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Media coverage made me think

Discussion in 'ARCHIVE FORUM: Support discussions' started by connie, Nov 29, 2007.

  1. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Choosing a care home – please tell it like it is.
    The media coverage this week has made me stop and think again about what happens when you choose a care home.

    You are advised to be prepared.

    Imagine the scenario if, when things are relatively calm and stable, you suddenly start talking about ‘homes’ and go looking at same. It would freak them out, and when things are relatively peaceful it is the last thing you want to do. The mindset is all wrong, you cannot ‘see’ that far ahead.

    Anyway, as I have found out, if LA/SS are funding you are not given a lot of choice, and if self-funded you are advised not to choose too dear a care home, as the SS will not pick up ‘high’ costs when your money runs out, and therefore cannot guarantee that the placing can be met.

    Actual Scenario: by the time you are going down this route your loved one has deteriorated, maybe aggressive, maybe non communicative, maybe incontinent.
    You will be emotionally wreaked, physically drained, and hardly capable of making a rational decision.

    So you look to homes. You may find a good one, who then decide that they cannot give your loved one the level of care they need, or that they have no vacant rooms at this time, “Would you like to go on our waiting list? Ugh.”. You may find one that is far too expensive, or is too far away for easy daily visits, which are essential when, for some couples, it can be the first time they have been separated in decades.
    Another that does not tick all the boxes, and so you are torn.

    There is no one to really turn to for help, and I feel so very sorry for anyone going through this stage.

    As you know, in the end I placed Lionel a 45 minute journey away, because the care is excellent. When his money runs out I know SS will not fund to that level. Do I have to pray that I loose my dear man before then?

    No one tells you what it is really like.
     
  2. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Waiting Lists

    We visited at a lot of homes before circumstances changed the leisurely looking to a mad panic to find an EMI Home at any cost.

    18 months after mum went into a Home I look back and have two memories.

    The first is that none of the Homes that put our name on their waiting list have contacted me to say they now have a room available.

    The second memory is that the Home that took mum in told me on the Tuesday that they had thirteen people on their waiting list and there was no chance of a room becoming available (as they were so popular). But by the Friday a room had magically become available. Later I found that it was the most expensive they had, and we were paying top price. (Never thought to ask if they charged different prices for rooms).

    It really was a nice building, but after four weeks we decided it was the wrong setting for mum, and moved her before it became her new “home”.

    The new EMI Home was even more expensive… and unfortunately is situated in a different NHS PCT area from where she lived.

    I will post about the problems of moving from one NHS PCT to another next year when our concerns have been resolved.

    Clive
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Connie,

    Thanks for your post. We are at the stage when we think we should be looking at care homes to be prepared, but can't quite face that yet.

    As you say we may find the 'perfect' home but when the crunch comes they may not have any vacancies, or may not be prepared to take my Dad.

    Do we hope that something happens to him first?

    BTW, finally heard you on Radio 4. Nice to put a voice to the face! I had no idea you were not in the studio with the interviewer. You sounded completely at home, very professional.
     
  4. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #4 CraigC, Nov 29, 2007
    Last edited: Nov 29, 2007
    Hi Connie,

    I agree with you so much. Please don't leave it too late. No harm in looking way before there is a crisis and you are in a state of mind to make better decisions.

    As far as what to do when the money runs out, it's a tough one. It has kept me awake a few nights.

    I think it depends on the local authority and care home. Some will fund at a level, but move your loved one to a shabbier room. Some will have you out on the street if you cannot match the cost. My guess is that is the reason why the homes wanted the agreement to be between me and them rather than mum and dad. That way when the money runs out they come to me with the solicitor's letter. The problem with relying on the SS/LA to find a home is that they are so restricted on cost and will rarely recommend more than a couple of homes (in my experience anyway). In fact, I recall one Social Worker just telling me to contact the Local Authority for a list - a list I could have got off google. So we were left to our own devices at an incredbily stressful time.

    Like you Connie, we moved a couple of times and now dad is in a great home. Mum as well. I couldn't envisage them being in some of the homes that I visited in the early days. And it terrifies me as to what happens when the money runs out. The top ups for mum and dad to stay in good quality care would bankrupt my family in no time at all.

    I don't know the answer yet and have decided to cross that bridge when we come to it. There is enough to worry about!

    Right now I just watch mums and dads funds dwindle on a montly basis, it just makes me sick. They both saved and lived a modest life rather than living it up.

    One thing I'm glad about was the help I had from members of Talking Point when chosing a care home. The advice about looking at a home that suited mum and dad, not that suited me. The advice on finding a home with happy staff, not worrying about the scuffs on the skirting boards or the place needing a lick of paint but the atmosphere. The advice on visiting uninvited or in the evening to see how things work when you are not on a grand tour. Looking in the kitchen. I'm truely grateful for all the great advice.

    It was still painful and stressful finding the right homes, and we still made mistakes. It surprised me how few good homes were available and the vast difference in the quality of care. Sure makes your value a good home when you find one in the end! And I'd like to leave that positive - there ARE good quality care homes as you said in your interview Connie. It is just so unfortunate that the quality varies quite so much in this area of care.

    Kindest Regards
    Craig
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    I think the first thing that surprised me when I went looking for homes was how much sicker people are in nursing homes now. Admittedly my contact with homes was limited, but I hadn't realised just how much the push from LAs to keep people in their own homes as long as possible had impacted on the population of these places. Even at 88 after several strokes and severe arthritis my mother was much more capable than the vast majority of people we saw. There were obviosly individual exceptions, but they were pretty rare.
     
  6. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    I agree Jennifer.

    I think it is definitely the cost of care that is the main factor that makes people hold out as long as possible not just the LAs providing more support at home. I for one was not impressed at the way home care/help was made available. Mum needed a little continuity but would often get someone different visiting her ever week. But that is another story :eek:

    Many homes have told me that people are often coming in much later or often too late. It is and incredibly sad state of affairs.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,678
    Kent
    Thank you Connie.

    I know it was so much easier to look at homes for my mother than it is to begin looking around for Dhiren. My mother was living by herself and at risk, so there was no guilt in trying to keep her safe, and ensure she had someone there, all and every day.

    Dhiren is not at risk, nor is he alone. He`s with me. I`m sure it will be a completely different scenario, looking for a home for him.
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    It seems such a reasonable thing to do - keep someone in their own home, but I'm not convinced that this is such a great idea - it's very isolating at the least. I agree about the continuity (or lack thereof). That's the primary reason I moved my mother into an extra care facility - not any cost savings but that the same people would be coming in day in, day out. I suppose you could say I DID keep her in her own home for quite a long period - it was only when she became immobile that she ended up in the nursing home. My point about the LA position is that I think their attitude has meant a decrease in the number of "residential" homes and a shortage of beds in the nursing homes. And I think the increase in the numbers of extra care facilites that are springing up is a recognition of the fact that you may not be sick enough for a nursing home, but you're sure not safe in a 3 bedroomed house, for example.
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Connie, you're so right.

    Add to that that in our case, and in many others, it starts with an infection in a formerly comparatively fit person. Emergency admission to hospital, and told that you won't be able to care at home, your loved one will be discharged in a few days, and you have to find a NH.

    It's a nightmare scenario, and one that is all too common.

    And it's all driven by money. The hospital (NHS) is very anxious to pass the cost of care to SS (LA), and the family. Continuing care? That's a joke. The NHS can't get rid quickly enough, and no-one is thinking of the welfare of the patient or the family.

    You're right, everyone should be prepared. I never thought it would happen to us!
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    But I'm not sure how you can prepare. Yes you can, I suppose, know which homes are out there, but these homes can change, they may not have beds available, your loved one may have issues that the hoem can't deal with - there are just so many threads to come unravelled. And as everyone has pointed out, most of the time this "move to nursing home" is precipitated by a hospital stay so you've got the NHS on your back as well. What happened to the concept of convalescent care? I guess all those beds have gone.
     
  11. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    I did not realise there was anything to prepare for! This time last year my mother was still in her own bunglaow 70 miles away and although there WERE problems I was partly blissfully unaware and those I was aware of I had no idea how bad they were.
    Mum was just a rather awkward old lady with a bit of short term memory loss as far as I knew.
    Then at Christmas she came to stay and we were all taken aback when we spent a week with her here just how confused she actually was, but we still thought maybe it was the change of enviroment.
    Then in January she had a fall and broke her pelvis and while in hospital became violent and aggressive.she had an EMI assessment and the outcome was she was not able to live alone, she was too bad for rehab and the care package on offer of 4x20min visits x24 hours would be nothing like enough.
    I was told to find her a home or they would put her in any one in West Sussex and that was that.
    I just looked on the web and found the nearest one to me, visited it and it seemed fine and arranged for her to move in, there were several vacant rooms at £800 per week. She paid from the start as she had other savings so she didnt get the 12 week property disregard.
    she hates it there but the reasons she hates it I think will be the same anywhere so it is not worth finding a home which would be different as I dont think any home would make her any happier.
    If I had more advance warning of what was to come I am not sure I really could or would have done anything differently.
    £800 seems to be about the price here, soon to be £856. When her money runs out she has to move but that wont be for some years yet as she is lucky enough to have a fairly good private pension as well as a state one which eeks out the cash a bit with attendance allowance and the £87 nursing care contribution, plus the cash from the sale of her bungalow and the savings she already had.
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sylvia, very valid point you make:
    Dementia is an awful desease for anyone to have to deal with, but the burden is so very much greater when there are only two people involved, who live together. As I pointed out, sometimes this can be the first time they have been separated in decades.

    I am not disparaging anyone out there who has gone through this process on behalf of a third party, just that when you are losing your soulmate you cannot always think straight, yet you are the very one having to make the decisions.

    Natashalou I am so glad that you found somewhere comforable for your mum, albeit at a very high cost.
    Lionel has no property to sell, as he came to live with me in my home. Therefore even with all my careful handling, I do worry about the financial future. Plus we are talking about a young man of just 66. Dementia does not kill, and he should have, god willing, many more years left ahead of him.

    Sorry about the rant. My 'high' from the begining of the week has left me, and I am feeling down.

    Ah well...........tomorrow is another day. God bless all.
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,417
    I think you're absolutely right. Most of us "children" aren't living with our parents, so we don't have that hump to get over with regard to having someone else care for them. Yes, some of us take that person into out own home, but it's not entirely unexpected that a parent would require more help than we can give. While for a spouse or partner - well the expectation is that you will spend the rest of your lives together.

    Don't forget Connie - you may feel down today, but you did a good thing this week - getting information out to people who may have had no idea about all this.

    Love
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Panorama, 8.30 BBC next Monday. Subject, care homes, and the use/abuse of drugs.
     
  15. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Connie, you are so right about 'losing your soulmate': I am so scared of the day when I do have to let go! I just did not feel comfortable during my visits at the care home when my husband had a short stay in respite in the Summer. I need him here, where I can not only care for him and make him comfortable, but where I can make him feel loved and special. And I need him here for my own sake, because this is where he belongs ..........

    As for being prepared: what is the point of searching for a good care home in advance, "just in case"? If there is an emergency, you have to accept whatever is available, and even if you have a little time to prepare for it, you will be hugely disappointed if there are no beds available at the home you may have earmarked as being the most suitable. Generally a no win situation. - I am glad that you have managed to find a good solution.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    What I meant by being prepared is that prior to John's infection, I had been round all the homes within travelling distance, and knew which were possible and which were impossible. At the time, I was only considering respite, but the same criteria apply.

    When disaster struck, all I had to do was ring the possibles to find out the room situation, then go and visit the ones with rooms.

    I was lucky that the one that was top of my list had a room available in the EMI unit. At the time, I would have preferred the main section, but as it turned out, we couldn't have done better.

    I think what Connie was saying, and I agree, is that for most of us, the time will come. It's better to accept that, and do some research before it becomes an emergency.
     
  17. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Hazel

    I was told yesterday by Mum's consultant that continuing care would be the last resort, although at the moment Mum needs one to one care for her own safety, he is still saying that they may be able to turn Mum around and she can go back to residential care.

    From what I can see and the staff are reporting, this will never happen.

    The consultant said that technically I would be making Mum homeless.

    I found out what he really meant was that, he didn't want Mum bed blocking, which could happen if there were no dementia unit beds available, but it is obvious that a residential care home will not tick all the boxes. We have been there tried it!

    So it appears that NHS will try to off load the finance, if they possibly can.

    Frustrated
    Alfjess
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    As far as I can tell, it's a constant battle between NHS and SS to off-load responsibility to each other.

    The crazy thing is, ultimately most of the money comes from the same source, just out of different pockets!

    I got my SW to fight on my behalf, he refused to let John be discharged until things were set up, bed blocking or no. I know you've had problems with your SW, but would they perhaps come in on this one, as it's to save them money?
     
  19. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Hazel

    We don't have a SW.

    When Mum and Dad were settled in residential care, I was told that they would no longer have an assigned SW,any problems get in touch with the duty SW.

    I did phone the acting senior at SS last week and she gave me some advice, but we still don't have an assigned SW and as the consultant is telling me it is early days I don't think I can insist on SS help yet.

    At least I have alerted them of the problem.

    Thanks
    Alfjess
     
  20. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    I agree with so many of the messages. During my 5 years as Secretary with the Local A.S. Branch, attending Carers' mornings, speaking to former Carers' I had a list of Homes NOT to send Peter.
    I know that I should have said yes when the Consultant told me a year prior to Peter going into E.M.I. Unit, I will not give up. My soul-mate,my best friend, kind loving gentle man who for 12 years our life was fantastic. Like everyone else, we want the best for our loved ones. Due to the last 4 years adding more problems to my disability, even with Carers' who where fantastic are not there 24/7. If Peter showed signs that he was not liking a Carer, I got onto the Agency straight away and stopped that person coming anymore. Peter knew they wanted to place him in the Hospital Unit and he, when he was still able to talk told me Care Home. So I took him to look at the one I thought was best. He loved the place immediately, chose his room and hard as it has been, never asked to come home because he knew that when the time came that specialist nursing would be needed, that would be the only time I would let him go. I had two days notice from the S.W. when Peter would be going in. At present with what is missing for us and our loved ones in the system, my Case Worker and I are compiling data. At the moment it is me against the Continuing Care Funding. I am a very quite, placid person BUT someone has to speak up for those who are unable to do so. So I have been asked to do some articles on subjects that we all want answers too. So that is one of the many things my wonderful Case Worker and I were doing for nearlt 5 hours last night. Bless her she had already visited in the morning to check on me. Best wishes. Christine
     

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