1. Mimi63

    Mimi63 New member

    Nov 1, 2019
    5
    Hello. My father has been placed in a care home by his wife (not my mother) despite both my sister & I offering support to allow him to stay in his home. His wife has also ensured that she has lpoa for dad's finances, though hasn't bothered with health & welfare. Dad currently has 'fluctuating capacity ' & is very aware that he is not at home- wanting to go home every evening & becoming extremely depressed. The biggest issue is that the care home state that his wife is next of kin & they refuse to contact or discuss anything with my sister or me, saying that they will only contact one person. Dad's wife refuses to communicate with us & also does not allow dad access to money ( a direct request for spending money for a weekend with us, our children & grandchildren resulted in £20 being left in an envelope!). The care home seem to have kowtowed to his wife's wishes, rather than dad's best interests, & we are not being involved in any meetings or discussions about care, medication changed or general wellbeing. Does anybody know whether there is a way to challenge this situation to ensure that it is dad's best interests that are being met, and that we are included in discussions relating to our father's health, wellbeing & happiness? We're extremely concerned that decisions are being made which are not in his best interests. Any support or information would be welcomed. Thanks.
     
  2. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,260
    Does your Dad have a social worker?
     
  3. Mimi63

    Mimi63 New member

    Nov 1, 2019
    5
    I wish! His first social worker literally vanished from the face of the earth & now ss state that they will only become involved if Dad needs to move to another care home (unlikely) or is hospitalized. I have been directed to the dist team, but they seem woolly over their involvement. It's all very upsetting, especially when Dad is adamant that he has not stated many of the things that are written on his notes; all statements represent his wife's opinions & wishes. Prior to Dad being 'dumped ' by his wife, as she refused to allow him home after a hospital admission, there were no issues with communication but now neither my sister or myself have had any contact with/communication from his wife in months. My sister lives abroad & is particularly worried that she will not be able to get here in time should Dad go downhill. The money situation is very worrying, as all birthday gifts (cheques usually) stopped as soon as Dad's wife had poa & I am giving Dad money to give to his great grandaughter when she visits, as he has always given her a couple of pounds or a fiver when he sees her & gets distressed when he realises that he has no money. Neither my sister or me care whether we have money from Dad, but equally we don't feel that he should be relying on us for trips out, spending, cigars, sweets & gifts to grandchild/great grandchild. He worked until he was 70 & lived a relatively affluent life. It's all really horrid & any advice is welcomed.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,023
    N Ireland
    Hello @Mimi63 and welcome to the forum.

    That’s a very unfortunate situation and I hope you get some good advice from members in the morning. Maybe you would feel that there may be some benefit in talking to the experts on the helpline - I do understand that they are very good. If you would like to try, the details are

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm
     
  5. Lawson58

    Lawson58 Registered User

    This is a very difficult situation because you have no way of knowing what is going on. You don't seem to have any sort of a relationship with your dad's wife and when there is a degree of hostility happening, then it tends to colour every thing, big and small. You have come to conclusions about particular things without really knowing the details and the truth of the matter.

    I would have to say that as your dad's wife, she really is next of kin and the care home is following correct protocol and have no choice but to act as they are.

    It is not uncommon for a person with dementia to express a desire to go home but that applies equally to people in care as well as those who are still at home. Home may not be what you assume it to be. It may be a place he remembers from earlier times or it may be wanting to be in a place that feels familiar and safe. If he is doing this mostly in the evenings, then it sounds as if he could be experiencing sundowning.

    It doesn't disturb me about giving you only pocket money for a weekend away as personally I would have thought that you would have been prepared to pay for it.

    What does disturb me is that it is very evident that the strain between you and your dad's wife is not in the best interests of your father. My husband has children and without knowing me or anything of our relationship, I was always cast as the wicked step mother who had all sorts of ulterior motives in regard to their dad. I can only suggest that somehow you try and mend some bridges with the lady because continuing in this way is not going to achieve anything.

    It is so hard caring for someone with dementia and you can't possibly know what stress this lady was under. Certainly, it would have been more difficult if you and your family were pressuring her. Have you thought that she felt if you were constantly judging her and that this has contributed to the bad feelings between you?

    You probably don't want to hear this but you have made this an issue between you and your dad's wife and he seems to be getting a bit lost in the middle.
     
  6. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,501
    Some very good points from Lawson58. If a social worker was involved when your Dad went into the home then they would have been involved in any 'best interests' decision. Social services only place people in care homes as a last resort and when 24hr care is needed, so try to move away from the thought that his wife has 'dumped' him there. It's often difficult for those who are not involved in the day to day care of someone with dementia to appreciate just how difficult it is, or the impact it has on the health of the carer, so as Lawson has suggested try building some bridges with your Dad's wife and offer her some support as you all want what's best for your Dad.

    Care homes are very expensive and when myself and my sisters got POA for Mum we reduced birthday money to her grandchildren and stopped giving ourselves birthday money from Mum. Everybody appreciates that paying for Mum's care is the priority so maybe you can explain the situation to his great grand daughter so that she doesn't expect money each time she visits? It's unwise to leave money with those in a care home as it can go missing, and you giving money to your Dad to give to his grand daughter is clearly distressing him. Those with dementia can often become fixated on money so if you can try avoiding any reference to money when you next visit you may find that this helps to reduce your Dad's distress.
     
  7. sausagedog

    sausagedog Registered User

    Aug 22, 2019
    62
    You seem somewhat fixated on money - that comes through loud & clear. Of course your dads wife would be next of kin & it’s certainly in order for her to have power of attorney. I think unless you’ve been living with a person with dementia and having to cope alone with it, you can’t really judge your dads wife especially if you and your sister have done little in terms of care previously. Your father will have been assessed already & not just ‘dumped’ in the Care Home. It can be extremely difficult & exhausting to look after a PWD at home - read some of the other posts on this forum - your dad is safe & looked after - that’s what’s important
     
  8. canary

    canary Registered User

    Feb 25, 2014
    11,117
    Female
    South coast
    You have had some veru good points made and I will just add a couple.

    When someone moves into a care home it is not free. The house will have been disregarded because his wife is still living in it, so unless there are significant savings he will be having Local Authority contributions. They will only contribute a certain amount, though and will expect pensions, Attendance Allowance etc to be paid towards the care home fees, leaving him a personal allowance of about £30 a week. I suspect that this is the £30 that you received as "pocket money". In addition to this, his wife may be paying "top-up fees" to the care home if the amount that the LA is paying doesnt totally cover the care home fees. Money may be quite tight now. It is also common for care homes to not allow dementia residents to have money as it usually gets lost and causes a lot of distress. Accusations of stealing are so common with dementia that it is almost diagnostic, so care homes try and nip this in the bud.

    Do remember that your dad has dementia. It is very common for people with dementia to say or do something and then totally deny that they have ever said/done it. They usually have very skewed perceptions of what is happening and often have no insight as to their own problems.

    It is incredibly hard to look after someone with dementia 24/7 - even a quick readthrough of these boards will give you an idea of what carers are faced with. Very few people take the decision that a care home is necessary, lightly and Social Services usually only agree to it as a last resort. You said you offered help. Im wondering what sort of help you were thinking of and whether you actually did anything. Family have often said to me that they would do anything to help, but when I have asked for them to sit with him for a day (not even on a regular basis) so that I can do something that he is no longer able to do, or just to give me a break, there have just been excuses trotted out and I feel very much on my own.

    To me it is significant that everything broke down once he moved into a care home. Very few people with dementia willingly move into a care home, but usually there is very little choice because their carer may be unable to keep them safe, or may have become ill and unable to cope. The number of carers who predecease the person with dementia is quite frightening. Nevertheless, a move into a care home is often the very best thing for a person with dementia. My mum did not understand the reason why she was there (and later did not understand that she was, in fact, in a care home) and regularly demanded that she was taken out of there, but she thrived there, making friends and joining in the activities - it was definitely the best decision I made for her.
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,260
    im sorry I don’t have any advice for you my lovely. I think that the helpline will be a good starting base, my personal experience of the helpline is only positive.

    I could not read & run, sending ((((((((hugs)))))))))))& my best wishes
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,986
    Female
    I don't know whether your dad is self-funding the CH, but I was thinking the same as @Louise7 about spending money. I have POA for my mother, who is in a care home, and I definitely wouldn't hand out regular gifts. I am the only one who knows the details of the finances, so I can see the cost of a care home, and the money draining out of the account. As attorney I have to act in my mother's best interests - and her best interests are for her money to fund her care as long as possible. If another relative wanted to take her out for the day I would only offer about £20, if they wanted to spend more I'd expect them to pay for it themselves. She is at the stage in her life when her care is the priority.

    I know you are upset about what has happened to your dad - all of us with a relative with dementia find it very distressing. But I think you might want to re-frame the situation. When I decided a care home was the best thing for my mother I certainly didn't think I was 'dumping' her, I saw it as ensuring she gets the care she needs.
     
  11. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    334
    Female
    Mid Lincs
    I have to say that caring for my mum who had dementia for 20yrs and caring for my OH 24/7 is a totally different kettle of fish. So I agree with Lawson58 that you may not have the full picture. Saying that of course it's not unusually for there to be a divide between a step parent and step children. It was my stepson who initially brought to my attention that his father was becoming a little eccentric in his ways and that referral to the memory clinic would be a good idea. I remember him saying 'let us (he and Dil) help you' and yet since that day we haven't seen him for dust. The good side of that is I don't get any interferance either!
    Regards money we used to give OHs grandchildren £100 each for birthdays and Christmas and there are 3 of them, not any more. They now get £10 my OHs comfort comes first and my duty as LPA holder is taken very seriously. I know you are hurting, it is appalling to see a loved one in a situation that is hard to come to terms with.

    (((hugs)))
     
  12. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    900
    Male
    Newcastle
    I have seen this from a different perspective when my wife's son (he and I are estranged) made a rare visit to her care home. I was worried about his tendency to speak before he thinks then disappear before any repercussions fall, so mentioned this to the manager. I was assured (and reassured) that, as I am next of kin, the home would take instruction only from me.

    I am sure that this is only right and proper and what seems to be happening here. It sounds as though your father's wife is doing her best for him @Mimi63 and is taking a responsible attitude to his finances. Whatever your personal feelings towards her, it would be a wise move on your behalf to acknowledge the reality of the situation and look towards supporting your father and his wife with their needs. By doing that you might find that you get a more rounded view of the care that is being provided to meet those needs.
     
  13. Baker17

    Baker17 Registered User

    Mar 9, 2016
    387
    These are wise words you have written as I am in the same position and the ongoing situation with my husband’s illness has not been helped by questioning of the very hard decisions that have had to be made
     
  14. Mimi63

    Mimi63 New member

    Nov 1, 2019
    5
    There are some very interesting points made here, and some which seem rather bothered about my mentioning money. It isn't worth my going into the reasons that my father has always believed he could absolve any guilt from the past by writing cheques. With regard to his great granddaughter ,he managed to convince her that he could magic a pound coin from each ear. Small things, but important to him. Dad is in the very early stages of vascular dementia so has 'fluctuating capacity '. He knows who I am & hasn't lost his sense of humour. We're able to take him out for meals and nobody would know that he is anything but a 'normal '(I hate the word, but it's easier than expanding) elderly man. I wonder if perhaps many of the people on here have relatives or spouses who are further along the path? To answer, briefly, the query of how much support we offered it was three days/two nights living in every week by myself, two days/one night or two separate nights by my daughter, and one full week in six by my sister; we also offered to organise visits by the Lodge members, bowls club friends & ex military people who offer support. I hope that people can see that it was certainly not just occasional help. I also asked that my father come to live with me, but by the time we knew what was going on 'behind the scenes' many decisions had already been made. Fighting these decisions was futile & only later events proved that the decisions had not been based on Dad's best interests (most terrifying of these being a suicide attempt & hospitalisation). Legal advice has indicated that the term 'next of kin' has no legal position within care homes & that it is a construct allowing the homes to communicate with one person rather than many. This only works if the person being contacted is willing to share the information & my biggest fear is that my father may suffer an accident that we are not aware of. Regardless of whether there is a good relationship between second or subsequent spouses & a person's children surely there is a moral obligation to ensure that everyone concerned is aware of any issues. Certainly I would inform my father's wife if I received information relating to him & wouldn't be put off doing so by her attitude or behaviour. Nobody has poa for health & welfare currently, which has caused a few issues in itself, though the care home do seem to realise that we probably know Dad better than anyone else & have responded positively to requests for urine tests (each time showing a uti present that had not been noticed), gp visits (again each time supporting reasons for concern) & pointers towards interests in order to prevent Dad from presenting as depressed/bored. Family relationships are different for everyone and we are very lucky to have divorced parents who still care about each other (my mother has visited my father whilst she has been staying with me). A marriage which produced three children between them clearly holds value for them both, and neither parent had any children after they divorced. Sadly, there are only two of us left. However defensive second/subsequent spouses might be surely everybody realises that parent/child love is not lessened by any romantic relationships? Perhaps we're just extremely lucky, though for the sake of humanity I hope that this isn't the case. I will telephone the helpline after the weekend, but now realise that our situation is too complex to try to explain with a finger & keyboard. Thanks to those that took the time to respond, and especially to those who sent hugs. I wish you all strength, hope & understanding as you walk the difficult path ahead.
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,260
    it’s nothing to do with dementia but I have experienced being shut out of devious

    I am adopted & was in contact with my biological Mum for over 20 years. My Bio Mum was never a well person & had married a man on the rebound from my adoption.
    ( my bio mum wrote letters & a book explaining things) this man let’s call him step Dad always made it clear he had children from a previous marriage & was always seemingly pleasant but ....
    I found my bio Mum when my children were very small after I had TIA’s & was curious to know the back ground health issues. My bio mum was the missing piece of the jigsaw puzzle in every way!
    Until she became terminally ill we had an open loving relationship with step Dad in the background being tolerated by my bio mum. Then when I couldn’t move in to look after my bio mum - I had 2 PWD my adopted parents to sort out! - my stepdad got nasty.
    I was there for the palliative nurse first visit & even the palliative nurse could see the issues with my stepdad.

    so after my step dad invented an argument - even though other family’s members were present I was effectively shut out of the care of my bio mum . She died within weeks with me not being allowed to see her by my stepdad & other family members

    I can only tell you that while my bio mum was ill it was my daughters 21st - & despite my biosmums wishes no card or small token was given. Step dads own daughter had her 50th & had a party at my bio mums home - we saw on Facebook later & a second hand convertible appeared. my own 50th birthday earlier in the year I realised how poorly my bio mum was before diagnosis & kept saying to her we would celebrate together when she was a little better & the weather was nice - a trip to the beach & a picnic!

    So my bio mum passed & I wasn’t allowed to be present I saw her when she was put onto the morphine pump & unconscious.

    it turns out that my step dad had his solicitor draw up new wills & get them signed the day before this happened. Excluding all my biomums wishes & becoming sole benefactor. Not unusual in a marriage I know but my Mum had a will held at a solicitor already & this this became null & void. Yes the step dad got rid of all paper evidence! & as I wasn’t allowed access to my mum I couldn’t ensure her true wishes were adhered to. My mum & step dad didn’t live as husband & wife - a front was put on to the public; my step dad had left my mum for another woman & when that broke down mum let him live with her & her mother who had set up a profitable business together.
    My step dad continued relations with women & still does, even when my mum was on her deathbed.

    There are two sides to every story & people . We can only speak from our personal experiences.

    Personally as a LPA for both my adopted parents I honour their commitments to charities, church etc, & ensure cards & presents are sent to family members. That’s part of being a LPA. Yes I watch the pennies for both of their accounts but it’s not my money & honouring the wishes of a PWD is part of being a LPA.

    My parents aren’t well off & I am happy to release equity on the family home when the time comes to keep my parents as they wish to be looked after.

    I realise that the equity is Mum & Dads not mine.

    it’s a different perspective, but the marital accounts & savings are clearly separated out. 50/50 for joint & saving in your own name.

    So however the finances are the persons wishes should be adhered to unless the pot is below the financial threshold of £11k.

    I hasten to add I don’t accept anything for myself & prior to Mum s dementia diagnosis put any monies into an account which I then used to pay some of Dads care bills!
    But I still allow her the pleasure of giving gifts to others - Christmas presents to her friends & carers & family. My dad doesn’t have capacity to make these decisions so it comes from the joint account.

    money always is a divisive topic. I hope no one judges me on my decisions as I have made them openly & in my parents best interests.
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,986
    Female
    All of us who have parents further along the path also experienced them during the earlier stages, of course. My mother had a long phase of being able to go into 'host mode' (as it is called here) which meant that for visitors other than her main carer she could 'put on a show of normality'. It's only when you're with someone full time that you realise how much they have deteriorated, which can be quite frustrating for the main carer - and I speak as someone who didn't realise how much my mother had deteriorated because she was good at concealing it from me.

    I can understand it is very difficult when you feel you are not kept in the loop by your father's wife, but it is good that you are able to visit regularly and give positive input which the CH are happy to take on board. That in turn means the CH will be able to and understand his wants and needs and take good care of him. I wish you the best for the future.
     
  17. Lawson58

    Lawson58 Registered User

    I think that many step parents tread a tortuous path and for most it is a no win situation that is fraught with a degree of animosity, sometimes on the part of both parties.

    We married 15 years ago, both in our sixties and with adult children. My husband already had a difficult relationship with his sons so I decided that I was going to stay out of their issues because I didn't want to be the wicked step mother who came between them and their father.

    Four months after we were married, one son tried to influence what we had in our wills which I found to be quite disrespectful. Though they live half a world away now and have no input into their dad's care, they have destroyed any chance of a relationship with their dad, all on their own without any help from me. I have never met the other son so refuse to accept any blame for his actions.

    Fifteen years down the track, after a huge row with one of the sons, numerous insults on Facebook, my husband finally said to me that he thought that it was time to change our wills. And I thought Hallelujah !!!!!

    We discussed it for a few days then I downloaded a standard will that would do just fine. We completed them and I gave him time to rethink his decision again.. Our GP was very happy to write a statement of testamentary capacity. So it's all done and his children and drandchildren will not be beneficiaries from either of our wills.

    These two boys had no idea of what I have done to care for their father and never really displayed any interest. They wouldn't stop to think what the illness was doing to me and didn't care, didn't care that I was the one who saved his life when I had to give him CPR. and cared for him after hernia operations, prostate surgery, emergency trips for an internal bleed, and transfusable nosebleeds.

    Their main issue was that they kept asking, (Sorry, demanding would be more appropriate ) for money. We have a modest little home and our car is over twelve years old and we haven't been on holiday for years.

    They seem to think we were their private bank and that we should dole out money when they demanded it. We have some savings but we don't know how long we will live and how long that money is going to be needed.
    Pointless trying to explain that idea to people who don't wish to know. But they continued to harass and abuse us without caring that if we gave them the money, they required , we could end up broke.

    We would make the effort to send presents for birthdays, Christmas, a wedding. After years of doing this and never receiving any acknowledgement or a thank you, we stopped it.

    I feel sure that if you asked them why the situation had deteriorated to its present state of no communication at all, they would blame me. According to one grandchild, I am the ferret faced witch who ruined everything.

    There is so much more to this story but I hoped I have made my point. They felt that they had certain entitlements as his sons and tried to bully my husband into giving them access to our money. Because we didn't cooperate, we became the worst in the world. They fed off each other's discontent and stirred each other up to the point of being quite self righteous in their demands for money.

    I know what it is like to be on the receiving end of all this nastiness and I also know that I control how much money he gets to spend because he cannot use online banking and cannot remember PINs to use for his card. That must really annoy them but can't be helped.

    The sons have no idea of what we have been through together in the last fifteen years. They don't believe that he has Alzheimer's and what that means to be his carer. But they are judging me, they are coming to conclusions based on what they think they know, or perhaps what they want it to be rather than the truth, my simple truth.
     
  18. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    900
    Male
    Newcastle
    #18 northumbrian_k, Nov 3, 2019
    Last edited: Nov 3, 2019
    You have obviously thought long and hard about ways in which you could support your father (and his wife) in looking after him at home. You deserve to be commended for that @Mimi63. However, I have a feeling that the complicated arrangements you suggested, relying on people who have their own commitments and lives to lead, could easily break down. I also wonder how much friends, the bowls club and so on would really help. As dementia progresses friends and acquaintances often step away and are rarely if ever seen.

    You have mentioned lack of Power of Attorney for Health and Welfare. That is not needed (and could not be used) if your father still has capacity. If he has capacity it may be a good idea to ask him to set it up for when he hasn't. If things have progressed beyond that already and he does not have capacity you may wish to consider the possibility that being in a care home is the most appropriate way of looking after him.

    My wife is in a care home, not because I have dumped her there or because that is what I want but because - to my eternal sorrow - I am no longer able to keep her safe and properly cared for at home. That really hurts after 40 years of being together but I know that I have done the best for her.

    Wishing you well
     
  19. sausagedog

    sausagedog Registered User

    Aug 22, 2019
    62
    Reading between the lines there’s possibly a certain amount of denial/acceptance mixed in with hurt feelings and perhaps still much upset from years ago when the parents got divorced for the writer. Parents break ups can often cause upset even in adulthood for the child - this appears to be the case here. Perhaps some sort of counselling would help the writer to deal with the situation as things are with her father.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    2,260
    I’m so sorry that you don’t have the support you require & deserve from your OH family; dementia is a cruel disease- but it sounds like the relationship between father & sons was broken long before you married.

    sending ((((((((hugs))))))))) you’ve been through the mill, one way & another

    take care

    ps
    My beetle is 16 years old & I love driving her, Betty; nothing wrong with having a few miles on the clock! x
     

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