lots to think about.

Vbdfamily we are a bit out in the sticks and there is no Age Uk Cover here at all. The nearest day centre is 20 miles away. She does live in a busy village with U3A and tea parties but has not felt able to visit these in the last few months as she finds it all too exhausting. I'll see if with the help of the carers we could work on this.

I think we have left it too late for the McCarthey and Stone setups she would never be able to "learn" how a new flat works, eg the shower, the heating etc and would find this all overwhelming. However I am considering moving into one soon! Some look great . Thank you for you recommendation for Careseekers I will follow this up.

Have you talked to Social Services? If care is provided at home, it's means tested and she'll have to pay out of savings ... but the house isn't included in that, so she wouldn't have to sell. Once savings had gobe, SS would pick up the tab. On the other hand, if live in care works out as more expensive than care home, they won't fund it.

You're in a difficult situation, similar to my father - elderly parent wanting autonomy and control, beginning to lose it mentally. He's now in a nursing home, as a result of a sudden crash in both physical and mental capacity, but he's now saying "I need to get out of here and back home". Most of the other inmates have dementia, so care is geared around this ... he may not have dementia, but he's "confabulating", and I'm not sure he'd get rewarding conversation even among non-dementia residents. But he doesn't like being treated as if he can't look after himself (even though he can't). On the other hand, they're bending over backwards to meet his quirks, eg he has his own set of medicine record sheets, so they help him fill his up as well as completing their own. I don't think he'd be any happier in any other home. But we couldn't keep him safe at home before, and I don't think that's changed.

You need to make sure you have respite - you can't be on-call 24/7.

@MereDintofPendiculation I have just read your thread and you too seem to be in the thick of it.

Social services have pretty much said to us that as we will be self funding they do not see the point in doing an assessment. On her bad days she needs support on other days she seems to cope (sort of) but I am always first call for every emergency that happens and it is hard to sustain this long term.

It is a very tricky situation and as your situation shows even when relatives are getting care and are safe they may not be happy so still emotionally exhausting.

My short term solution is to eat and self medicate I am sure that will work

Social services have pretty much said to us that as we will be self funding they do not see the point in doing an assessment. Oh, that is not helpful! Even self funding (our financial assessment consisted of me saying "he has over £23000 in savings, he will be self funding - I was damned if I was going to reveal every detail of his financial affairs when I knew what the result was going to be", but even so, although we didn't have a formal assessment (things moved too
fast), we had a lot of piecemeal assessments and a lot of OT involvement. I don't know where you go from here! What did they say when you told them there was point in assessment because you and she did not know what care she needed to provide?

Self medication will help - you'll no longer be able to just leap in the car at every minor problem ;-)

My nan has vascular dementia and went into a Care home for a week as respite for my mum to go on holiday...nan loved it, said it was like being in a posh hotel and could she please stay!
She was having times when she was completely lucid but then the confused times were becoming more frequent. She had written our phone numbers on all the walls in the house because she was so scared of forgetting them, she'd eat very out of date food, forget the oven was on etc. We made the final decision about respite when she phoned and said she couldn't remember how to light the microwave with the matches
She'd had carers going in four times a day but it wasn't enough because she'd refuse to eat/take tablets/go to bed at the times someone else told her too! But that all changed when she went into the home as she treated it like a holiday.
She told us what a relief it was not to have to worry about insurance, bills or if the roof needed repairs, etc.
Mums GP advised against moving nan in with her because it is so very demanding mentally and physically.
The memory clinic was the step that got nan the help she needed as she was referred to social services and they suggested the respite.

Shortyshortlegs I am so pleased that it worked out for your Nan.

This would be the ideal situation that Mum would like the Home and feel happy there. Mum has been to a Memory Clinic but I think things have altered a lot since her last visit.

I am looking into respite care and I may start another thread on questions to ask when looking at homes. Then the challenge of selling it to my Mum.

Thank you for your comments they have been really useful to see how people have handled things.

My great-aunt went into care and LOVED it - a whole new lease of life.

My Dad is nearly 80 and physically unwell but mentally quite sharp still. He had to move 2 years ago, and we took the opportunity to have a chat about the future, so we found it him a flat within a block for over 60s. There is a warden on site who checks that you are OK daily, and he's got alarms in the bedroom and bathroom. He has his own front door, but the building is really secure and he's loving it there thank god. They have a residents lounge and have weekly coffee mornings, music evenings etc and although he grumps about so many people being about, he knows all their names and which flat they live in! A lot of the residents have carers in over the day too. We're in Gloucestershire and his 2 bed flat is around £550 a month and the services fees around £180.

It may be worth looking at some locally. And yes it's tough.... you suddenly become the adult and not the child in the relationship