1. Aisling

    Aisling Registered User

    Dec 5, 2015
    Am in a total muddle. Mind in turmoil. I am so amazed at the many people who care for their loved ones at home. The words familiar surroundings breaks my heart. OH does not really know where home is but perhaps on a deep level, he is aware of it.

    Very few people seem to have loves ones in CH or NH and if they have, are spending long hours in CH or NH with them. What on earth is wrong with me that I don't seem to have the courage/ backbone/ whatever to know I can care continuously when other people are coping with end of life care at home? Am angry with myself as I never backed away from challenges before or didn't finish whatever I set out to do.

    If I decide on NC, then after I die, home etc will be sold to pay remaining loan for NS. I will be depriving my son of inheriting his home.

    Am now wondering if I could get private carer to help me? And continue as long as I can manage it financially?

    Respite have said that it is impossible for me to continue but of course it is up to me.They had to give OH extra supervision this week.

    A man who was so involved with all aspects of life and now just fixated on tiny things. No sustained interest in anything and he looks so lost. I feel so guilty even posting this message. I can't do anything today... Nothing. Sitting under duvet....crying. Trying to make up my mind...will I post this msge or not? I don't want to upset anyone on forum. I can only admire how amazing everyone is.

    Please if possible can someone tell me how I can continue to care for him at home like so many of you do? I completely understand if there are no replies to this post. Honestly. No offence will be taken. I just need to write it down. Yea I could pop it into a notebook. Maybe in some small way, this post will help someone else who may be in the same situation. If OH is in NH, then I know I will want to be with him every day. Then I will still not give myself a chance to feel better and stronger. I admire those of you who have people in Nursing homes and spend long hours every day with them.

    Am so angry as well that there is little health care for vulnerable people, having worked for a lifetime, paid taxes etc and then at the end their home has to be sold for health care.

    What skills do I need to develop? What am I missing? But as I have already said, I understand. Sometimes there are questions but no answer?

    To all of you who have helped me this far on my journey, thank you.

  2. Beate

    Beate Registered User

    May 21, 2014
    Sweetheart, you are not depriving your son of his inheritance because there is no inheritance yet. At the moment it's money belonging to your OH that could and should be used to fund adequate care for him, something that seems necessary as even officials have said this to you. This does not mean that you are weak or worth less than some people who manage at home. THERE IS NOTHING WRONG WITH YOU. This only means you have a very bad load to carry and inadequate help. But even if you employ private carers, this will cost money, maybe even more than a care home would cost. This money surely will come from the same place as care home money would?

    You owe it to yourself to look after yourself. Crying under the duvet is the action of a severely stressed out person. If you suffer carers breakdown, this will not help your OH one bit. You really are not a lesser person for admitting you can't cope. All our cases are different, so please don't compare yourself and feel inadequate as a result. I have the outmost admiration for every carer, whether they live with the caree, live miles away or had to put them in a care home because it was in their best interest. There comes a time when one person just isn't enough anymore, you know.

    So please don't feel guilty.
  3. LadyA

    LadyA Registered User

    Oct 19, 2009
    Aisling, bear with me until I find the paperwork. It isn't necessarily that the house would need to be sold. I'll get back to you ASAP. Chin up (or, depending on how many chocolatey eggs you consume over Easter, CHINS up!).
  4. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    Hi Aisling please as Beate says don't think you are a failure if OH goes into a care home we are all traveling different journeys with this horrible illness my OH is in a care home I cared for him for quite a few years until I just couldn't cope anymore and I wish I had made the decision earlier as the last six months when he was at home were absolute hell which have left me with some terrible memories.
    I don't go to see him every day and no I don't feel guilty anymore he is in a good care home and is well looked after, and as my sons have said they would rather their dad was looked after now than have any inheritance.
    You must do what is your best interest now. Wishing you strength to see you through
    Sorry this is a bit long. Xxx
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    #5 canary, Mar 25, 2016
    Last edited: Mar 25, 2016
    Aisling - you sound at the end of your tether ((((hugs))))) If you are crying under the duvet then you sound very close to carer breakdown to me. Dont compare yourself with others - everybodies situation is different.
    PLEASE DO NOT FEEL GUILTY. Lots of people on here have their LOs in a CH and there was a thread recently where lots of people said how much better their LOs were. Your job is to get the best care for him and if that means some one else does the nursing bit so that you can do the loving bit, then that is fine. I dont usually visit mum every day either.
    Re your home: If you are living there, as a spouse your home will be disregarded and if he has less than £24,000 (or half of joint savings) the LA will pay towards the fees pay the fees, although you may have to pay some top-up fees.
  6. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    Buffalo, NY, USA
    Every situation is different and you must not compare your situation to others. I certainly don't think anyone judges another for what needs to be done. I could never cope with my mother at home for many, many, many reasons, and I know she is safer, better fed and more compliant in a CH than she'd ever be with me. Take heart. I support your decision.
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    Not over here Canary. The value of the home is taken into account. Completely different system here. Likewise, all savings and income of both spouses are taken into account.

    But yes, you are right, and I can also say, it came to the point for us that much as I wanted to keep William at home, his care needs, complicated by his challenging behaviour, eventually became more than I, on my own, could provide. Had I persisted in keeping him at home, tbh, I doubt he would have lived until that Christmas. Instead, he had another 11 months, mostly in pretty good physical health, and certainly he was much happier and more settled, in the nursing home. Took him a few weeks to settle, but then he loved it. The security, the company, the stimulation, the physiotherapy several times a week, the uniformed male staff to help him - he thrived. I don't mind admitting, I harboured some resentment about it for a while. After all I had done! Caring for him at home for so long had left me with health problems - and now, it seemed, he was happier in a nursing home after all? For a while, it felt like he must have been glad to get away from me! But thankfully, my sense prevailed, and I realised it was exactly the right outcome. And I could go and enjoy sitting with him, watching TV, listening to music, walking around the home, etc. without worrying.
    Making sure that your husband gets the best care DOESN'T mean that you have to do it all yourself. As I was bluntly told at one point: " Sacrificing yourself on the alter of Care will not satisfy the Dementia Demons. It will only allow them to destroy both of you. "
  8. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    Hi Aisling

    I do not truthfully have enough experience to give advice, but if respite are saying you won't be able to continue, I would urge you to strongly consider their advice.

    Making the decision to make your OHs stay in a care home a permanent decision must be one of the hardest decision any human being has to make for another, but there is no way this makes you a failure. You did not ask for your OH to get this terrible disease and had you been able to prevent it you'd have moved heaven and earth to ensure he didn't get it, but sadly you had no choice.

    At the end of the day all any of us can do is what we feel and know to be the right thing by a PWD. If your OH is in care you will still be caring for your OH, but others will be caring alongside. You will be there for him all the time making sure he gets everything he ever needs. That's not failing him, not by a very long chalk and not in anybody's book!

    Lavender XXX
  9. bemused1

    bemused1 Registered User

    Mar 4, 2012
    You have to do what is right for you aisling both of you and no one here will ever criticise you for the choices you make. There is no one size fits all we all do what works at the end of the day.
    Give yourself a break you've done so much an whatever you do has to make your life better, we will all be supporting you and cheering you on whatever it is.
  10. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello there, Aisling.

    I cared for my mother in our home, as you know. I had help almost all the time. We used her funds to pay for carers to come in from 10.30 AM til 5.30 PM every day of the week. Our view was that was what her savings were for - to take care of her with.

    If she had been in a care home, this would have cost a whole lot more, and as we didn't know how long she would live, we didn't want to exhaust her resources. Besides, I liked having her here and knowing she was well cared for.

    I don't know about costs over there, but if it's possible, please try to get someone to come in for three days a week. That's how we got started. Use OH's funds to do this. What Beate said is right - it's not your son's money (inheritance), it's your OH's money, and he needs it.

    I might also say *you* need to think about *your* self - you don't want to spend *all* of the funds on OH, because you might need assistance, too, down the line.

    It is so hard to hear you verbally beating yourself up, though. You have shown us on this forum what a kind, caring, considerate, and constant companion you have been for your OH. Honestly, if it had been my OH needing care, I'm not sure I would have been able to take care of him, because he is quite tall, and I'm not, and he tends to get his mind set on things and, well, that's that. My mother, by contrast, was consistently compliant and happy.

    Please consider starting down the road of making a decision about a care home by trying out the idea of having a carer at home helping you. You need some time to yourself to live your life, too.

    Such a hard decision for you. You need some help, dear. Please know you are in our thoughts and hearts here.
  11. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Wow, that is harsh, I did not realise that. Thank you for putting me straight Lady A
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    I don't know Aisling's full circumstances, but most people here could never afford to have Carers in to the home for several days per week. Agency Carers cost (at least around here, and God alone knows what they would cost in the Capital) 24 euro per hour - at least that's what it was 2 1/2 to 3 years ago when I was enquiring. To put that in perspective, my gross weekly income is less than 200 euro. The only way a private individual can afford to hire in care like this is if a large family are all contributing to the cost.

    And I think (because I was there myself, not that long ago) a large part of Aisling's stress is the thoughts of having a charge against her home, while she will be living there. It's a horrible feeling - personally, I felt that if I went that route, the State would be rubbing their hands, waiting for me to die! And not best pleased at the fact that I was so much younger than my husband!

    Anyway, Aisling - let's see if we can lessen your stress!:) Go make a cup of tea, have a biccie, and breathe!! There are alternatives to taking out the loan against your home. But you have to think with your head, and put your feet down firmly.

    Right. First off, your husband will be assessed to see if he actually needs full time residential care. This means someone from the HSE (I think it's a PHN, but not your regular one) will come to visit, and do a brief MMSE with your husband, and will also talk to you about what help you have, what support you have, your husband's condition, etc. etc. This is no time for being stoic! Tell it like it is. The HSE's own website on this subject says:" The assessment will consider whether you can be supported to continue living at home or whether long-term nursing home care is more appropriate" - all well and good, but the support for people to remain at home has been slashed!

    As regards the financial assessment, what they do is they take your combined income and assets. So, for example, if you and your husband had a joint income of 800euro per week. Then they assess half of that - your husband's half - at 400euro. And then he would pay 80% of that. In other words, it's 80% of half your combined income. (However, you have to remember that if you are on Carer's Allowance, that will stop the day your husband goes into a nursing home - so that won't be assessed, although you do have to put it in on the form!). Next, the value of the house. For a couple, it's 7.5% of the value of the house per year - but you only pay that for the first three years that the person is in a Nursing home, so it's capped at 22.5%. Don't panic!! Because for a couple where (like you) one of them is remaining at home, living in the house, this payment of 7.5% is capped at 11.5%, and not 22.5%.

    As regards documents, you will need, as I said in another post, Bank Statements etc. going back 6 months. You will also need a Statement from the Pensions Office, if you or your husband (or both of you) are in receipt of a State Pension, showing the amount received for the previous year - and if you are getting Carer's Allowance, you will need a Statement of Payments received from them too.
    And of course, the house will have to be valued by an Estate Agent. TBH, I can't remember whether I just picked one myself, or whether they send you a list of ones they use. I think I just picked a firm from the nearest town.

    When it comes to doing out the application forms, Aisling, I know it costs, but I really would recommend you see a Solicitor - ring around locally and find out if any of them have dealt with these forms before. I did it myself - but "in a previous life" I worked for 15 years in a Solicitor's office, so filling in forms is something I was used to. I hate it, but I can do it! However, after my husband died, and I was in with my Solicitor and we were chatting about it all, she did mention that she does a lot of Fair Deal form filling for people, because it is a minefield.

    As far as not taking the loan against the value of the house - remember, you don't have to take it! It means your payments to the nursing home will be higher, but I had discussed it with my dau & son in law, and I decided that there was no way I was putting a charge on my home for the sake of just over 70 per week - which is all it would have reduced my payments by! I found I managed quite well - put bluntly, caring for someone with dementia is very expensive! Here on my own, I found my grocery bill was less than 1/3 what it had been, my electricity bill was down, my heating bills were slashed. And I just found ways of economising. Then dau & son in law said that if I couldn't manage, they would rather help me out as a loan against the house themselves, seeing as eventually it would be theirs' anyway, than have a charge registered against it. But I didn't need a loan from them. I managed on the reduced income. It can be done.

    Now - if it came to it, Aisling (and sorry everyone, that this is so long, and boring for the rest of you!) - is there any way your son could help you out, even with a small weekly "loan" against the value of the house? That could be a route to think about Aisling - and talk about with your Solicitor and your son, in the light of Inheritance Tax down the line, too!

    Finally!! And I hope I haven't frightened you to death, Aisling! Here is a link to the HSE's information page online about the Nursing Home Support Scheme, which you can study at your leisure! http://www.hse.ie/eng/services/list/4/olderpeople/nhss/
  13. LadyA

    LadyA Registered User

    Oct 19, 2009
    PS!! I forgot to say! They also disregard so much of your assets - can't remember how much though! - Ah, found it - they disregard the first 72,000 in the case of a couple!
  14. theunknown

    theunknown Registered User

    Apr 17, 2015
    Aisling, you cannot judge yourself in relation to how others deal with things. You're not them and they're not you. The way we respond to events is bound up with a whole load of stuff, such as up-bringing, relationships, social background, etc. Feelings of guilt are normal, but guilt is subjective. You can only act on what seems right for you. Don't measure yourself against others that have no idea what is happening/has happened to you.
  15. angecmc

    angecmc Registered User

    Dec 25, 2012
    I just want to say, I am sure your Son would rather have his Mum around a lot longer than any inheritance, he would not want you run ragged trying to care alone for his Dad when there would be a team of people to care for him at a care home, I remember saying to my own Dad that I had already lost my Mum to this vile disease, I didn't want to lose him too, which would have happened if he had carried on trying to care for Mum at home, even with my help. You will not have failed, you have already done so much for your husband and you will still be caring for him wherever he is living, time to look after you as well take care xx

  16. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello again. It sounds like Lady A has all kinds of information that might help you. I hope things improve for you. You have given so much of yourself to your OH. It's time you also take care of you.
  17. LadyA

    LadyA Registered User

    Oct 19, 2009
    Been there, done that, CJ!
  18. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Dear Aisling, You are such a kind and loving person and are usually the first to comfort others, even though you are having such a hard time yourself.

    Please know that there are many of us who have been in your situation and have had to put their OH into care due to being unable to cope. I too have felt guilty when I read about how people are coping with their OH at home - some to the end - and I am filled with shame that I couldn't manage to hang on, but each person with dementia is different. It simply is not possible for one person to cope with an OH with dementia, who refuses to believe their home is their home, and cannot accept their husband/wife as theirs, and these and other delusions make them aggressive and unpredictable. The stress and the fear and lack of sleep for one person caring for OH's like these make it impossible to continue, and it is unsafe to try and do so.

    I don't visit my husband every day just 3 or 4 times a week. I used to feel guilty when I didn't visit, but his short term memory is so bad, he doesn't know that I haven't visited, and after a visit, he immediately forgets I have been. I was away for 2 weeks last year house-sitting for his son, and was quite worried, but when I returned he greeted me as if I hadn't been away. The carers are wonderful with him - he doesn't like the other residents and wont mix with them, but the carers make sure he has lots of 1:1 with them, and its lovely to see he has retained his cheeky nature with them, by the banter between them

    If the professionals say that you cant cope, you must believe them, for the sake of your own health. From what I read in here, carers coming to your home are often unreliable and with an aggressive form of dementia one carer would not be enough, and there seems to be a large turnover of staff in caring agencies, and some are not up to the job.

    Lady A has given you brilliant advice and information, and the financial stuff doesn't seem as bad as you feared.

    I hate the fact that my husband is in a care home, but it isn't his fault or my fault - its this terrible disease and we have to be strong and remember that in order to keep going and give our OH quality loving time, without the worry and stress of delivering the care, then a care home is the only solution.

    Please be strong and make the right decision for the future and dont feel guilty - you have been brilliant xxx
  19. grove

    grove Registered User

    Aug 24, 2010
    North Yorkshire
    Hello Asling. , Sorry you are feeling like this but guess it is understandable ( no advice am afraid sorry) How ever just wanted too send you lots of supportive hugs , strength & kind thoughts in the days & weeks too come.

    You have been given lots of good advice & support. Please do think about what others have said.

    Thinking of you.

    Lots of Love & Hugs

    Grove. X x
  20. Aisling

    Aisling Registered User

    Dec 5, 2015
    Hi everyone. A million thanks for such brilliant replies and ideas. Thank you Lady A for so much information.

    I will post again later on when I can.

    I have locked up home and bailed out to my sister for the night. In a warm bed now.

    Blessings to everyone and thanks to all.

    Aisling xxxx

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