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  1. #1
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    Finding a suitable care home

    Hi. I've been lurking on TP for ages and must say it's a fantastic place full of useful insight and information, sound advice, and many lovely, sensible, compassionate people. I'm sorry I've lurked so long but I've felt somewhat overawed by your experience and knowledge! You've also answered most of my questions before I've even realised I needed to ask them, and I'm additionally very conscious that my situation is nowhere near as heartbreaking as most.

    However, I have a problem that I don't recall seeing on the forum.

    A year ago I realised in a blinding flash that my mother was suffering from dementia. I jumped up and down (a lot!) and finally managed to get her referred to the 'memory clinic' where she was diagnosed with short-term memory loss, likely to be Alzheimer's. After various upsets - thinking she'd been burgled and calling out the police, locking herself in her flat, phoning me constantly, panicking she'd been out with and 'lost' long dead family members - basically (as I learned from TP) all the usual sorta stuff - I somehow managed to persuade her to move into a care home.

    Because my mother is very fit and active, and in many ways is still very articulate and bright, she went into an older person's CH rather than a dementia registered home. Unfortunately, because she likes to go out (she's always been a keen walker - probably why she's still so fit and active) she resents it if the CH try to stop her going out in the evenings, and she has also been upsetting the other residents by accusing them of stealing things. She had been in the CH for exactly 12 weeks when she had a particularly bad evening and climbed out of a waist-high window to get out. She's 90. I said she was fit! As a result the CH have said they are no longer willing to keep her there.

    We live in a south coast town with loads of CHs but I am finding it impossible to know how to find somewhere suitable for her. Because she is so active and loves to go out, her greatest pleasure being to walk along the sea front, I'd like to find somewhere where she will be allowed out. But because of her dementia and challenging behavior it needs to be a CH with dementia experience. However, with the CHs who have very early dementia residents, I'm concerned my mother will cause too many upsets, and after they talk to her existing CH they decline to take her anyway. Those CHs for more advanced dementia cases don't seem suitable because my mother can still be very articulate and bright and will simply have no one to interact with, and be completely baffled why she's there. Her SW has no advice, and everyone I talk to agrees she is very difficult to place. Someone suggested finding a CH with very large grounds, but there are none in the town where we live, and I am reluctant to move her away from the sea, from me, and from the one or two friends who still see her.

    I've looked at over a dozen CHs in the last week or so (not so easy when you work full time in another town!) and I feel I've more or less reached the end of the road, and the end of my tether. I'm desperately sad at the thought of having to confine her to a locked home for advanced dementia residents (where I suspect she would have to be sedated into submission) when she is currently still capable of a far more active and interactive existence.

    Reading through this, even I can see there are no answers, but wondered if anyone had ever had a similar experience?
     

  2. #2
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    Hello Fuchsia

    No experience, sorry.
    But welcome to TP
    Hopefully, others will come along to give advice.
    Barb X
     

  3. #3
    Hi and welcome (finally ) to Talking Point.

    Have you called the Alzheimer's Society helpline? The reason I ask it that they hold a very detailed list (far more detailed than anything on the internet) which may give you one or two possibles. I say one of two, because the more parameters you give them, obviously the fewer options there are. I have to confess, though, I think you're going to find it exceptionally difficult if for no other reason that I think any residential placement for people with dementia are going to be unwilling to let her wander will-nilly for fear of liability. Even if you found one with extensive grounds, those grounds probably won't be secure.

    I wish I had better news for you, but please do try the helpline http://www.alzheimers.org.uk/helpline
    Jennifer

    Volunteer moderator and former long distance carer.

    A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.

    Abraham J. Heschel
     

  4. #4
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    Hi Fuchsia

    Good to seek you lurk no more and have joined the forum.

    I would think you best course of action would be to look for a NH that has residential and a seperate unit EMI. (This is what I found for my mum). Usually that type of NH the staff have experience of working with residents that have AD, but it could be that mum would be given a residential place for the time being, with the facility to move onto the EMI when needs must. Usually EMI have sound security to stop residents escaping. Also a NH that has EMI is used to looking after residents with challenging behaviour.

    With regard mum's walking. I would imagine any NH would be unhappy to just let mum trot off on her own for a walk, they are responsible for her, and Im sure you would be jumping up and down if anything should happen to mum if she went walkabout on her own. I am sure it would also be difficult for them to assign a carer to leave the home to take mum for a walk. So, through the AD Society I would see if you can find a volunteer group who would be willing to befriend mum to take her out, maybe Crossroads, the local church, even a local walking group might have a member who would be willing to give mum some time to take her out for regular walks, its worth asking around.

    I would also look for a NH that has a regular activity programme including trips out, I am sure if mum were occupied the need for walking especially now that winter is around the corner, wouldnt be quite so great.

    Take heart its a frustrating and worrying time finding somewhere suitable, but keep at it, Im sure you will find the right place in the end.

    Best wishes
    Cate
     

  5. #5
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    Finding a suiable care home

    When I was a carer (I have AD now) I had a similar problem, an active, highly intelligent former clergyman who didn't take no easily. I contacted one of the local churches who found a 'buddy' who used to take Denis for walks, sit and listen to music with him, look through coffee table travel books. He was a blessing on our lives and better than any care we could have bought in. It's worthn a try.
     

  6. #6
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    Hello Barb. Thank you for your welcome. I always read your thread and so admire how you care for Ron. Always makes me smile when you talk about tickling his feet.

    Hi Jennifer. Thank you, too. Yes, it's good to finally come out of hiding. I'd tried a number of times to contact my local Alzheimer's Society, on previous (crisis) occasions but had never been lucky enough to get through, and did try again a number of times on Friday without success, but encouraged by your words I did finally get through today. They were very kind, but seem to agree my mother is a difficult one, and couldn't suggest anywhere suitable, although they did mention trying to employ someone to take her out regularly. I will look into it.

    They didn't mention a CH list, but I've used http://www.carehome.co.uk/ a lot. You can search using postcodes and it apparently covers all registered care homes in the UK. It has useful summaries including number of residents, registered categories, contact numbers, links to the CH websites, and to the latest Care Quality Commission (CQC) reports for each home. I've found it an incredibly useful resource.

    I've now contacted I think 18 different CHs in the last couple of weeks and seen 13 (my head's spinning) but if they aren't dementia registered they won't consider her because she has a diagnosis of (likely to be) Alzheimer's, and if they are dementia registered they are usually 'locked' homes. I actually took her to one very promising dementia registered CH on Saturday, and it reinforced my feeling that she is difficult to place when the manager took me to one side halfway through the 'tour' and said she didn't know why I was looking at EMI homes! Having met my mother, the manager thought she would probably be happy to let my mother go out, but when I rang this morning the owner had said this wouldn't be possible. All I'm hearing at the moment is the sound of doors slamming. I also understand the new Deprivation of Liberty act could cause problems because my mother is obviously totally capable of safely going out alone, extremely keen to do so, and understandably pretty indignant when prevented!

    Hi Cate. I do understand what you're saying, but my mother is so keen on going out that to restrain her while she is still perfectly capable of doing so seems horribly cruel, since it's the one thing she's always loved doing. I currently have no fears or worries about her going out. She goes to the Library to get books (she's still a keen reader), goes to Church on Sunday (when she remembers it's Sunday!), goes shopping when she needs anything (lipstick, new winter hat, wine?!) and walks quite long distances along the sea front. I don't feel she's (currently) any less capable on roads as I am. I would far, far rather she went out and faced risks, than was confined and restrained. I'm finding it very difficult.

    Hello Shelagh. Thank you for your kind comments, and especially as I realise you've got your own challenges to contend with. Yes, I did find a lovely CH which also had a dementia unit, but unfortunately they weren't prepared to take my mother on the CH side, I felt she wasn't yet ready for the dementia unit (thought I still had options at that point!) and they didn't have any vacancies in the dementia unit, which kinda solved the problem anyway! I liked the idea of you finding a 'buddy' for your clergyman. My mother has always been rather peripatetic with her religion, trying loads of different churches (Baptist, Methodist, C of E, Catholic, used to be a Quaker - I've always thought she was hedging her bets for later!) but that, or something similar, is certainly worth looking into.

    Well, tomorrow is another day and my mother and I are going to see another dementia CH who have kindly suggested we go for lunch, so perhaps this is the light at the end of the tunnel. Or is it just the express train coming the other way? I'm so stressed I suddenly went dizzy at lunchtime and since then have been walking very cautiously on floors that are pitching gently like boats, so I'm off to bed. And I promise I'll stop writing such ridiculously long posts and (now I'm lurking no more) try to contribute to other's.
     

  7. #7
    I was really talking about the National Help line http://www.alzheimers.org.uk/helpline. They are the people who have access to the list, not the local branches. If it's more convenient you could email them. If you tell them the area and your needs they could refer to the list and at least see if there are any possibles. Really they have far more parameters to search on than the list you mention. I'm sorry your local branch didn't refer you further - they should have.
    Jennifer

    Volunteer moderator and former long distance carer.

    A test of a people is how it behaves toward the old. It is easy to love children. Even tyrants and dictators make a point of being fond of children. But the affection and care for the old, the incurable, the helpless are the true gold mines of a culture.

    Abraham J. Heschel
     

  8. #8
    Quote Originally Posted by fuchsia View Post
    I've now contacted I think 18 different CHs in the last couple of weeks and seen 13 (my head's spinning) but if they aren't dementia registered they won't consider her because she has a diagnosis of (likely to be) Alzheimer's, and if they are dementia registered they are usually 'locked' homes.
    Can I just ask where your mum actually got to in the process of diagnosis and treatment? Was she ever tried on any anti-dementia medication such as Aricept?

    I only ask because it seems that as part of the process of trying to find the most suitable home for your mum, it might be worth asking for the input of her mental health team.

    I can relate to some of your problems as my MIL at 85 is still functioning well enough to be in a residential home (albeit one with a dementia wing when the time comes). She is happy to go out on organised visits with the home or with an individual carer, but feels unsafe going out alone.

    The idea of hiring a carer to take her out did occur to me also. It would work for regular outings to things like trips to the library, but not is she just 'felt like going out for a walk' one evening. But perhaps the right home could deal with those unplanned occurrences.

    It is a good sign that your mum is a participant in this process of looking at new homes. The idea of having lunch in a prospective home is a good one - that's what my MIL did prior to entering her CH. My husband and I actually left for the actual lunch so the staff could see how she was on her own.

    Hope it goes well. You're doing all the right things.

    Take care,

    Sandy
    Sandy
    Talking Point Member
     

  9. #9

    Question

    Just popping in to comment that "short-term memory loss, likely to be Alzheimer's" hardly seems to me to be a true diagnosis of dementia! Is this supposition borne out by brain scans or the like?

    I'm not suggesting you should be in denial, but in many respects your mother sounds capable of still being in control of her (assisted) life and treasured independence.
    Of course it would be awful if anything 'happened' to her while she was out walking, but also awful for such a free spirit to be confined while she derives such pleasure from walking out. Without the 'dementia diagnosis' it might be possible for her to be accepted into a CH (perhaps one with EMI facilities for future needs). Or am I being too naive...

    Best wishes
    Lynne
    former Carer

    "Hanging on in quiet desperation is the English way", lyric line from 'Time', by Pink Floyd

     

  10. #10
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    Slight caution...

    I don't quite understand all the issues but a friend of my mother who used to go to day centres run by people like the Dementia Trust, and another charity found that once she was in a care home she was nolonger allowed to use these groups. She was at a stge where she was still quite active and enjoyed a good walk too. Apparently it is something to do with these groups being set up to assist in supporting independence, and once you are in a home that suggests you need and are getting support. Therefore I would strongly recommend you find a home with a lot of activity. Of course the suggestion that someone is paid to take your Mum out or you find a volunteer who is not bound by the rules I mentioned would be fantastic. Good luck.
     

  11. #11
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    Hiya

    My gran's CH is a small care home with a set number of dementia beds (4 or 5 I think) and about 15 'standard' beds.

    This works well for gran - no-one is 'locked in' but there is an awareness of who is around and who has gone out. The gardens are fairly big to allow a good and stimulating walk. I have bumped into other residents in the local village (about 1/2 mile away) and one of the residents goes to the pub every day before lunch.

    Gran's CH will arrange for day-care centres if wanted - but the day-care centre would only allow access if they had spare places, and it is done privately (not via SS)

    Actually, I just remembered, one CH I visited did say that if gran hadn't had a formal diagnosis that they would take gran, and once there they would aim to keep her and not move if there was a subsequent diagnosis (which I found a bit odd at the time)

    When you find the right place, you will know - also, go back a second time - I had initially dismmissed the first (which gran is now in) as being not quite right, but in retrospect I think the feeling of being overwhelmed by it all clouded my initial judgement. I did a lot of leg work in getting the shortlist together before taking anyone else to see what seemed to be the best few.

    good luck

    e
     

  12. #12
    Ella makes a good point about 'dementia' places and a diagnosis.

    My MIL does have a diagnosis of Alzheimer's and is in a residential home. My understanding after talking to the home's manager about this, is they look at the person's abilities and behaviours in order to decide if they can meet their needs.

    So perhaps it doesn't necessarily follow that a diagnosis of dementia means an EMI placement from the onset. It could really depend on the person's individual condition and the home's ability to meet their needs.

    Like I said, my MIL doesn't try and leave unaccompanied, so doesn't need to be in a secure environment. If someone had some of the symptoms of dementia that endangered their safety or the safety of others, then a dementia place would probably be required.

    That said, there is no such thing as a 'standard' dementia place. The standards documents refer to the home being able to meet residents' needs - and then outlines the types of needs to be considered.

    Take care,
    Sandy
    Talking Point Member
     

  13. #13
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    Hi Jennifer, Sandy and Lynne. Thanks for your thoughts. Yes, I will contact the National Helpline. I first realised my mother had problems, in a blinding flash a year ago. I tried several times but failed to get her GP engaged, and it was only when there was a crisis over the Christmas break, her GP was on holiday, and I was put through to another doctor, that she was referred to the 'memory clinic'. Her appointment was in February, she scored 20 in the MMSE (higher than I expected - I think he gave her an easy ride!), had a brain scan that showed nothing untoward, and was diagnosed with 'short term memory loss'. I've never been bothered about or sought a definite diagnosis, as right from the blinding flash it seemed obvious that she had some form of dementia, and everything I've since read about Alzheimer's seems to check out. No one has ever suggested Aricept or anything similar. Perhaps at 90 they feel she's to old to spend limited financial resources on? She was briefly (when she first moved into the CH) put on some sorta anti-anxiety medication, but it didn't seem to have any effect apart from making her extremely unsteady on her feet. The 'diagnosis' was when the doctor at the 'memory clinic' once said during a phone conversation that it was likely to be Alzheimer's, and I understand it is difficult to make a definite diagnosis without a post mortem.

    No, I'm definitely not in denial. If anything quite the opposite. I fully accept my mother has dementia, and I've never once thought why her, because why not her? It happens to loads of people. It's just one of those things that happen when people get older, and of course, when some are not old at all. It's not unlucky in the way being in the wrong place at the wrong time when high winds toppling a chimney on your head would be! I guess feeling like this makes it a lot easier to cope with, and so my only concern is to try and secure her as good a life as I can, for as long as possible.

    Lynne, thank you so much for understanding the free spirit that she is. Not every one does. I'd far rather accept something might happen to her while she was out buying a new powder compact or a bottle of wine. She doesn't have a corkscrew so she tells me she always looks for ones with the 'twirly things'. Screw caps! Although the dementia diagnosis is preventing non-dementia CHs from taking her, I realistically think she does need a dementia home because she can be challenging when prevented from doing what she wants, can get very confused, gets very distressed when she thinks her mother has gone missing, or her long-dead sisters are supposed to be around and haven't bothered to visit her, gets in a complete spin (getting up at six in the morning and driving the staff crazy with panics about how to get in touch with her long-dead sisters to confirm details) if I make arrangements such as an invite to a pub lunch at the weekend, and on several occasions has upset other residents by accusing them of stealing things. She needs to be somewhere where they can cope with confusions and challenging behaviour, and where they can prevent her from upsetting the other residents.

    She has a SW who seems very nice but unable to help. At the meeting three weeks ago now, when the CH home said they couldn't keep my mother, her SW suggested a few other homes, but said it was up to 'the family' to find somewhere. Since then she's emailed once to ask if I'd found anywhere, and I explained how I was getting on, but she didn't reply, and I haven't heard anything since. Anyway, must dash (cautiously - still dizzy!) and get ready for this lunch. Fish and chips apparently. Sounds okay.
     

  14. #14
    Hi fuschia,

    You might want to take a look at this factsheet on the Alzheimer's Society's website - it's about the process of diagnosis:

    http://www.alzheimers.org.uk/factsheet/426

    It sounds as if the final stages in this process have been a bit 'light touch' in your mother's case.

    As she scored 20 in the MMSE and is otherwise in good health, I find the lack of an attempt to at least trial her on some medication for Alzheimer's puzzling:

    http://www.alzheimers.org.uk/factsheet/407

    I would contact her GP or the memory clinic and ask for a re-assessment ASAP.

    Take care,
    Sandy
    Talking Point Member
     

  15. #15
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    Sandy, thank you for your comments about reassessment. When the dust settles perhaps I should be pursuing this, although having had just one email from her SW since my mother was 'expelled' (and no response to my reply) I'm feeling slightly jaundiced about the support available.

    In case anyone was interested in the light at the end of the tunnel, the dementia CH I saw with my mother on Tuesday say they are happy to take her on. We were offered coffee when we arrived. Joined in a lively and happy 'activity' of armchair (throwing and catching) ball with the residents. Had a good lunch (with a glass of wine) and my mother was very impressed. Probably the wine! I was ideally looking for somewhere larger where there might be a wider 'range' of potential kindred spirits, but it seemed very nice and friendly, my mother told them it had a lovely atmosphere, and they very kindly suggested doing a reshuffle to enable my mother to have a ground floor room, because she doesn't 'do' lifts.

    It's eye wateringly expensive compared to where she is at the moment, but they explained that they have an extra person working in the mornings, to ensure there is always someone who can accompany residents if they want to go out.

    But of course its great selling point as far as she and I are concerned is that they already have one chap who goes out on his own, and they are perfectly happy and philosophical about my mother going out by herself. It's also near where I live, very near a large parade of local shops she is (or was!) familiar with, and is also within walking distance of the sea front where she loves to go. I'm cautiously optimistic.
     

 

 

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