Caring over long distances.

Discussion in 'I care for a person with dementia' started by Froggy, Jan 15, 2016.

  1. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    Hi, my first time posting on here, and really just trying to sort out what we should do at the moment. My Gran was diagnosed with Alzheimers a number of years back, and before anything progressed she sensibly put in place a POA with my dad (her son) and myself named on it for both financial and health matters.

    We live in North Wales and my Gran in Oxfordshire so there is a fair distance and popping down to check if things are okay is obviously difficult (my dad tires with long car journeys and I have a car-hating toddler which makes it more difficult too). We bring her up to stay for a week in the Summer and had her here for a week at Christmas too, plus visits when possible between. So a lot of our understanding of how she is we have to based on twice weekly phone calls.

    When here over Christmas it was clear that she had deteriorated a lot since her Summer visit. The repetition was constant and it was obvious she could no longer cope with the basics. When we took her home a quick look in the fridge showed food out of date from months before (this was after she said she had cleaned out the fridge and only kept the good stuff). I'm pretty sure food wise she now lives on things that can be cooked in the micro - porridge, ready meals etc - and sandwiches.

    We sat down and discussed with her having a carer come in each day and she point blank refused, saying she would decide when and she wouldn't let them in. Over the next week I phoned her pretty much most nights until she agreed to a lady she has known for a few years coming in twice a week for a start (so not an official carer, but better than no one).

    Today she couldn't get out of the bath and thankfully it was a day the lady comes in, but she was stuck there for three hours. Then she couldn't remember how to phone any of us (numbers all saved in the phone) or find her address book.

    Obviously as well as the memory issues she is struggling physically and we are worried about what to do next. Her GP is calling me on Monday and I am thinking we will need to start the ball rolling for a carer to come in daily - but what if she still refuses? How do we progress this? Before the Alzheimers she was stubborn, but her refusal to listen is making it very hard to make sure she has proper care. Although she does have friends near it isn't fair for us to keep relying on them to keep us updated.

    Moving her in with us (or my parents) isn't an option, plus she would be unwilling to move from her locality. We want her to be able to maintain her independence for as long as possible as we know how much she wants to avoid any form of care home - although we do know somewhere not too far down the line this will have to be considered.

    So if we arrange a carer can she then refuse access? How can we deal with this? I feel we are flapping around at the moment just not sure what to do next!
     
  2. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,852
    England
    Hi Froggy, welcome to TP. Do you think your Gran could afford a live-in carer? We did this for my mum and it has worked well for 7 years. It is more expensive than a CH, although Oxfordshire might be an expensive area for residential care.

    We use a national agency. They find suitable self-employed carers, and organise a continuous schedule of bookings. The carer needs their own bedroom and should not be expected to share the client's bathroom, although that is not a dealbreaker, especially if you are engaging a carer on a trial basis. Carers usually come for between 1-2 weeks. Some of my regulars like to come for longer than that. I won't go into any more detail at this stage because you may have already decided that live-in care wouldn't suit.
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,937
    Female
    Chester
    Things went pop for my mum and we wouldn't let her back to her house for various reasons. She had jumped from a visit in August were I thought something was wrong to at christmas repeating herself, forgetting things etc.

    We moved her near to me. I found something called sheltered extra care, sometimes known as assisted living, and she is very happy there. With the stability of not having to try and cope with as much, she has improved. The carers are wonderful. She has a call button - but would never use it! so carers going in twice a day, restaurant for lunch on site, but in her own flat keep her out of a care home for now, and for much longer than if we had tried to keep her in her own home.

    I live in Chester and mum was just outside London, so 3 hours each way, she was no longer capable of keeping medical appts, or much else and even in a care home I would have struggled to provide the support needed. She did have a strong circle of friends and does miss them, but regularly tells me she is happy where she is. It may be worth researching extra care/assisted living to see what there is near you. Mum didn't fully understand what was happening but did understand she wasn't in care and that she has her own front door.
     
  4. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    511
    #4 arielsmelody, Jan 15, 2016
    Last edited: Jan 15, 2016
    Would your Gran be self-funding? My MIL is LA funded, and the social worker has been very helpful in getting carers organised.

    My MIL has four carer visits a day, in theory to give medication, help with personal care and prepare food for her, but although she does let them come into the house, if she tells them that she doesn't want personal care or food, they tell us they can't force her, so it is a long way from perfect. If she answered the door and told them not to come in, I think they would just leave.

    I think it would be worth arranging daily visits anyway, even if they aren't successful at first - at least you would know that the help was available to her if only she accepts it. And I would definitely arrange a key safe outside the door, so that if there was an emergency you would know that it would be possible for someone to access the house. And a telecare alarm pendant for her to wear and fire alarms linked to a call center, in case she has a fall or a fire.
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Extra care housing is often a brilliant option and can be accessed through the council based on need not on current house ownership or bought into privately (I would tend to go for the former)and so is a live in carer (but that depends on if there is money available as the council won't fund). Have a look at this website
    https://www.linc-cymru.co.uk/extra-care-schemes

    While you are trying to sort all this out would you be able to book her into a day centre/lunch club this would tide her over whilst you looked at housing schemes
     
  6. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,937
    Female
    Chester
  7. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    Im afraid that mum absolutely refused everything. She wouldnt have carers in and she definitely wouldnt have allowed a live-in carer! She refused day care, fell out with all her neighbours and accused a long-standing friend of hers of stealing from her!!
    She insisted that she didnt need any help and was doing everything herself, when in reality she was doing nothing - not cooking, cleaning, washing, changing her clothes, no-thing :mad: Because she told social services that she didnt need any help she was crossed off their books and was left with no help at all. She started wandering around during the night, in the cold, wearing only night clothes. By now I was tearing my hair out. Eventually the crisis arrived - she had a TIA and went into a care home from the hospital.

    It is a shame that the stage when extra help would be a big advantage is the time when they often resolutely refuse help. If mum had accepted help at the beginning she would probably have been able to remain at home for longer. Having said that - she is content in her care home and I know that she is safe, fed and looked after.
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I guess everyone is different but i have seen a number of people settle to extra care when they have refused carers in their original settings
     
  9. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    Thank you for all the replies. I don't think she would accept a live in carer at all sadly, plus funding would be difficult. Although she owns her own home her income is negligible and little savings so we are having to look into carers allowance. I'm hoping after speaking with her GP on Monday we'll have a fuller picture of her health.

    If it does come to a care home we are trying to decide where would be best. Near to where she lives now would be easiest for her to accept I think, but there would be few visitors (I imagine as it becomes more progressed friends will drift away too). N Wales by us would have the problem of mainly Welsh speaking which would I imagine be a very hard situation for her. We've the third option of Staffordshire near to her two sisters, we would also be able to visit more often as a lot less driving - this is most likely.

    The thing is if she weren't so stubborn and would let a carer in it would be a while before even getting to the care home stage. We just can't let it carry on without daily checking though. Thankfully her friends at the moment get her out of the house a few times a week for lunches and she also gets taken to a scheme arranged via her consultant (they do exercise or similar?) once a week.

    I'm going to start the ball rolling for an alarm for her tomorrow. The problem we had is Social Services became involved when she was unwell a few months back, but she sent them packing. I'm wondering if with the POA we can push their input and assessment?
     
  10. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Talking to people over the years in many ways it doesn't matter where the care home - the brutal truth is that once someone is there what matters is the care, the physical environment ie rooms etc but what over rides everything is the visitors - if she can be somewhere where there are the most visitors and the most people who care about her then that is the place to be because outside those walls it doesn't matter whether it is the Outer Hebrides or Lands End. What matters is the people who love her and want to visit and be with her
     
  11. Grable

    Grable Registered User

    May 19, 2015
    165
    Sounds like we're in a similar position, Froggy - my mum's a minimum of a 4-hour drive away.

    At the moment, we're in the process of getting a care package in place. At first she disagreed vehemently with this, but then we asked for an assessment from the council. (Free to everybody who asks.) A very nice lady came along and spoke in a matter-of-fact way to Mum, who, basically, took that as an authority-figure telling her what to do, so that was OK. We also pointed out that if she accepted the care package, she was much more likely to be able to stay in her own home than if she didn't. That swung it!

    Have you seen the 'Own Phone'? The Doro 319i Amplified Photo Button Telephone (available in the shop on this site) looks good for a landline. I'm also getting an Ownfone (http://www.ownfone.com/dementia) for Mum when she goes out. At least that way, provided it's charged, we can locate her if she's gone walkabout - which she does occasionally.

    We've been advised, too, to give a picture of her to the local police, so they know where she belongs should she get lost.

    For funding, make sure you get the Carer's Allowance and make sure she's getting the discount on her Council Tax.

    Good luck - and if you find anything out or have any breakthroughs, please post them. I need all the help I can get for this one!
     
  12. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    My father was in another country to me and refused carers when I suggested them. (This was before diagnosis but I could tell he was in need of help.) It took a crisis and a stay in hospital before he accepted them. Even then I had to use the 'You'll end up back in hospital without them' blackmail and a bit of strong talking to, telling him the doctors insisted. If you can get the GP onside, and say he/she insists on carers, it would be a worth a try. Caring long-distance is a whole different stress - the feeling of helplessness and frustration is continual but do try not to let it get to you.
     
  13. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    Unfortunately she has had another incident involving the electrics yesterday. Thankfully her neighbours were on hand to help her (trying to screw bulb in to a bayonet and shorting the power then sitting in with no power as not sure what was going on). Her neighbour was a district nurse and when speaking with my dad said assessment is needed asap as she just isn't coping, thankfully she also said to my Gran she needs a regular carer which seems to have helped convince her somewhat.

    It seems her friends and her two sisters are all in agreement with us about carers/SS assessment then possible care home when time comes, but it became apparent earlier that her other two children are not. Now whether this is denial or other motives (they seemed more concerned in the property's equity than her well being!) who knows, but it is looking as though we are going to have a bit of a family battle as well to make sure she is safe :mad:
     
  14. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Froggy, I'm sorry to hear the latest update and am glad your Gran wasn't hurt, and thank goodness for the neighbours.

    I wish I had better advice for you but agree, something needs to happen to make sure your grandmother is safe.

    Others here will know more than I, but I believe one of the phrases to get things to happen is "vulnerable adult at risk." Can you enlist the help of the GP as well?

    I don't have advice for dealing with the stubborn family members, other than to tell them to go and spend a week living in with her, so they can see for themselves what the situation is like.

    If and when a care home becomes a possibility, consider the location of it as well as the quality of care. Ideally it will be as close as possible, to as many as possible of the family members/friends who will be visiting her and helping with her care.

    It's also much easier on you (the family, plural and inclusive, not just you personally!) if you can take the time to visit care home ahead of needing to find one in a hurry due to a crisis. I realise this may not be on your list of fun things to do, but just consider it.

    I know the long distance thing is stressful and awful; I did that for a few years with my mother (but only about 2 hours' drive). Now my mother is in a care home 15 minutes from me, and it's much easier. She wasn't happy about leaving her hometown, and frankly I wasn't, either, but this is what had to happen. I'm an only child and the social worker at the hospital, and the nurses there, and the doctor, and the staff at the care homes I looked at in her hometown, all urged me strongly to move her closer to me. So I'm just saying, it could be possible and it could work out.
     
  15. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    The house phone looks great Grable- and the pictures would solve a lot of her issues with remembering numbers and how to use saved numbers. Think we shall pick one up. Thank you!
     
  16. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    I think the GP will be on board Amy. We've had a few issues with finding our copy of the POA so having to get another sent out, so they will discuss with me in more detail. The fact her actual GP was willing to speak to me straight off is unusual and I suspect means they have concerns too.

    I've got the forms to apply for Attendance Allowance which should alleviate her worrying about paying for a carer to some extent. Just need to sort someone suitable that she likes and I think she may agree to it - is just daily reminding her at the moment. I'm planning on going down in the next couple of weeks so trying to arrange with local SSD an assessment for whilst we are down there too as she is very good at covering up how bad things are getting.
     
  17. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    While you are there if you can arrange it do see if you can get to the local carers cafe - you will get a lot of info about local carers, care agencies, care homes just by word of mouth - it is amazing what people will tell you when you reach out. If you google the local carers organisation and then give them a ring and ask them when the carers cafe is I would think that you will get loads of info. Also if you can get to the local AS Memory cafe it is another one which will be well worth a visit to gain some local knowledge quickly and painlessly
     
  18. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I am relieved to hear that about the GP; it can make a world of difference.

    Fizzie makes an excellent suggestion about asking for "local" advice.

    We hope you are able to sort something out. If you're inclined and have the time, please let us know how you get on.
     
  19. Froggy

    Froggy Registered User

    Jan 15, 2016
    8
    #19 Froggy, Mar 7, 2016
    Last edited: Mar 7, 2016
    Things have got a little more difficult this past month to say the least! After the incident in January requiring paramedics come out, she also has had an overnight hospital stay end of Feb. Her general health is a little in decline (awaiting double cataract op so eyesight playing a part).

    The bigger problem is the family being at odds with one another on what to do. Whilst myself and my father (her eldest son) have been trying to put in place attendance allowance and social services assessment as well as finding local groups for company, her younger son has told her she is fine and dandy, doesn't have alzheimers, and should move to a sheltered housing scheme locally.

    Of course, not wanting to believe she has alzheimers she listened to him instead of us on best way forward, put her house on the market and put an offer in on the sheltered housing flat. One major problem being they don't accept people with dementia and she did all of this without telling us! There is no way she could have organised this, so was clearly whilst son2 was visiting that it was put in place.

    Thankfully we have contacted the place she put the offer in on and explained she has alzheimers so she can't progress the sale, but now need to get her property off market (which incidentally he put on for £15k less than market value for a quick sale!). It is all getting very messy. We have the POA, but she won't listen to our advice as she doesn't like what we have to say :confused:

    I can understand not wanting to accept she is unwell, but she was formally diagnosed four years ago and has been on meds throughout that time, so he (son2) is being ridiculous with it. Told her she doesn't need carers and we are overreacting and not doing what is best for her :mad: The fact she can no longer sign a cheque, announces her PIN out loud to remember it when shopping, and can't remember to take her meds or appointments seems to have passed him by.

    It does have a silver lining though, she has said how she is feeling lonely and wants company and is struggling to cook. Which is why he so easily sold her on this complex as they have a communal dining area for lunches. I'm hoping it means now we can convince her fully on carers, groups, and SS assessment or an appropriate alternative housing that accepts those with dementia.

    We are speaking with the GP again tomorrow as she is due to see him on Friday, in hope he can talk some sense into her about future care (he is very helpful). In the mean time we are just trying to sort out this mess son2 caused and get her back on track for carers coming in as the only person to suffer in all of this is my Gran :(
     
  20. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Oh, my goodness, what a mess. I am so sorry to hear about all of this and as you say, there is no way she could have organised all this, so I have nothing nice to say about Son2. (It is stories like these, that make me thankful I'm an only child and so is my mother--no relatives to deal with at all!)

    I hope you are able to sort it but what a lot of unnecessary work and anxiety for you all. I wonder about contacting the estate agents to say that you have PoA and she does not have capacity and they must deal with you, not her or Son2?

    Of course she doesn't/can't understand she has Alzheimer's (sometimes it's denial but sometimes it's part of the disease; Google "anosognosia" when you have time) but there is no excuse for Son2 having his head stuck so deeply in the sand.

    How awful for you!
     

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