What to do?

[xyz]

Hi All,

Crikey, how does this work.....

My mum who has mental issues (but the medical profession fail to recognise this) is treated as my dads carer. My mum has never looked after him, in fact she mocks and antagonises him, she never cooks for him either.

My dad has alzheimer's and works full time at 70yrs old...without him the house would go under. My mum fights with my dad everyday from the minute he gets home from work. The other day he went to bed at 8pm without eating dinner as my mum stated yet another argument. Makes me laugh, my mum a carer she wouldn't know how to spell the word. I'm disgusted, I've been the carer and never have I got support apart from TP'ers.

In my opinion he is being bullied by her and he looks very unwell. My concern is how to protect him.

My mums mental instability means I am no longer talking to her as she plays far to many games and highly manipulative. She has the whole medical profession fooled and poor dad is suffering. I feel like he is the vulnerable person and when we have mentioned this to the daft memory clinic nurses they ignore anything we- dad and I say...who would believe someone with alzheimer's and who would listen to the actual carer when my mum accused me of being the root of all her issues/tension. See my mum told the CPN I organised to support/educate her after my dads diagnosis. Never did i imagine she would make up elaborate stories and false accusations. The CPN nurses have told me to take a step back and let my mum intervene and attend my dads memory appts. She has memory and mental issues herself, how can I trust someone like her with my dads care. My dad doesn't want het attending the appts. The CPN breach trust and still reveal details of my dads previous appts to her?!

My dad is getting tired and fed up that no one will listen and he can not reason with my mum. He wants to stop his medication and stop seeing the memory clinic....its almost like he is giving up and wants to die. He is too scared to spend time with me because my mum gets angry at him or argues with him for doing so. I feel I am loosing my dad because of her.

Can anyone advise please?

 

[Crikey]

Hello, and sorry to read about the situation you and your parents are in. It all sounds rather unpleasantly familiar--my father has mixed Alz and Vascular dementia, and my very difficult and rather unbalanced mother was being incredibly unpleasant to him, bullying and shouting and doing very little in the way of actually looking after him or supporting him. She's been beyond horrible. It's been a very difficult year, which has lead to my father moving in with my husband and me just after Christmas when she pretty much threw him out and declared she never wanted to see him again.

Like your mother, mine can do a very good public-facing act of being the sensible, concerned wife and carer, while the reality is an awful lot messier and nastier. The bit about the memory nurses suggesting that she take the lead, despite his insistence otherwise? Yes, that too.

I was lucky in that my father was willing to talk about his illness with me--and over the year we moved from polite fictions about "contingency plans" to making some big changes (like getting the LPAs sorted out, and getting him diagnosed) which helped him feel comfortable enough to be able to talk about how unhappy and worried he was with the situation at home. She would have fought me every step of the way, but we kept things very quiet.

There has been a lot of drama--mostly from my mother--and that's not going away quickly, but now I know that my dad isn't being shouted at and neglected every day, messing up his tablets, losing weight, and getting lost. We--my sister and I--tried to do what we could to protect him in his own home, but we were both too far away. The big Christmas Explosion has turned out to be a blessing. My mother is furious, and feels abandoned--she still expects him to look after her and organise things, and refuses to accept that he just can't any more. I am the evil daughter who has ruined her life. Our lives are turned upside down, but, so far, it's working out with him living with us. Not everyone is in a position to do this, but I'm very glad we could. He's doing a lot better: if nothing else, the massive drop in stress has dropped the extra risk relating to the vascular side of things.

Sorry, that's a lot of words and not much advice. Advice, for what it's worth, and based on my experience: don't try to change your mother, because it's probably not going to work, but don't give up on your dad and see what the two of you can sort out behind the scenes. It's bloody hard, though. And you have a huge amount of sympathy and wishes of strength from me. (And the people here on TP have been amazingly supportive through this journey so far, and I don't think we could have achieved this without their wisdom and kindness.)

 

[Pacucho]

I am sorry to read of the problems you and your father are having. I wonder whether you have a local Alzheimer's Society branch near you which your father could go to and seek one-to-one advice.
Hope this helps

Paco

 

[xyz]

Hello, and sorry to read about the situation you and your parents are in. It all sounds rather unpleasantly familiar--my father has mixed Alz and Vascular dementia, and my very difficult and rather unbalanced mother was being incredibly unpleasant to him, bullying and shouting and doing very little in the way of actually looking after him or supporting him. She's been beyond horrible. It's been a very difficult year, which has lead to my father moving in with my husband and me just after Christmas when she pretty much threw him out and declared she never wanted to see him again.

Like your mother, mine can do a very good public-facing act of being the sensible, concerned wife and carer, while the reality is an awful lot messier and nastier. The bit about the memory nurses suggesting that she take the lead, despite his insistence otherwise? Yes, that too.

I was lucky in that my father was willing to talk about his illness with me--and over the year we moved from polite fictions about "contingency plans" to making some big changes (like getting the LPAs sorted out, and getting him diagnosed) which helped him feel comfortable enough to be able to talk about how unhappy and worried he was with the situation at home. She would have fought me every step of the way, but we kept things very quiet.

There has been a lot of drama--mostly from my mother--and that's not going away quickly, but now I know that my dad isn't being shouted at and neglected every day, messing up his tablets, losing weight, and getting lost. We--my sister and I--tried to do what we could to protect him in his own home, but we were both too far away. The big Christmas Explosion has turned out to be a blessing. My mother is furious, and feels abandoned--she still expects him to look after her and organise things, and refuses to accept that he just can't any more. I am the evil daughter who has ruined her life. Our lives are turned upside down, but, so far, it's working out with him living with us. Not everyone is in a position to do this, but I'm very glad we could. He's doing a lot better: if nothing else, the massive drop in stress has dropped the extra risk relating to the vascular side of things.

Sorry, that's a lot of words and not much advice. Advice, for what it's worth, and based on my experience: don't try to change your mother, because it's probably not going to work, but don't give up on your dad and see what the two of you can sort out behind the scenes. It's bloody hard, though. And you have a huge amount of sympathy and wishes of strength from me. (And the people here on TP have been amazingly supportive through this journey so far, and I don't think we could have achieved this without their wisdom and kindness.)

Hi Crikey,


Reading about your situation has helped, thank you! I'm grateful to you for sharing your experience. Often I do feel alone and yet your situation is remarkably similar. I'm sorry to hear you have had to battle through this but very pleased your dad is at a happier point in life away from your mother. I think If we- my sister and I (how uncanny) could get dad to move to my sisters then he would be happier and the vascular alzheimer's wouldn't eat away at him so quickly. Being in this volatile, stressful environment doesn't help him. He loves working as he is out of the house, he gets on and actually cracks a lot of jokes at work but when he comes home he keeps to himself while mum tears strips of him for something else. Your poor dad, he certainly had a time of it living with your mum. Its worrying as a child to see your parent deteriorate in front of you.


Your mother and mine exhibits the same behaviour. I live at home and trying to protect my dad against my mums actions but that just causes more stress. My dad says he doesn't need protecting...he does tho. My mum has no one to talk to during the day other than a rotten sister who is instigating my mums recent behaviour. Mind you she was like this before only now its much worse as she feels powerful due to her sister who lives 60miles away. When my dad gets home she argues with him because she has had no human interaction. I feel sorry for her sometimes but she has a bad attitude, sneaky, manipulative, plotting....so to me why put myself in harms way- she is harming after all.

Before Xmas my sister and I spoke to dad about a divorce or moving out. He agreed then changed his mind, disagreed then changed it back and now says he will see how things so with my mum. Granted i cant force him to divorce or separate. If he moved out which would be my goal, my dad would still be expected to be financially responsible for the house they currently live in which is mad. Things will never change but he says he cant walk away as she is unstable and feels this is his duty. So what to do? I have pointed out what she is doing to him but he fails to see it. He still thinks he doesn't have alzheimer's.

Wow, your mum.....I cant believe the similarities. Mine is the same in that she expects/demands my dad looks after her. What she wants, she gets or there are tantrums etc. I think its absurd and how on earth does the medical profession think she is his carer simply because she is his wife- and what??!! I think its highly ridiculous that the memory nurses don't listen to my dad about what is going on at home. I almost feel like going private only I cant afford it. I have spoken to dad about POA but he keeps dismissing it. I'm glad your dad was open to this, I think its fantastic how you managed to get it all done and know your dad is in a safe environment now.

I too am the evil daughter and so is my sister. My brother can do no wrong and strangely she listens to him but he doesn't live in the UK. My mum has disowned my sister and I don't speak to my mum or I'll be accused of something new and this time I will take legal action, enough is enough someone has to teach her a lesson one she will not forget and one her sister cant do anything about.

When does it become easier, feels like everyday there is something new to deal with.

Thank you so much for your reply, I really hope things continue going well for your dad. Yourself and your sister have done the right thing, well done!!

 

[xyz]

I am sorry to read of the problems you and your father are having. I wonder whether you have a local Alzheimer's Society branch near you which your father could go to and seek one-to-one advice.
Hope this helps

Paco

Hi Paco,

Thank you for your advice. That is a good idea but been there and done that. I have to say it was not a fruitful meeting. The lady said my mum and children have to be on the same page as my dad will deteriorate and things will be more difficult to discuss then. All well and good saying that but I cant get my mum the mentally unstable one to be on the same page as she has said clearly she is not interested in learning about alzheimer's.

She hates the attention is on my dad so she plays the victim to anyone who will listen- CPN nurses, shrink, Dr's, relatives, neighbours, Tesco check out girls...random strangers...its cry me a river time. I explained this and she said I was angry towards my mum....well sherlock, that would be true but she failed to again ask the question WHY?? I simply didn't get up on morning (when I had a very close relationship with my mum) and thought I know lets choose to be angry.

I agree we need to be on the same page, logic dictates but how can I get someone like my mum to pick up a book, let alone read it to be on the same page. Now english is not her mother toungue so herein lies more issues. When the CPN, consultants, Dr's talk to her she doesn't understands but gives the illusion she does by giggling, noding in the right places....doesn't mean she understands.

When she was unwell suffering from strokes, hypo's, eye surgery I did everything and beyond to look after her. She did not want or need anything...even a turn down service on her bed. But she hates the children being interactive or taking care of dad...jealousy. She wants my dad to work a full time job clock off then start work at home. That's crazy...meanwhile the princess takes it easy and doesn't lift a fingers. She doesn't even cook a balanced meal for him...its so sad that this is what it come to.

Wish my dad would wake up to this......I hate being able to do nothing but watch the demise.

Thank you

 

[Crikey]

oh, so many echoes (right down to the raging jealousy and attention seeking. yuck!)

I was thinking some more about the LPA, and some of the things that we talked about that helped my Pa clarify what he wanted, and it mostly came down to the very blunt question: if you are ever in a situation where you can't make decisions for yourself, who do you trust most to act in YOUR best interests rather than their own? All was initially discussed very much as a "what if" and "it may never come to this, but, just in case, one day" forward planning, as this was before he was prepared to really accept he needed he might need that support sooner rather than later.

(and, framing it so he could make a considered choice also based on who he thought would be most capable of making things happen, if they get complicated and involve lawyers and banks and medics, and do battle with The System.)

 

[Kathphlox]

Hello xyz

I'm really upset reading this.. how on earth can someone unhinged look after someone with developing Alzheimers?

My hubby and I are carers for my dad and it takes a very calm and loving person to make the best of a horrible hard job.. even I lose my temper sometimes when I get to the end of my tether.. thank goodness it normally just last a few seconds, but it's pointless and I know it is, so I take a deep breath and smile, or take off to my den for an hour or so

I remember someone suggested taking a video with your phone when she's in full flow, then you have proof.

I'm sorry to say, he's certainly not safe in her care

 

[Christinec]

Hi,
A thread where I know exactly what you are talking about. Been there, done that and still trying to get my own mental health stabilised after dealing with it.

Not all next of kin have the mental capacity to be a carer and even if they have diagnosed mental health issues in the past CPNs and social workers are as many TPrs know keen to keep the person at home and if there appears to be a carer in the house will try to make that a reason not to intervene. In my opinion when carers have or have had mental health issues this should be treated seriously and be a flag to service providers that the vunerable adult with dementia in that household may need extra protection because the "carer" is mentally unable to care for another person.

Although I have to say the social workers and CPN involved in our situation recognised that the next of kin carer was incapable due to their mental health issues it still took a series of crisis before they took action to protect my Mum. Crikey you must be such a strong character to do what you have done looking after your Dad with this illness and coping with the flack from your Mum. You have done so well. Although I did my best to try and protect Mum I could not have done what you are doing.

Please do keep trying to involve the services until they can see what is really happening. In my experience the facade presented can only be maintained for a limited period and we were fortunate in having the involvement of professionals who monitored the situation through routine visits and eventually did take legal action to keep Mum safe. It was a very rough journey which I would wish on no one.

At least Mum is now consistently well cared for in a residential home. When her consultant visited her there she was assessed her as being mentally healthier and less anxious than she had been for years. This was due I think to the fact that she was no longer shouted at, bullied, humiliated or continually harassed to take part in activities which she had never enjoyed and was certainly too ill to deal with when the alzheimers took hold.

Probably this is not much help to you but wanted you to know others have also faced this too.

Kathyphlox you put it so well
"I'm really upset reading this.. how on earth can someone unhinged look after someone with developing Alzheimers?"

Unfortunately it will happen and is very hard to deal with.

 

[xyz]

oh, so many echoes (right down to the raging jealousy and attention seeking. yuck!)

I was thinking some more about the LPA, and some of the things that we talked about that helped my Pa clarify what he wanted, and it mostly came down to the very blunt question: if you are ever in a situation where you can't make decisions for yourself, who do you trust most to act in YOUR best interests rather than their own? All was initially discussed very much as a "what if" and "it may never come to this, but, just in case, one day" forward planning, as this was before he was prepared to really accept he needed he might need that support sooner rather than later.

(and, framing it so he could make a considered choice also based on who he thought would be most capable of making things happen, if they get complicated and involve lawyers and banks and medics, and do battle with The System.)

Thanks Crikey, I'm going to mention the POA to my dad again. I really don't want my mum having any legal say so if there was a 'in the event off'. I'll break things down for him and hopefully I an encourage him to file a POA. I think he wont know who to name- it will be the children- my brother, sister or me or maybe all three. You make a very good point, it has to be someone who can take on the system and do battle. My brother isn't fully aware of the laws in the U.K. My sister and I could do it but my sister could take a back seat. Up till now its been me trying to help the folks and my siblings haven't chosen to be involved.

Poor thing was getting confused whilst washing up yesterday, he threw the washing up sponge in the bin and got frustrated because he couldn't find it. I can also see his thinking is confused and he cant remember what he has said.

I know he would be happy and healthier away from all this stress.
Thanks

 

[xyz]

Hello xyz

I'm really upset reading this.. how on earth can someone unhinged look after someone with developing Alzheimers?

My hubby and I are carers for my dad and it takes a very calm and loving person to make the best of a horrible hard job.. even I lose my temper sometimes when I get to the end of my tether.. thank goodness it normally just last a few seconds, but it's pointless and I know it is, so I take a deep breath and smile, or take off to my den for an hour or so

I remember someone suggested taking a video with your phone when she's in full flow, then you have proof.

I'm sorry to say, he's certainly not safe in her care

Hi Kathphlox,

This is the question, I keep getting stuck on it. The medical profession think my mum is fine suffering from no mental issues what so ever. I beg to disagree. Some how trying to draw attention on my mums behaviour has meant she has labelled me as the trouble maker. I will never understand the medical profession.

I fully agree with you, my dad is not safe in her care. Thankfully I live with them and able to keep an eye on the antics. My mums goal is that I move out and then she can do what she wants at home. I need to leave but I am concerned about my dad. I don't know what it will take to show the medical profession what my mums behaviour is doing to my dad.

Yes, it takes a lot of patience and understanding caring for someone. I know my dad can test me repeating all the time but what can I do, no point in having a go at him...he cant help it. Thats the one, take a time out for a bit.....I do the same.

Funny you mention taking a video of her on my phone...I feel like I need to have a video on all the time just to prove I'm not making this up and my mum is unstable and no way should she deluded into thinking she is the carer when she cant take care of herself. This again is the CPN's fault encouraging my mum.

Difficult situation.....

Thank you for your reply.

 

[xyz]

Hi,
A thread where I know exactly what you are talking about. Been there, done that and still trying to get my own mental health stabilised after dealing with it.

Not all next of kin have the mental capacity to be a carer and even if they have diagnosed mental health issues in the past CPNs and social workers are as many TPrs know keen to keep the person at home and if there appears to be a carer in the house will try to make that a reason not to intervene. In my opinion when carers have or have had mental health issues this should be treated seriously and be a flag to service providers that the vunerable adult with dementia in that household may need extra protection because the "carer" is mentally unable to care for another person.

Although I have to say the social workers and CPN involved in our situation recognised that the next of kin carer was incapable due to their mental health issues it still took a series of crisis before they took action to protect my Mum. Crikey you must be such a strong character to do what you have done looking after your Dad with this illness and coping with the flack from your Mum. You have done so well. Although I did my best to try and protect Mum I could not have done what you are doing.

Please do keep trying to involve the services until they can see what is really happening. In my experience the facade presented can only be maintained for a limited period and we were fortunate in having the involvement of professionals who monitored the situation through routine visits and eventually did take legal action to keep Mum safe. It was a very rough journey which I would wish on no one.

At least Mum is now consistently well cared for in a residential home. When her consultant visited her there she was assessed her as being mentally healthier and less anxious than she had been for years. This was due I think to the fact that she was no longer shouted at, bullied, humiliated or continually harassed to take part in activities which she had never enjoyed and was certainly too ill to deal with when the alzheimers took hold.

Probably this is not much help to you but wanted you to know others have also faced this too.

Kathyphlox you put it so well
"I'm really upset reading this.. how on earth can someone unhinged look after someone with developing Alzheimers?"

Unfortunately it will happen and is very hard to deal with.

Hi Christinec,

Its helpful to know other people are/have gone through this too. I'm grateful to everyone who has been able to share their experiences with me.

Exactly what I think too, not all next of kin can have the capacity of being a carer. However I'm powerless the Consultants, Dr's, CPN's think there is nothing wrong with my mum. I have been listing her behavioural changes with examples and still the CPN or DR wont listen to me. I even told the consultants my mum was driving on the wrong side of the road. He wasn't interested and told me to inform the dvla. I told the dvla in Nov disclosing her insulin dependant diabetes and the dvla sent more forms, which my mum has recently completed and returned....to herself! Instead of sending the forms to the dvla she addressed the forms to herself with insufficient postage then made my dad run around to collect the letter and pay the postage. This is only one e.g. of her memory issues.

Annoys me that my mum cant look after my dad. He looks after her.

I've given up with the medical profession they don't know the square root of anything and made things worse. My dad isn't listened to any more, my mum is and I am the cause of everything. Plus the CPN does not want me attending my dads memory appt in May, its meant to be my mum not me. So what if she is the wife. They should ask does she understand what alzhiemers is- lets adress the basics. I cant see how they can stop me if my dad says he want me there. I do know they have changed their attitude towards my dad after whatever lies my mum has told them. She fabricates a lot of things.

I'm very glad to hear your mum is happier and in a healthier environment. Sound to me like she is doing much better than before! Good to know the CPN monitored the situation and intervened. To think what your mum had to endure before, breaks my heart.

Hope your mum continues to become stronger.

Thank you.

 

[jan.s]

I have just read the thread ad it has made me so sad and angry. Sometimes the agencies can be so thick, they can't see what is so obvious. I have tried to think of what I would do in your situation.
I can see why you have lost all confidence in the medical profession, but could you talk to your own GP and express the stress this is causing you.
I still think your best bet is to persuade Dad to go and stay with your sister for a "short break", maybe to "help" your sister in some way. If that were to happen, he may start to open up and talk about things.
I like the idea of videoing Mum at her antics.
Sorry I can't help, but just wanted to say how I feel for you and Dad.
Jan

 

[xyz]

I have just read the thread ad it has made me so sad and angry. Sometimes the agencies can be so thick, they can't see what is so obvious. I have tried to think of what I would do in your situation.
I can see why you have lost all confidence in the medical profession, but could you talk to your own GP and express the stress this is causing you.
I still think your best bet is to persuade Dad to go and stay with your sister for a "short break", maybe to "help" your sister in some way. If that were to happen, he may start to open up and talk about things.
I like the idea of videoing Mum at her antics.
Sorry I can't help, but just wanted to say how I feel for you and Dad.
Jan

Hi Jan,

Thanks for your thoughts and supportive comments. Absolutely, thick/dense, foolish are the words and that's me holding back. Amazes me how they are not interested in anything I have to say.

I have as you suggested seen my Dr on a number of occasions dating back 5 years about my mum antics and then both and how overwhelmed, stressed I am resulting in anxiety and no sleep. I don't know if it has been documented as its usually a 'there, there' response.

I am concerned if the medical professionals (Shrink to CPN) that wrote a letter to my mum documenting she thinks I am the cause of all the tension has been sent to my Dr, if so then the Dr will also side with her too. They are pushed for time so I have to race through my points and they don't take it all in. We all see the same Dr's so imagine they will be different with me. Once the DR told my mum 'we have children so they can look after us'.

Spoke to my dad about the POA and he said book an appt. I will work on him and see if he will visit my sister, I don't think he will because my mum will adopt an attitude as she hates my sister and thinks my sister is putting me up to my 'behaviour'. Always someone else's fault, except zero responsibility, silly woman. So, my dad wont do anything to rock the boat with my mum. He can't see he is loosing his children all for my mum.

Thanks