My brother in law has Alzheimer's Disease. ( Long post). Might be in several parts.
Just wanted to make a post to raise people's awareness, really. I live in the north of Ireland but my sister and her husband live in Manchester. My brother in law started having memory problems about two years ago. My sister, just to utterly complicate things, has serious mental health problems. Borderline Personality Disorder, OCD, Depression. Her husband kept forgetting basic things and my sister thought her husband was doing it on purpose to wind her up. She can't help that; it is just part of her problems, where she believes people are always out to deliberately annoy her. Her husband kept deteriorating, and my sister was in tears to me on the phone every day, several times a day. One day she told me she can't cope, and that she is going to kill her husband and then kill herself. They have pre-paid funeral plans in place, and she told me this was why they did this, for when the time comes. Utter panic set in on my part. I thought do I dial 999 or do I contact social services? I contacted Social Services, as I thought my sister would be in trouble if I called the police. A Social Worker phoned me the next day and said, "Tell me all about your sister". My sister had already given me the go ahead to tell them everything, so I did and I left nothing out. The Social Worker wanted to know all about my sister's childhood, etc. Now my sister made my childhood a misery due to her mental health problems. She is 9 years older than me. I am 52 and my sister is 61. Her husband is just turned 59. I'll leave this for now, so it's not too long for people to read.
Original post by markova21
Just wanted to make a post to raise people's awareness, really. I live in the north of Ireland but my sister and her husband live in Manchester. My brother in law started having memory problems about two years ago. My sister, just to utterly complicate things, has serious mental health problems. Borderline Personality Disorder, OCD, Depression. Her husband kept forgetting basic things and my sister thought her husband was doing it on purpose to wind her up. She can't help that; it is just part of her problems, where she believes people are always out to deliberately annoy her. Her husband kept deteriorating, and my sister was in tears to me on the phone every day, several times a day. One day she told me she can't cope, and that she is going to kill her husband and then kill herself. They have pre-paid funeral plans in place, and she told me this was why they did this, for when the time comes. Utter panic set in on my part. I thought do I dial 999 or do I contact social services? I contacted Social Services, as I thought my sister would be in trouble if I called the police. A Social Worker phoned me the next day and said, "Tell me all about your sister". My sister had already given me the go ahead to tell them everything, so I did and I left nothing out. The Social Worker wanted to know all about my sister's childhood, etc. Now my sister made my childhood a misery due to her mental health problems. She is 9 years older than me. I am 52 and my sister is 61. Her husband is just turned 59. I'll leave this for now, so it's not too long for people to read.
you did the right thing contacting social services.
A social worker went round to see them later that afternoon. Told my sister ( who had been begging the GP for her husband to be taken in somewhere temporarily for a bit of respite) to pack a bag of her husband's belongings. They would be back in the morning to take her husband to a care home to be assessed and so she could have a bit of a break. That was five months ago, and he is still living in there. My sister is currently liaising with a solicitor to try and get him home. The social worker , very cleverly, once he was inside the care home had a DoLS put in place. ( Deprivation of Liberty Safeguards), which meant they could keep him there as long as they wanted. The social worker actually thanked me for intervening; as in these situations she said, they don't get to hear of problems until much further down the line. The GP was utterly useless, and despite my sister's repeated pleas, did absolutely nothing. Long story short, they didn't know what was actually "wrong" with him at first. CT scans, etc made them at first think he was suffering from Vascular Dementia. Then they thought it might be Frontotemporal Dementia, and stuck with that diagnosis for quite some time. An Assessor went in to visit him in the home. She spent an hour and a half with him. She telephoned me and spoke to me. She had asked the social worker for my telephone number, even though I live in Ireland and am only the sister in law. I'm guessing it's partly because my sister is not the easiest person, temperament wise, to deal with. Plus her own MH problems too. The Assessor told me in all her years she has never come across a case as severe as my brother in laws. She said she asked him, " Go you want to go home and live with your wife?" Answer, yes. Then , she waited a few minutes, and said to him, "Do you want to carry on living here?" Answer, yes. She said there was just no cognition there at all. Nothing. She told me he had been "going to the toilet" in the middle of the main sitting room, in front of everyone. Just pulling his pants down and doing both toilet things, right there and then. Pulling his incontinence pads down as well. He isn't incontinent at all. He just hallucinates and believes he is on a toilet. She told me the care home cannot cope with him at all. This was all a few months ago. He has deteriorated much further since then.
Aww, I hope things work out and that your family has the support to cope with this situation.
The Assessor actually told me that he is in such a bad way he will never be allowed to go home. I didn't tell my sister this. I thought, if they come to this conclusion, i'm not going to be telling her this over the phone. Someone far more qualified than me can explain it to her, face to face. My sister has taken a dislike to this Assessor. Thinks she is interfering, and was annoyed that she phoned me for my input. My sister and her husband both have advocates. I don't know what my brother in laws are like, but to be honest I think my sisters are a bit useless and are giving her false hope. Ditto her solicitor. Between them they are starting a case to try and get him home. If the solicitor bothered contacting the social worker/Neurologist etc then he would, I think, get a completely different take on things. So she has one group of people actively encouraging her to try and get her husband home; telling her she will be able to cope with caring for him with the support of carers. Then there is this other person, the assessor , who told me he is never going to be allowed home. He has a further visit from the Neurologist the other day, but my sister hasn't been told what happened.
Now to REALLY complicate things. My brother in laws family. They have been married for 20 odd years. I've met his sisters and one of his brothers a few times. He has 6 brothers and sisters in total. His mother is elderly and has dementia. His siblings are, to put it mildly, not the nicest of people. Remember quite clearly at my sister and her husband's wedding. ( The second time they got married. They were married young and it didn't work out. Met up again by chance years later, and ended up getting married all over again. They've been together ever since). So, the second time they got married to each other. My sister wanted a "big do" this time. Dress, church, etc. They were married in a registry office first time around. They had a lovely day that was perfect. Until the reception. When one of her husband's sisters disclosed to a room full of people all sitting round, that the bride has major mental health problems, and is "mental". (Her words). My sister rushed off into the bathroom, in tears, in her wedding dress. She didn't want all her extended family, plus her husband's entire family knowing about her MH problems. But her sister in law decided it would be fun to announce it to everyone on her wedding day. That is the type of people we are talking about here. My sister has a problem with ornaments. She feels that they "stick out" and give her a headache if not placed exactly as she wants them. She doesn't mind having a few pieces around, as long as no-one touches them. People who know her know this. Including her in-laws. Her sister in law used to call round to visit her, and take her young son with her. As soon as the lad was through the door, he would go straight up to my sisters ornaments, pick them up and look at them, then put them back. This would give my sister a headache, but she felt she couldn't say anything as he was only a child. She spoke to his mother on her own a few times but it didn't stop. Come round to visit, and mess with her ornaments. One day my sister spoke to the lad when he was on his own. Asked him why does he always touch the ornaments whenever he comes to visit with his mum? His answer was that his mum had told the lad that my sister really likes it when people not only look at, but pick up and touch her ornaments, as it makes her happy that people are paying such an interest in them. She confronted the mother, who denied having coached the boy to pick up the ornaments. But my sister knew she was lying. This family have stolen literally thousands of pounds off their own mother. She was given goodness knows how much in compensation after her husband ( their father) was hit by a bus. She didn't trust banks, so kept thousands of pounds in cash in her bedroom. All the family knew where this money was. It started going down and down. She was losing her memory by this point, so didn't realise. Suddenly, this sister in law, with the son who touched the ornaments, bought herself a fish and chip business, in cash, out of the blue. She had been on benefits her whole adult life, so where did she get that kind of money from? No-one in her family seemed to question it. Or maybe they all knew, and said nothing as they had all been helping themselves too. My sister's in- laws really are the type of family you would see on the Jeremy Kyle show, and that's not a compliment. Always threatening to batter someone etc. Even their own relatives. These people are all in their fifties and sixties. You'd think they would know better at their age. My sister and her husband hate them all, and always have. Yet because of my sister's MH problems, and I suppose came across as being difficult and temperamental to deal with at times, the social worker asked me to ask my sister to give her (the social worker) her sister in laws phone number. That was about four weeks ago. The last thing my sister wanted was her husband's family involved in any way in the decision making process for her husband. But that's exactly what has happened. Which for my sister, is just another layer on to the horrendous time she is going through.
Original post by markova21
Now to REALLY complicate things. My brother in laws family. They have been married for 20 odd years. I've met his sisters and one of his brothers a few times. He has 6 brothers and sisters in total. His mother is elderly and has dementia. His siblings are, to put it mildly, not the nicest of people. Remember quite clearly at my sister and her husband's wedding. ( The second time they got married. They were married young and it didn't work out. Met up again by chance years later, and ended up getting married all over again. They've been together ever since). So, the second time they got married to each other. My sister wanted a "big do" this time. Dress, church, etc. They were married in a registry office first time around. They had a lovely day that was perfect. Until the reception. When one of her husband's sisters disclosed to a room full of people all sitting round, that the bride has major mental health problems, and is "mental". (Her words). My sister rushed off into the bathroom, in tears, in her wedding dress. She didn't want all her extended family, plus her husband's entire family knowing about her MH problems. But her sister in law decided it would be fun to announce it to everyone on her wedding day. That is the type of people we are talking about here. My sister has a problem with ornaments. She feels that they "stick out" and give her a headache if not placed exactly as she wants them. She doesn't mind having a few pieces around, as long as no-one touches them. People who know her know this. Including her in-laws. Her sister in law used to call round to visit her, and take her young son with her. As soon as the lad was through the door, he would go straight up to my sisters ornaments, pick them up and look at them, then put them back. This would give my sister a headache, but she felt she couldn't say anything as he was only a child. She spoke to his mother on her own a few times but it didn't stop. Come round to visit, and mess with her ornaments. One day my sister spoke to the lad when he was on his own. Asked him why does he always touch the ornaments whenever he comes to visit with his mum? His answer was that his mum had told the lad that my sister really likes it when people not only look at, but pick up and touch her ornaments, as it makes her happy that people are paying such an interest in them. She confronted the mother, who denied having coached the boy to pick up the ornaments. But my sister knew she was lying. This family have stolen literally thousands of pounds off their own mother. She was given goodness knows how much in compensation after her husband ( their father) was hit by a bus. She didn't trust banks, so kept thousands of pounds in cash in her bedroom. All the family knew where this money was. It started going down and down. She was losing her memory by this point, so didn't realise. Suddenly, this sister in law, with the son who touched the ornaments, bought herself a fish and chip business, in cash, out of the blue. She had been on benefits her whole adult life, so where did she get that kind of money from? No-one in her family seemed to question it. Or maybe they all knew, and said nothing as they had all been helping themselves too. My sister's in- laws really are the type of family you would see on the Jeremy Kyle show, and that's not a compliment. Always threatening to batter someone etc. Even their own relatives. These people are all in their fifties and sixties. You'd think they would know better at their age. My sister and her husband hate them all, and always have. Yet because of my sister's MH problems, and I suppose came across as being difficult and temperamental to deal with at times, the social worker asked me to ask my sister to give her (the social worker) her sister in laws phone number. That was about four weeks ago. The last thing my sister wanted was her husband's family involved in any way in the decision making process for her husband. But that's exactly what has happened. Which for my sister, is just another layer on to the horrendous time she is going through.
This just sounds like a really awful predicament to be in, and the family stuff really does not help at all. How are you doing with all of this?
Well it's stressful, as you can imagine. Sean my 23 year old son, is frankly sick of hearing me go on about it, and it upsets him when he sees me stressed because of it. All I can really do is be there for my sister at the other end of the phone. I am in Ireland and she is in Manchester. She doesn't have internet access, a computer or even a telephone landline, so is forever phoning me up, asking me to look up this and that, or contact this one or that one for her on her behalf. I just try and do my best for her. She has no-one else.
Original post by markova21
Well it's stressful, as you can imagine. Sean my 23 year old son, is frankly sick of hearing me go on about it, and it upsets him when he sees me stressed because of it. All I can really do is be there for my sister at the other end of the phone. I am in Ireland and she is in Manchester. She doesn't have internet access, a computer or even a telephone landline, so is forever phoning me up, asking me to look up this and that, or contact this one or that one for her on her behalf. I just try and do my best for her. She has no-one else.
That's a massive amount of pressure on you. What would be the best thing we/I could do to support you through this? Truly don't mind listening, if it would help. Anything really.
Many thanks, @Pathway. I'm fine I guess. I do think eventually I will have to move back to Manchester to physically be there for her, and me and my son have discussed this. Hopefully it is going to be many years away, if it comes to it. People I have spoken to tell me she is not my responsibility and if I am happy and settled living here I shouldn't have to give that up to move back to Manchester. Which is all very well and good. But she has no-one apart from her husband and me. No children, or other siblings. She was upset when I told her back in 1999 I was moving back permanently to Ireland with my then 2 year old. He is her only niece or nephew and she hasn't seen him grow up. In fact she has only seen him ( and me) I think on two separate occasions; the last time being before Sean went to secondary school. He's 23 now. ( I don't want to tempt fate as it might all go belly up. But my sister likes to "squirrel away" money. She has kindly offered to give Sean about two thousand pounds or thereabouts towards his £4,000+ uni tuition fees, which we have to pay ourselves for the first year. That's unless she might need the money to pay for her husband to go private to pay for a second opinion or something. I told her I will repay her every penny, but she said no, that it is a gift for Sean. Just wow.)
Original post by markova21
Many thanks, @Pathway. I'm fine I guess. I do think eventually I will have to move back to Manchester to physically be there for her, and me and my son have discussed this. Hopefully it is going to be many years away, if it comes to it. People I have spoken to tell me she is not my responsibility and if I am happy and settled living here I shouldn't have to give that up to move back to Manchester. Which is all very well and good. But she has no-one apart from her husband and me. No children, or other siblings. She was upset when I told her back in 1999 I was moving back permanently to Ireland with my then 2 year old. He is her only niece or nephew and she hasn't seen him grow up. In fact she has only seen him ( and me) I think on two separate occasions; the last time being before Sean went to secondary school. He's 23 now. ( I don't want to tempt fate as it might all go belly up. But my sister likes to "squirrel away" money. She has kindly offered to give Sean about two thousand pounds or thereabouts towards his £4,000+ uni tuition fees, which we have to pay ourselves for the first year. That's unless she might need the money to pay for her husband to go private to pay for a second opinion or something. I told her I will repay her every penny, but she said no, that it is a gift for Sean. Just wow.)
Oh wow, how do you feel about moving back to Manchester? Sometimes I guess we have to do things even if it isn't really our responsibility to. I guess all you can do in that situation is stay aware of your boundaries with her. Will your son stay in Ireland? That is a very generous offer of her as well!
Wow he has alzeihemers so young. Only 59??
Original post by Hannah0505
Wow he has alzeihemers so young. Only 59??
Yes. Plus sadly, he's probably had it for the last two years.
I've been following your thread and can I'm sending you all the love.
When I was 20 my mums mum was diagnosed with vascular dementia, she lived across the country very near to my mums siblings. Her siblings are benefit scrounging (actual scroungers, not just people who are entitled to benefits who I support), have zero aspirations beyond creating drama or getting their next penny. They stole off my grandmother and left her starving (took her to the shop to buy food, but taking the majority of the money leaving my grandmother with little to sustain her) and totally denied anything was wrong with her to save their own sense of guilt.
My mum intervened when she realised how bad it had gotten, and shed finish her job, come home and pack and drive across the country just to look after my grandmother. Siblings were resentful of this as it interfered with them stealing money and they seemed to have a matar competition going and didn't like that they couldn't look as though they were doing more for my grandmother than they, so they pushed to get her sectioned. She ended up in an abusive home and sided on the home's side out of spite against my mum who tried to get her moved. Thankfully, my mum managed to move my grandmother to a more suitable home, but the continued abuse from her siblings meant she eventually had to walk away following a breakdown.
I try not to feel anger, but I still feel angry. It was traumatic to see my mum constantly hounded over the phone, every day, sometimes multiple times a day and my and my mums life was continuously threatened to be turned upside down to cater to other people who my mum saw as her responsibility to please/make happy. We were going to move across the country, my mum was going to leave her job, at one point my grandmother was going to be moved to a facility near us as it was purely my mum caring for her and not her siblings so why was my mum the one inconvenienced.
During this time I received some very difficult medical diagnoses and in the middle of all of that I nearly committed suicide due to a change in medication from the doctor. My mum wasn't able to give me the love and attention I needed - and she's the most caring and loving mother alive - because she was already so overwhelmed and beaten down by the constant hounding of her wider family who she now realises never deserved her attention. It messed me up, not that my mum knows any of this of course, because even though my mum would do everything to hide it from me I was the one who had to see the person I loved get continuously abused because of her 'family'.
I know our experiences are of course different, mine different from your son also, but I don't understand why you should even consider moving when it's your sister who needs the support. She should move to you. Don't uproot your son's entire life for someone who, from what you've said, has been totally uninvolved in his life anyway. If she won't move to you, then you need to ask yourself why you're so willing to do something that she wouldn't do for you when you've already given and done so much.
When I was 20 my mums mum was diagnosed with vascular dementia, she lived across the country very near to my mums siblings. Her siblings are benefit scrounging (actual scroungers, not just people who are entitled to benefits who I support), have zero aspirations beyond creating drama or getting their next penny. They stole off my grandmother and left her starving (took her to the shop to buy food, but taking the majority of the money leaving my grandmother with little to sustain her) and totally denied anything was wrong with her to save their own sense of guilt.
My mum intervened when she realised how bad it had gotten, and shed finish her job, come home and pack and drive across the country just to look after my grandmother. Siblings were resentful of this as it interfered with them stealing money and they seemed to have a matar competition going and didn't like that they couldn't look as though they were doing more for my grandmother than they, so they pushed to get her sectioned. She ended up in an abusive home and sided on the home's side out of spite against my mum who tried to get her moved. Thankfully, my mum managed to move my grandmother to a more suitable home, but the continued abuse from her siblings meant she eventually had to walk away following a breakdown.
I try not to feel anger, but I still feel angry. It was traumatic to see my mum constantly hounded over the phone, every day, sometimes multiple times a day and my and my mums life was continuously threatened to be turned upside down to cater to other people who my mum saw as her responsibility to please/make happy. We were going to move across the country, my mum was going to leave her job, at one point my grandmother was going to be moved to a facility near us as it was purely my mum caring for her and not her siblings so why was my mum the one inconvenienced.
During this time I received some very difficult medical diagnoses and in the middle of all of that I nearly committed suicide due to a change in medication from the doctor. My mum wasn't able to give me the love and attention I needed - and she's the most caring and loving mother alive - because she was already so overwhelmed and beaten down by the constant hounding of her wider family who she now realises never deserved her attention. It messed me up, not that my mum knows any of this of course, because even though my mum would do everything to hide it from me I was the one who had to see the person I loved get continuously abused because of her 'family'.
I know our experiences are of course different, mine different from your son also, but I don't understand why you should even consider moving when it's your sister who needs the support. She should move to you. Don't uproot your son's entire life for someone who, from what you've said, has been totally uninvolved in his life anyway. If she won't move to you, then you need to ask yourself why you're so willing to do something that she wouldn't do for you when you've already given and done so much.
Thank you. I honestly think the only time I would be willing and happy to move back to England would be if my son were to start a new life over there; maybe with a job, wife, kids etc. Then there really wouldn't be much point in me staying here on my own. As for my sister; she has said recently about her and her husband moving over to be close to me. But I know that's only because she wants to get as far away from his family as possible. It's not a practical solution, and I doubt very much her husband's team of social workers, psychiatrists, Neurologists etc would be too happy about it. In fact they would most probably issue him with another DoLS to prevent that from happening.
Original post by markova21
Thank you. I honestly think the only time I would be willing and happy to move back to England would be if my son were to start a new life over there; maybe with a job, wife, kids etc. Then there really wouldn't be much point in me staying here on my own. As for my sister; she has said recently about her and her husband moving over to be close to me. But I know that's only because she wants to get as far away from his family as possible. It's not a practical solution, and I doubt very much her husband's team of social workers, psychiatrists, Neurologists etc would be too happy about it. In fact they would most probably issue him with another DoLS to prevent that from happening.
Yeah, I'd like to highlight my post isn't judging or anything, but I wish someone who'd gone through a difficult experience surrounding a similar issue would have communicated to my mum how much it could effect me in turn - someone who seemingly wasn't all too involved at all.
What I don't understand (and this is from my own experiences in a difficult situation) is why medical practitioners are calling you when you're not your brother-in-law's Power of Attorney. Unless he has one stipulated from when he was of sound mind, that role will fall to your sister as his wife, unless you're your sister's Power of Attorney? Your sister will have a case with her solicitor there because Power of Attorney does have an influence over best interest meetings and the implementation of a deprivation of liberty. Not saying you're at fault at all, but from what I've gathered the medical professionals involved haven't strictly followed what they ought to out of the presumption your sister isn't mentally able to cope with the demands of the situation.
I know what you're saying. His team a few weeks ago wanted a conference call with everyone present. Including all his siblings. His wife too, but because she doesn't have skype, she wasn't invited to listen in to the meeting. Was told she would receive a transcript of exactly what was said. She never received anything. She has no idea what was discussed. As for why they were calling me. Well I just think it was to speak to someone "rational" was was on my sister's side of the family.
(edited 3 years ago)
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