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Dealing With A Carer Parent

Discussion in 'I care for a person with dementia' started by Kay111, Sep 19, 2019.

  1. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    Hi everyone, it's my first time posting here.

    My lovely dad is in the moderate stages of this horrible disease. It's early-onset, and he was diagnosed about 5/6 years ago. Mum is his sole carer - they live abroad and I only get to see them a handful of times a year (though we speak every few days).

    Earlier this year dad had a couple of mini strokes which has left him wheelchair-bound and it means that mum is really struggling to care for him herself. He's started getting a bit aggressive, mainly verbally but a couple of times physically. And mum basically has no life, other than being dad's 24/7 carer. It breaks my heart.

    I've tried everything to convince her she either needs outside help, or for them to move closer to me so I can share the caring duties (I can't move to them because of other commitments, or I would). Mum's being really stubborn and in denial (she thinks that getting help is "giving up hope" - !!). It breaks my heart and I can understand why people end up in denial but I am tearing my hair out trying to convince her that things can't go on as they are. I'm absolutely terrified something will happen to her because of the stress of everything too.

    The maddest thing is, as upsetting as dad's dementia is, the thing that makes it worse is how my mum is dealing with it. She's almost in martyr mode now - they recently were at the doctors and she was telling me with pride that the nurses couldn't quite believe she was dealing with it all by herself. I love my mum but she drives me crazy! :(

    I guess my question is - has anyone had a similar situation? If so, I'd love to hear what it finally was that made that parent accept help, or any advice about what to say to encourage her. It's stressing me out so much! Thank you so much.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,578
    Female
    South coast
    Hi @Kay111 and welcome to DTP. That is a very difficult situation, especially as your parents are abroad.

    I suspect that your mum has got into a situation where she doesnt know how to let go. Moving is a huge undertaking with dementia and I shouldnt think that she has got spare time to even consider it. I would like to move nearer my children, but I know that the only way it would happen is if I left and somebody else completely took over. I cant even find the energy to clear my garage so I can get a new tumble drier!!!

    I dont know what to suggest about getting outside help, because I dont know what is available where they are living. If you could say which country they are in someone on the forum will probably know.

    Quite often it takes a crisis for outside help to be accepted. My mum lived on her own, so its not the same situation as your parents, but she wouldnt accept any outside help at all and it wasnt until she ended up in hospital that things changed.
     
  3. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    Thank you for taking the time to reply @canary :) I'm sorry to hear that your mum had to hit a rough patch before she accepted help.

    Yeah, you're right, it's probably too overwhelming for her to contemplate moving. I've offered to help with that - finding a place here, sorting out whatever they'll need beforehand etc. They're currently in France and I've suggested that they don't pack up there entirely, just close the house up and rent here for a couple of years. Whether it's practical or not, I think that way mum wouldn't feel like she has to give everything up entirely. Their house in France is really impractical now (stairs everywhere!) so they might eventually have to move anyway. It may as well be close to me and my OH - we're so wanting to help. That's how I feel about it anyway, maybe I'm not thinking about it from her point of view.

    Even so, I wish she'd accept help where they are now. It's crazy that she's doing this alone - I think she's thinking he'll be walking again and then it won't be as bad - but the reality is that ship has sailed. Everything's so much more difficult than it needs to be, and that's what's making me really upset for them.

    Urgh. I hate this disease so much. It's so cruel. I've been reading through this forum and it's horrendous that there are so many families dealing with this.
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,429
    Perhaps to my children I am a problem parent too.
    My husband's last hospital admittance meant Carers came in. They are good but still an intrusion.
    I am looking for permanent Carers but it is not an easy task.
    It has to be the right carer too, not the perfect one but one that fits in. One seemed to want to alter the whole place! I do not know about France but they are not easy to come by.
    People say of me I just do not know how you manage, we manage because we have no choice.
    We managed because sometimes it is easier than not. The organisation of do a constructive change can be overwhelming.
    So if I were to consider moving I would need someone arrange it all for me!
    I am an experienced mover but it is daunting.
    So perhaps you need to look at what they could move too, perphaps rent in a retirement village for a few weeks holiday. Help them travel as I am sure you would.

    The trouble I find with dementia is just as one thinks a plan is in place the illness changes.
    You obviously care a lot. I wish you well. It is tough.
     
  5. Bod

    Bod Registered User

    Aug 30, 2013
    1,164
    Find out what's available locally to your parents, in the way of help, and how to access it, so that when the crisis comes, you can advise/help correctly.
    Till mother accepts the situation, then there is little you can do at a distance.
    Do your parents have French nationality? This may effect what help the local authorities can give.

    Bod
     
  6. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    Thank you @AliceA and @Bod for your replies.

    Alice - I'm sorry to hear that you're struggling to find carers. It can't be easy to accept strangers around the house, I know I wouldn't be happy with it. If your children are anything like me, they think you're a saint for putting up with everything you do :) I've always said to my mum, I know you can, but you shouldn't HAVE to. I'm just worried that it's got to a point where it might be dangerous for them both, and one day I'll call and there'll be no answer because mum's had a heart attack from stress and dad has been left stuck in the house unable to care for himself and without anyone to check in on him.

    I should add that they haven't been in France that long, they bought the house AFTER dad's diagnosis (I told you my mum was in denial. I couldn't believe it, all those stairs!). I think mum just wanted to have a few good years of living the dream of retiring somewhere warm and sunny. But because of dad's illness, and mum being quite a difficult character, they haven't really got anyone out there - friends or anything like that. And now she's not living the dream at all, it's just a nightmare where she can't really do anything but care for dad 24/7 in a house that's not fit for purpose. To top it all off it's in a pretty remote area so....well... god, I worry so much! Constantly.

    Bod - no, they don't have French nationality. They barely speak the language :( I will contact the local authorities to see what the deal is, so if they need it I can be ready with some info. Thank you.
     
  7. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Hi Kay,

    I'm not a carer but have lived in France since 2005. I visit this forum because my sister cares for her husband who has early onset Alzheimer's (8 years now since diagnosis). He is 71, she is 64. They live in the UK but I recognise quite a bit of the 'martyr' in my sister. She is also naturally stubborn "I'm a survivor, I can do this, don't try and tell me I can't!" But she has never been in denial. The turning point came for her only within the last 12 months, and, to be honest, only when her reserves of mental, physical and emotional energy hit rock bottom. In my opinion she has waited too long, but at least realisation has finally struck that she will do her husband no favours if she keels over permanently. Now she is finally letting family in to provide support where they can, and has also just involved social services for the first time. Some very hard talking, if you haven't already done so, might help, but only you know your mum.

    I do wonder if other factors may also be consciously or subconsciously contributing to her resistance to outside help.

    May I ask how old she is? And does she speak fluent French? If not, that might knock her confidence about approaching the relevant organisations for help. And if your dad doesn't speak fluent French (or can't since his strokes) that could make him resistant to outside help as well? I'm reasonably fluent but even so, when I have to go to the doctor or see any kind of professional, I usually have to do homework beforehand. Even then I often find I can't say exactly what I would in English. It's tiring and easier to avoid such situations. Even if the medicos/carers et al speak English it's not the same, somehow. This may all depend on how integrated your parents are into their French community and how well your mum understands the medical system.

    I agree that moving back to the UK - especially if your mum would at least think she has to arrange everything - might not be the answer. Having said that, I know several couples who have returned to the UK in their mid-seventies precisely because they "don't want to be ill in a foreign language"! But they have managed to do so before serious problems arose.

    What changed things for a French friend of mine whose wife has Alzheimer's (both in their 70s), was when his doctor insisted that for the sake of his own health he would have to move her into a care home. For some people the advice is more easily taken from someone outside the family or social circle.

    Denial sounds like the hardest thing to overcome in your mum's case. And it may be that all you can do is wait for her to pass through this phase. It's one of the stages of grief, I think, and moving through it probably can't be forced? As Canary says, unfortunately it may take a crisis to force the issue.

    Very tough for you to witness all this from a distance, and I hope something shifts soon, for you and your mum.
     
  8. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    Posts crossed - sorry. Am catching up with the language issue now.
     
  9. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    From your last post (nbr 6), I get the impression that your mum may feel totally isolated and therefore has no choice but to grit her teeth and get on with it. You might google English organisations in their area, to see if there's anyone who might be able to help or advise. I'm in the Roussillon area and we have a free quarterly Anglophone magazine (P-O Life), which contains all sorts of useful information. There's also a Facebook page and forum. If something similar exists in your mum's area, you might be able to post some questions.

    There is Brexit to consider in all this too, unfortunately. You say they haven't been here that long. How long exactly? Do they each have a Carte Vitale? It's like a green credit card, with social security number, which gives access to the French equivalent of the NHS. You present it at each visit to doctor or pharmacy and, depending on what level of cover you are entitled to, you may or may not have to contribute a balance towards costs. Many Brits need top-up medical insurance, but this may not be necessary for your parents, depending on their pension situation (I only understand the system as far as my own circumstances are concerned, and I'm only 60). I imagine that because of your dad's strokes, this may all have been sorted out.

    But thinking ahead to post-Brexit, do they also each have a carte de séjour permanent (permanent resident permit for EU citizen)? We've all been advised to get one of these prior to exiting the EU. Once we have exited, it will immediately become invalid in one sense, because we will not be EU citizens, but apparently it will be possible to directly swap for whatever resident card we will need as third country nationals. Easier than applying as a third country national from the start, they say.
     
  10. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    Hi @Jenni_B - thanks for the lengthy reply, I really appreciate you taking the time :) I'm sorry to hear about your brother in law. Early onset seems particularly cruel, doesn't it? At what stage is he at? And yes, my mum's absolutely like that - she's a survivor, she will struggle through, she doesn't need help etc. Oh but she does, that's the worst of it. I don't think she realises! I just want her to have as good a life as possible too.

    My Dad's a similar age, he's 70. Mum is 68. And yes, sadly not much French!

    I wouldn't normally consider moving someone with dementia, and shaking up their routine etc, but I feel like this is as much for my mum as it is my dad :(
     
  11. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    65
    Female
    France
    My brother-in-law is Stage 6 (of 7) according to last cognitive test he did towards the end of last year. He is still mobile and able to wash/feed himself, but depends on my sister for absolutely everything. She has no life, and now she resents that.
     
  12. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    Actually I called the Admiral Nurse helpline the other day (about day to day care advice) and the nurse said that they've had so many anxious calls from people abroad because of Brexit that they're having to produce a whole booklet about it :( I don't 100% know the formal legal stuff, as they've been getting advice about that from a family acquaintance. Maybe I need to think a lot more about that too.

    I'm so sorry for your sister. I'm glad she's more open to getting help now though. I've often wondered if early onset means that the illness doesn't advance as quickly - and that's been amazing in many ways because we've had so much time with Dad while he's chatting and knows what's what etc. But it does make me worry more for my mum if it's going to be another 10+ years or whatever. I feel like an awful person for even typing that. Urgh.
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,059
    Yorkshire
    Hello @Kay111
    welcome from me too

    myself, I would be researching as many possible scenarios as I could, just to be ready for whatever occurs
    eg
    find out about support in France ... provision and costs
    look into Lasting Powers of Attorney for both parents and both countries, so you have legal authority to step in and make arrangements for them
    consider how their current home might be altered to make it more 'user friendly' ... then source whatever is needed eg have phone numbers of plumbers etc to hand
    check passports etc are all up to date and in order
    look into exactly how to get both back to the UK .... eg transport, tickets, airport support for someone with dementia ... immediate access to funds to pay for everything ... essentials to bring with them eg meds (most other things can be bought here ... what could not?) ... so you can sweep them up without too much panic
    check over your own home just in case they may have to spend some interim time with you
    look at the rental situation near you, so you can make an offer straight away and have all the documentation ready
    consider a respite stay in a local care home for your dad so he isn't caught up in the chaos of setting up home here
    find a French agent who could manage their property at short notice and check its safety, so you don't need to worry ... maybe they could even organise furniture removal to the UK or its sale/disposal and replace here
    find out how to get them into the health system here

    sorry to go on ....
    I know I'd feel more in control if I'd some idea of what I should do if push comes to shove ... remembering, though, to expect the unexpected
     
  14. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    @Shedrech - thank you! Yes, you're right, I should just make sure I'm ready to help in whatever situation.

    I just wish there was some way of not letting it get to crisis point before they accept help. I just really want to save them from that. :(
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,059
    Yorkshire
    I just wonder @Kay111 if you being relatively prepared may give you all a chance to avert the crisis
    for instance, if your mum even hints at something you can help her out by giving her the information you know she needs without letting on that you've already done the research eg 'would you believe it mum, Martin Lewis the money expert was only mentioning exactly that on his show a couple of weeks ago' ... or a friend mentioned their folks had the same experience so you'll ask her, and hey ho you call your mum back in a couple of hours having spoken to the friend ... or praise her for the brilliant idea, you'll look it up on the internet as it's bound to be there ...
    drip feed ... your mum can ignore it, store it away, take action or do something later when she thinks it's her idea
     
  16. Alex54

    Alex54 Registered User

    Oct 15, 2018
    161
    Male
    Newtown, Wales
    #16 Alex54, Sep 19, 2019
    Last edited: Sep 20, 2019
    Hi Kay,

    We lived in France when my wife developed dementia. We were offered two types of care social (washing, cooking etc) and personal care by the red cross nurses. The support from the local GP was very good.

    This an extract from an email for advice from Dordogne dementia society:

    First, it is perhaps better if I give you some insight on how the “system” works in France: in France we consider that there are 2 major consequences regarding the care for people with Alzheimer’s disease (or similar conditions), and, they are handled mainly by 2 different administrations, with different processes :

      • Health side : the disease comes with various care needs linked to the health of the person, that is, medication, health exams (biology analysis, memory evaluations …), specific personal care like toilet, transportation of the person to labs or hospitals … Everything medical is funded by the French Social Security (ARS, CPAM). This comes with various tools, here are some of them :
        • ALD (Affection de Longue Durée) : This is the act of referencing the person as having a chronicle disease (33 of them are referenced in France, Alzheimer being one) and allows to get a 100% of the medical expenses linked to it being paid for (means, usually, you don’t have to pay in advance any expenses). This goes with the GP consultation, medications, exams … I saw in one of the files you sent me that it was suggested for your wife, if it is not in place yet, it would be wise to ask your GP to set it up.
        • SSIAD (Service de Soins Infirmier A Domicile) : this is a medical service where nurses or nurses assistants would help the persons with medical care at home (toilet if medical, transfers from bed to armchair and vice versa, medication preparation and giving …). In your case, the SSIAD is the Red Cross, and one good thing is that there is a nurse who speaks English fluently. The GP has to make a prescription for it and, it is free of charges.
        • MAIA (Méthode d’Action pour l’Intégration des services d’aide et de soin dans le champ de l’Autonomie) : this is a service which supports the people with Alzheimer’s disease at home by coordinating all actions, financial aids, legal aids and professionals required in the care. It is dedicated to what we call “complex situations” (fulfilling a number of national criteria only). I suspect that due to the fact that you can’t speak French and live at home, alone with your wife, you could be supported with the MAIA of your area and it would help you a lot, but, I can’t be sure of it (I’m the manager of such MAIA in Dordogne, but it is up to each MAIA to decide). I made contact with them and expect an answer in the coming days. Only a professional could access the MAIA (it could be your GP for instance, or me, or the Référent Autonomie-see below …). It is also free of charges. If they were to take care of you, you’d have to be in France already
      • Autonomy side : the disease induces variable losses of independence which is often compensated by the family carer (the spouse, but often, the whole family or network of friends of the person who may help at different levels), at least in the beginning, but, as the disease progresses, the losses become heavier, especially for the main family carer, up to the point that his/her own health tend to degrade too (various scientific publications around the world establish this). The dependence compensation is meant to support the person in her own environment (her home) and is funded by the Conseil Départemental (CD) of each department of France (Haute-Vienne in your case). Some of the tools :
        • APA (Allocation Personnalisée d’Autonomie) : this is a financial aid in order to compensate specific expenses regarding independence … professional carers to help with personal care of the person, transfers also (not medical ones), housekeeping, meals preparation or delivery, … but also sanitary protections … I can’t list all of them (they are numerous). To get it, one has to fill a file, then, a nurse comes to visit you at home to discuss with you a Plan of care for your wife (list of services, duration …). It is important to initiate it ASAP as it takes 3 months for the whole process and, in particular for the visit of the nurse, you should be in France with your wife as the nurse has to come visit you home. Some of the administrative work can be started from UK, though, but not much.
          • The result depends on the financial situation of the person : the CD has to evaluate your annual revenues and will ask for justifications of all your revenues (pension, bank accounts …), which they’ll deal with confidentiality and security. They will study both, the needs (the Plan) and the revenues, and will come with an agreement : a number of hours of each type of service. To give you an example of what it involves (roughly) :
            • you may get a number of hours of services per week, for instance let’s say 5 hours/week, according to activities identified in the plan
            • The hourly cost of the companies delivering the services with a CD agreement is (today) 23€/hour, that is, for a 5h/week plan, a cost of around 600€/month.
            • if your monthly revenues are above 4000 €, you’ll get no financial help (for a 5h/w you pay around 600€ by yourself) . Still you get the service by homologated professionals.
            • if your monthly revenues are around 800€ or bellow, you’ll get the full help (100% paid for of the 600€ of the example),
            • in between the cost for the person is progressive : with our example, around 10 € per month if your revenue is about 850 €, around 250€/month if your revenue is around 2000€/month …
          • The professional in charge of this process is the Référent Autonomie, in your case, it is Mme Carole BETOULLE, whom you met already in 2016. She said, that, at the time, your interview with her was taking place only few days after the confirmation of the diagnosis and that you might still have been under the stress of it. She offered, if helpful for you, that your daughter (as she speaks good French) could contact her in order to initiate the APA work. Here are her contact details :
        • SAAD (Service d’Aide A Domicile) : those are mairie’s organisations, or associations or private companies dealing with the service to the persons (in general). To be fundable with the APA, they must have an agreement from the CD and match some criteria of quality and costs. There could be others, I didn’t have the time to search further, but, the one the services of CD are recommending is UNA OUEST 87, 10 Boulevard de la République, 87200 Saint-Junien. Tel : 05 55 02 46 01. Fax : 05 55 02 47 67. Email : unasaintjunien@orange.fr . Site web : unasaintjunien.fr
        • Other services from the CD : this would be the role of the Référent Autonomie to tell you about all of them, but it provides various helps, for instance, you can get a priority card for parking, priority access to services … there is quite a lot… additional social financial aid, adaptation of the home, delivery of meals, teleassistance … A whole presentation of the CD regarding seniors is available on their web site (in French), along with the way to access to them : http://www.haute-vienne.fr/conseil-.../allocation-personnalisee-dautonomie-apa.html
    • (For you) information and/or training regarding how to adapt and deal with a person who has Alzheimer disease : Apart from the above, information is often provided by associations or social services of the CD. They usually are free of charges. In your case :
      • France Alzheimer in Haute-Vienne : is a smaller association than in Dordogne. I established contact with its president and they’ll support you their best, but, perhaps the proximity with Nontron (30 minutes drive) allow you also to benefit from their activities (café mémoire, permanence …). You may recall Chris did propose a meeting with Marie-Joelle Rossignol in December. We contacted her again, Chris and I and are waiting for her reply.
      • France Alzheimer in Dordogne : we initiated the translation to English of some of our documentation, as soon as the translation is completed, Chris could send them to you. There is also a training for the family carers, but, right now, it is taught in French. Maybe with one of us could go with you ?
      • Plateforme Evaasion : provided by the Mutualité Française Limousine, they offer information, support under various forms (groups meetings, visit at home of people, psychological support …). I haven’t had the time to contact with them yet. If you are to come back to France, I can contact them later. More (French) information : http://www.mutualitelimousine.fr/personnes-agees/soutien-aux-aidants
     
  17. Alex54

    Alex54 Registered User

    Oct 15, 2018
    161
    Male
    Newtown, Wales
    I also forgot to say, as the main carer for my wife I can fully understand your mum's determination to carry on. Nothing would make me change my attitude even although in the long term it will most likely make me ill.
    All I can say is offer support, caring is often a very lonely process and just being able to talk to someone often works wonders.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,429

    I can see why you are worried, wisdom does not come automatically with age! The problem is that we do not have the power to change other people. It sounds as if for your and your family's sake you must do your homework, present the facts and step back. The hardest thing ever, I know.
    Any pressure and they may dig their heels in harder. Keep posting. You may find the help and information on here. X
     
  19. Kay111

    Kay111 Registered User

    Sep 19, 2019
    63
    @Shedrech - thank you, yes, that's a really good way of approaching things. I think drip feeding is definitely the way forward.

    @Alex54 oh, thank you so much! I'll have a good read through this weekend!! It's great to know that the support is good - I imagined it would be in France. It's just a matter of my mum accepting it. I definitely understand, and your wife is very lucky to have you care for her in such a dedicated way. I know it comes from a good place with my mum. I don't know at what stage your wife is at at the moment but please accept help where there is help (I'm sure you are) so that you don't become ill. I know it sounds like I'm just like a helicopter daughter who isn't doing the day to day caring but putting their tuppenceworth from afar but I see how it is for them and I genuinely just want them to enjoy dad's last few years in the best way possible. At the moment mum is (totally understandably) resentful and her patience is thin and things get a little shouty and then dad gets upset. I just want them to get help so their hours aren't so completely consumed by the day to day struggles and then they can enjoy their time together a bit more.

    Thank you @AliceA :)
     

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