1. Q&A: Lasting Power of Attorney (LPA) - Thursday 27 Sept, 3-4pm

    Power of attorney (LPA) is a legal tool that gives another adult - often a carer or family member - the legal authority to make decisions on behalf of someone with dementia, if they become unable to themselves.

    Our next expert Q&A will be hosted by Flora and Helen from our Knowledge Services team. They will be answering your questions on LPA on Thursday 27 September from 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Mum always in distress.

Discussion in 'I care for a person with dementia' started by alang, Mar 1, 2018.

  1. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    That's my mum's scenario exactly. She'll think I've been there all day ten minutes after I've arrived & then swear she hasn't seen me for a week!
     
  2. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    Thank you, I really do hope this can be the case for us too. Can't help worrying though, that the SW will 'do their best' to get her back home! I suspect they know what they'll do already, but it's almost like a game, as if they're trying to catch me out. I'd love to just sit & talk nonsense with mum without having the worry of, as you say, fire fighting all the time.
     
  3. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    Mum went off to her respite care quite happily on Tuesday. Thrilled to bits by all the attention & not a bit perturbed by the rather confused lady who came to her room & immediately went through my coat pockets! They seem very on the ball there & had mum's history & preferences already printed out inside her wardrobe door. Knowing that she's fond of dolls they had placed one on her bed. Spoke to a carer on Wednesday who said mum was fine. She'd been distressed that afternoon, about a family party that she didn't know how to get to, but they'd talked it through with her & distracted her with the 'baby' she'd taken in with her. Honestly, I couldn't be more pleased. It sounds as though she's getting lots of attention, which is what she needs.
    I spoke to mum's social worker yesterday, who said she'll visit mum twice next week - on Tuesday morning & Thursday afternoon, which will form her review of mum's care needs. She explained that if mum is getting distressed regularly, as I have indicated she does when she's at home, and clearly requires reassurance, then it's likely she will advise that permanent residential care would be the best course of action. However, if she seems quite settled, she would recommend ''one last try'' at returning home, possibly with a bit longer on her carer visits, whilst admitting that much more than that would be impractical. Not sure what to make of that really. I didn't disguise the fact that I would like mum to stay on a permanent basis, because she seems to thrive with more company and, not least,that it would lift one hell of a strain from me. I don't relish the thought of mum returning home & having to go through the whole palava all over again, a few months down the line. Anyway, we'll see what happens next week.
     
  4. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    244
    Hi @alang
    So pleased that respite care seem proactive and 'on the ball' and are taking good care of your Mum. Fingers X'd that they make a decision to firm up the arrangement and Mum can settle there.
    I know your brain will be churning with all the 'what if's' but try and make the most of this little pocket of time to yourself, with Mum safe and sound.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    6,956
    Female
    South coast
    One of the problems is that SWs have a "tick box" exercise and a care home is not supposed to be recommended until everything else has been shown to have been tried and not worked. Usually they will have to have shown that carers 3 or 4 times a day does not work. If she hadnt previously had this number of carer visits then you may have to go through this hoop.
     
  6. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    439
    Hi
    It's seems crazy that they'd send her home if she settles in well. Perhaps you should emphasise that you 'won't be able to visit her as much as before', that you're planning a holiday yourself as you're 'nearing carer breakdown', that they have the 'duty of care', not you. Anything to make it clear that things won't continue as before if she goes home - they'll have to deal with all of it.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    314
    Female
    I think the reason the SW is finessing it this way is for the reasons Canary says - they have to show they have made all efforts to allow her to stay in her own home (and of course if the LA is funding care it is much cheaper for them to leave her at home). Hopefully the SW is just verbally getting those boxes ticked and will decide that it is best she stays where she is. If she does return home, I think you have to withdraw most of your efforts so that SW can quickly see that your mother cannot cope with just carer visits.

    The care home sounds ideal - I do hope she can stay there this time round.
     
  8. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    Yes, I can see that we are going through the SW's list of tick boxes. We are actually up to four carer visits on four days of the week & three visits on the days when I am there at tea time. The SW did actually say that increasing the length of time the carer visits last wouldn't really do much to address mum's main issue, which is being alone & often in panic/confusion about the scenarios going on in her head. That & the complete lack of short term recollection form the majority of her problems. She doesn't suffer, fortunately, with mobility issues etc. As I've said, I think she'd be happier at the care home. I battled with myself for a while about this, wondering if I was trying to justify it to make my own life easier, because looking at care home life you think what a strange environment it is to be in, but seeing mum there - and on her previous respite stay - she seems to have a different perception, to me, of the surroundings.
    Anyway, we'll see what happens after the SW's review visits next week.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    66,679
    Kent
    Hello @alang

    However many hours your mum has your company and the company of carers she will still have the majority of the day alone. If she has lost concept of time , to her it will seem as if she is alone all the time.

    My mother went into residential care at a much earlier stage in her dementia than my husband. He had 24/7 company whether he realised it or not. My mother went to day care Monday to Friday, we visited morning and evening before and after work and attended at the weekends but she was still alone all night and for several hours throughout the day.

    Residential care will make your life easier but if you find the best care home you can, it may improve the quality of your mothers life and also the quality of the time you spend with your mother when you visit.
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    314
    Female
    Yes I've had that same experience, to me it seems a strange environment but to my mother it doesn't. And actually when you have visited the CH multiple times yourself, it starts to seem less strange. My MIL (who doesn't have dementia) recently asked me about the residents in my mother's care home, and I could honestly tell her that all the residents seem content, any blips of anxiety are effectively dealt with by the carers, and there is always a pleasant atmosphere. By this stage the main anxiety is caused by being alone, and a care home helps to remove that fear.
     
  11. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    Went to visit mum yesterday afternoon. She was sitting in the lounge & introduced me to another visitor as her brother. She didn't seem agitated, but did want to know when I was taking her home to her parents' house. Later she told me she didn't like where she was, because she never volunteered to do this job - looking after old people - & they were only paying her 30p an hour. Lately, at home she's been describing there as 'where she works'. The other residents at the care home vary, of course. Some very quiet, some quite noisy. I don't think mum is enjoying the disruption of that.

    I did speak to one of the senior carers about that & because I noticed that mum's new toothbrush was still sealed in its packet - since Tuesday when she arrived! She said she'd make sure the carers were aware that mum does need prompting with brushing her teeth (even though that's already in her notes) and said they'd try her downstairs during the day, as it tends to be quieter. Also perhaps she'd like to eat in the main dining area there - so I get the feeling she's been eating in her room. Have to say I'm a bit disappointed by these aspects & concerned that she's being left to her own devices too much. Maybe, as the carer said, it can take a little time to get used to what residents require & like. I hope it's just that, because otherwise the place seems good - clean & tidy, as are the residents. So I'm a bit deflated at the moment, particularly because when mum went to respite earlier this year, at a different home, she seemed to be happier. Although of course time has moved on since then.
     
  12. Sirena

    Sirena Registered User

    Feb 27, 2018
    314
    Female
    I think the explanation that they are getting used to her likes and requirements is reasonable. It could be that your mother needs more encouragement to go downstairs, but obviously they don't want to force it on her. Some people prefer to stay in quieter areas, and they want to respect that. Your mother will probably get used to noisy residents, the residents in my mothers care home seem to block it out. I was there once when one resident was kicking off and I seemed to be the only person who noticed.

    I never had that problem with my mother, as soon as she is awake she goes straight downstairs to find company. However I wouldn't have said she was 'happy' in the first couple of weeks, it took her a while to get used to what is a very different environment. (I find the toothpaste gets used slower than I'd expect, the carers help her with washing and general hygiene but I suspect she resists toothbrushing.)
     
  13. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    I'll give the care home a call later, to see how mum is doing with a bit more prompting. She won't naturally go into a lounge, say, because she 'doesn't know anyone there'. She does need a lot of encouragement to do anything. Throughout her life she's always taken a step back because she felt that 'come & join us' didn't mean her. I'm sure the carers will get used to that. When I was there on Saturday the senior carer I spoke to said she'd been very settled since her arrival & that often family visits could upset things a bit. I hope that won't be the case each time I visit. Then again when I visit her at home I always get a tirade of tearful questions about where everyone has gone & that she's not staying there on her own all night. At least on Saturday there was someone to take her off for a cup of tea as I left.
     
  14. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    I spoke to mum's social worker yesterday, as she had visited mum at the care home on Monday.
    Apparently mum has been doing cake decorating & art, and is eating in the main dining room. She said that whilst mum had explained to her that she's only been there for one day & she's waiting for her mum & dad to collect her, she did seem quite settled & the presence of carers when she is anxious is obviously a positive factor. She will be seeing mum again on Thursday, when I will also be there. She told me she is quite happy to recommend that mum continues to stay at the care home BUT the ultimate decision lies with her managers & they may wish mum to have 'one last try' at remaining in her flat, with an appropriate package of care. Their meeting will take place on Friday. So at the moment I'm not sure what's going to happen. I'm so pleased that mum seems to be taking part in things & if she is getting used to things there it would be such a shame to plunge her back into the isolation of her flat, which she won't understand. And of course, for my own part, I could have some peace of mind & a return to my very much missed pattern of life, before my own mental health starts to suffer.
     
  15. Sirena

    Sirena Registered User

    Feb 27, 2018
    314
    Female
    I do hope the SW's recommendation is accepted. I think it would be very cruel for her to return home, people with dementia tend to find change bewildering and unsettling, and to shuttle back and forth between home/care home would not be helpful. She is enjoying the care home and clearly less anxious there, it wouldn't be to her benefit to move her.
     
  16. Norfolk Cherry

    Norfolk Cherry Registered User

    Feb 17, 2018
    210
    Female
    Hello alang, I'm following your story as it so closely mirrors mine. I do hope they don't "have one more try" for both your sakes. I remember the issue of effectively being locked in, I'd argue with them it's safeguarding issue and if she does come to harm you will have to hold them responsible. My mum has started propping her front door open, day and night and sitting in her hall in full view as " I am trapped in this prison and I need to see there's a way out" She lives on a busy road in an area with a wide range of people, including some who are struggling with addiction problems, so I feel she is at risk. One social worker suggested she might stop doing that when the weather gets colder ??!! Surely the point is that she is in such a state of acute anxiety, she needs to be with other people and staff to reassure her? She has me for 1-2 hours a day, many phone calls and four carer visits, I just can't see how this is acceptable? I think the framework set up might work for someone with nursing care needs, but not dementia? I keep being asked to "explain to your mum that.....the carers are there to help..or..to let in an assessment officer..." Why can't they understand that a conversation and agreement made in the morning will be forgotten about by lunchtime? Mum had phoned me four times by 10 am today. On we go, but frankly I'm finding it more and more difficult to keep my head above water. Fingers crossed for you and your mum, one day we will all get this sorted!
     
  17. Sirena

    Sirena Registered User

    Feb 27, 2018
    314
    Female
    I agree it really is not acceptable, but they may let it continue until a crisis happens. Was it a social worker who told you to 'explain to your mother...' etc? I can understand a bystander saying something like this but I hope a social worker is more clued up. I suspect I am going to be disappointed there though.

    I think you are absolutely right that the framework is set up for someone without dementia who just needs help washing, dressing etc, and can cope in the interim. Someone with dementia cannot cope with being alone so 4 brief care visits are little use. My mother had two assessments by social workers and the second one openly admitted the care packages they offer are just crisis management.
     
  18. alang

    alang Registered User

    Jul 31, 2017
    35
    Male
    Leicestershire
    I know that had I not effectively locked mum in at her flat she would have very quickly ended up in A&E, having tripped over on the front steps or something. She was always a 'tripper' long before she had the unsteadiness of Alzheimer's, so I agree here, they are waiting for a crisis, Norfolk Cherry. My mum's care falls under the County Council where we are. Before she moved she came under the City Council & I have to say that were she still there now I don't think we would be anywhere near as far, care wise. Before she moved 12 months ago she only qualified for one 30 minute call a day, at lunchtime. I visited every other day, a thirty mile round trip, & we paid privately for a carer on the other days, primarily to provide a meal at tea time & prompt medication. The social worker at that time said we didn't need further visits & suggested that perhaps a neighbour could go in & make sure mum had taken her meds! So clearly things vary from council to council. I consider we have been well looked after here, in comparison. So yes, fingers crossed for all of us that things get sorted before we end up as patients ourselves.x
     

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