Mother in Law recently diagnosed

[MrsKG13]

My mother in law has recently been diagnosed with vascular dementia and alzheimers. She has been living alone in an extra care facility for 18 months now after we noticed a deterioration in her memory. Her home is basically a block of flats with on site staff and the residents are a mixture of able bodied and not so able people. As she has tablet controlled diabetes we have on site care staff visiting her 3 times a day to administer meds and I or my husband visit every day for an hour or so. We are the only family she has other than a sister who lives 300 miles away and visits a couple of times a year. She has been my mother in law for 17 years and always been a doting grandmother and really good friend.

I make and take her to every appointment , do her shopping, bank visits, collect medication etc and have done for around a year when it became gradually obvious she was incapable of managing it herself. My dealing with everything has been a gradual process and only as a last resort when it became unsafe or unmanageable for her to do herself. My husband works very long hours and cannot visit as often as I can so we try and make sure his visits are made up of socialising with her rather than shopping/fixing things etc

We have only received a diagnosis in the last few weeks but she is really struggling to accept it as she feels she is absolutely fine. Over the last year or so she has become steadily more angry with me (but not my husband) as she feels, understandably, that I am controlling her life. She is convinced that I have talked the doctors into her diagnosis by telling tales which aren't true about her and that I am trying to get rid of her and have her "carted off to a nut house" as she puts it. She has told the care staff and her sister the same thing and our relationship has almost completely broken down now with her getting angry with me pretty much every day for taking over.

I am at a loss how to deal with this as she would literally go without rather than ask me for help with anything. This has led to things like her attempting to walk somewhere she is unfamiliar with rather than ask me for helping figuring out a route, going without bread or milk as she didn't want o tell me it had run out etc. She even fell when we were away for a week but didn't tell us in case I had her sent off to a care home.

Sorry for the long post but any advice on how to try and rebuild our relationship would be greatly appreciated.

 

[marionq]

My mother in law has recently been diagnosed with vascular dementia and alzheimers. She has been living alone in an extra care facility for 18 months now after we noticed a deterioration in her memory. Her home is basically a block of flats with on site staff and the residents are a mixture of able bodied and not so able people. As she has tablet controlled diabetes we have on site care staff visiting her 3 times a day to administer meds and I or my husband visit every day for an hour or so. We are the only family she has other than a sister who lives 300 miles away and visits a couple of times a year. She has been my mother in law for 17 years and always been a doting grandmother and really good friend.

I make and take her to every appointment , do her shopping, bank visits, collect medication etc and have done for around a year when it became gradually obvious she was incapable of managing it herself. My dealing with everything has been a gradual process and only as a last resort when it became unsafe or unmanageable for her to do herself. My husband works very long hours and cannot visit as often as I can so we try and make sure his visits are made up of socialising with her rather than shopping/fixing things etc

We have only received a diagnosis in the last few weeks but she is really struggling to accept it as she feels she is absolutely fine. Over the last year or so she has become steadily more angry with me (but not my husband) as she feels, understandably, that I am controlling her life. She is convinced that I have talked the doctors into her diagnosis by telling tales which aren't true about her and that I am trying to get rid of her and have her "carted off to a nut house" as she puts it. She has told the care staff and her sister the same thing and our relationship has almost completely broken down now with her getting angry with me pretty much every day for taking over.

I am at a loss how to deal with this as she would literally go without rather than ask me for help with anything. This has led to things like her attempting to walk somewhere she is unfamiliar with rather than ask me for helping figuring out a route, going without bread or milk as she didn't want o tell me it had run out etc. She even fell when we were away for a week but didn't tell us in case I had her sent off to a care home.

Sorry for the long post but any advice on how to try and rebuild our relationship would be greatly appreciated.

I’m no expert in MILs as I have never had one. Died young. However I would suggest that you step Back for a while for this antipathy to die down. Carers would need to be brought in to replace you and to reinforce that when she needs you and wants you there you will come back.

 

[MrsKG13]

Thank you for the reply, I am leaning towards the same conclusion myself. I worry my involvement is doing more harm than good now so I guess I need to speak to social services again and see if the care staff can increase their provision to replace what I currently do. She fought against the staff giving her medication and reminding her to eat but has gradually accepted it so she may find it easier accepting more help from them.

 

[karaokePete]

Agitation can be caused by the person thinking that they are being made useless by having everything done for them. If you could try to involve her in as much as possible to give her 'co-ownership', as it were, it may give her back her feeling of independence, help her self esteem and remove some of the agitation. In other words, help her do things rather than just do them for her - even if her input is minimal.
We often forget that the person is still there beneath the symptoms and we need to keep their feelings in mind.

 

[MrsKG13]

That's what we currently do, for example, we order her evening ready meals for her but she chooses them each week, I take her to the bank rather than her going on her own (she lost several cards this way due to not remembering the pin), she decides what day/time she wants her appointments to be and I just take her there. Unfortunately this doesn't seem to be enough for her to feel in control.

 

[karaokePete]

Sorry I couldn't be of help.

 

[MrsKG13]

Sorry I couldn't be of help.

Not at all, if anything your suggestion confirms we are doing it the right way really thank you.

 

[canary]

I think that deep down she knows that Something Is Not Right, but she is unable to see that the Something is, in fact, her. So she is blaming you. She sees that you are doing things for her and telling her what to do, but fails to realise that this is because she is unable to do things herself. She knows that she is losing control, but not why, so she is afraid; there is a very fine line between fear and anger.

There is a lot of staff around where she is living, so yes, step back a bit for a while. I dont know the set up where you are - I expect you will have to arrange things with staff to cover things that you are not doing.

 

[karaokePete]

By the way @MrsKG13, I just remembered something about the time my wife got her diagnosis. Like your mother, my wife blamed her diagnosis on what I was telling the Consultant. I dealt with this by requesting a copy of the Consultant's report which outlined the reasons for the diagnosis and showed that I wasn't to blame.

As a final thought, would a heart to heart chat with your mother help - clear the air and set parameters sort of thing? This might give her a sense of control - just a thought.

I hope things improve for you all.

 

[MrsKG13]

By the way @MrsKG13, I just remembered something about the time my wife got her diagnosis. Like your mother, my wife blamed her diagnosis on what I was telling the Consultant. I dealt with this by requesting a copy of the Consultant's report which outlined the reasons for the diagnosis and showed that I wasn't to blame.

As a final thought, would a heart to heart chat with your mother help - clear the air and set parameters sort of thing? This might give her a sense of control - just a thought.

I hope things improve for you all.

That’s a really good idea, getting a copy of the consultant report thank you very much I’m sure seeing it in black and white will help.

I have spoken to social services to try and get more help from staff to replace what I do and that should also help. Thanks again

 

[Ann Mac]

My mother in law has recently been diagnosed with vascular dementia and alzheimers. She has been living alone in an extra care facility for 18 months now after we noticed a deterioration in her memory. Her home is basically a block of flats with on site staff and the residents are a mixture of able bodied and not so able people. As she has tablet controlled diabetes we have on site care staff visiting her 3 times a day to administer meds and I or my husband visit every day for an hour or so. We are the only family she has other than a sister who lives 300 miles away and visits a couple of times a year. She has been my mother in law for 17 years and always been a doting grandmother and really good friend.

I make and take her to every appointment , do her shopping, bank visits, collect medication etc and have done for around a year when it became gradually obvious she was incapable of managing it herself. My dealing with everything has been a gradual process and only as a last resort when it became unsafe or unmanageable for her to do herself. My husband works very long hours and cannot visit as often as I can so we try and make sure his visits are made up of socialising with her rather than shopping/fixing things etc

We have only received a diagnosis in the last few weeks but she is really struggling to accept it as she feels she is absolutely fine. Over the last year or so she has become steadily more angry with me (but not my husband) as she feels, understandably, that I am controlling her life. She is convinced that I have talked the doctors into her diagnosis by telling tales which aren't true about her and that I am trying to get rid of her and have her "carted off to a nut house" as she puts it. She has told the care staff and her sister the same thing and our relationship has almost completely broken down now with her getting angry with me pretty much every day for taking over.

I am at a loss how to deal with this as she would literally go without rather than ask me for help with anything. This has led to things like her attempting to walk somewhere she is unfamiliar with rather than ask me for helping figuring out a route, going without bread or milk as she didn't want o tell me it had run out etc. She even fell when we were away for a week but didn't tell us in case I had her sent off to a care home.

Sorry for the long post but any advice on how to try and rebuild our relationship would be greatly appreciated.

Bless you - been almost exactly in your position and I know how hard it is. Mil was in her own home, OH working long shifts, so as her problems and ability to cope worsened, I gradually stepped in to deal with all you are dealing with. We had always been really good friends, and she and I used to have a fab relationship. Mil denied having dementia, even after she was told by the consultant, and that eventually became her telling everyone 'Ann has done this. She has lied to everyone about me, so they think I am mad. She want's me locked up and away from my son and grandchildren'. Her hostess mode, particularly in the early stages was fantastic, and I know that a lot of her neighbours and friends believed her - that really hurt, when I was knocking myself out to help. She absolutely refused to have more than one care visit a day, refused to let the carers hep when they arrived, and would often refuse them entry. Her social worker had arranged the carers - not me, or my OH - but I got the blame for that too, and took many an abusive phone call where she screamed at me and demanded that I 'stop those nosy cows' going to her house, because she 'knew' that I was the one who had set it up. Eventually, she got to the point where she was wandering at night, looking for her long dead hsuband - despite the relationship between us having been badly damaged, we moved her in with us, for her own safety.

I wish, with all my heart, that I had been able to do what you have ben advised to do and step back for a long period of time whilst she was still in her own home, but with her refusing (and the social worker insisting that she had the right to refuse) more care input, it was impossible. The accusations of me 'keeping her away' from her son and grandchildren morphed into her being convinced that her son was her husband, and I was the 'other woman', and eventually, after nearly 3 years of very nasty verbal abuse, the threatened violence actually became physical, despite us trying everything to try and calm her delusion, and we had to concede that we just couldn't care for her 24/7 any more.

I've often wondered if I had been able to step back at the point when her resentment of me started to take hold, if it would have made a difference to her later presentation, and us being able to keep her here living with us? Common sense tells me probably not, especially as she still regularly attacks carers at the home - but still, I wonder, and wish that I had tried backing off for a long while.

 

[MrsKG13]

Bless you - been almost exactly in your position and I know how hard it is. Mil was in her own home, OH working long shifts, so as her problems and ability to cope worsened, I gradually stepped in to deal with all you are dealing with. We had always been really good friends, and she and I used to have a fab relationship. Mil denied having dementia, even after she was told by the consultant, and that eventually became her telling everyone 'Ann has done this. She has lied to everyone about me, so they think I am mad. She want's me locked up and away from my son and grandchildren'. Her hostess mode, particularly in the early stages was fantastic, and I know that a lot of her neighbours and friends believed her - that really hurt, when I was knocking myself out to help. She absolutely refused to have more than one care visit a day, refused to let the carers hep when they arrived, and would often refuse them entry. Her social worker had arranged the carers - not me, or my OH - but I got the blame for that too, and took many an abusive phone call where she screamed at me and demanded that I 'stop those nosy cows' going to her house, because she 'knew' that I was the one who had set it up. Eventually, she got to the point where she was wandering at night, looking for her long dead hsuband - despite the relationship between us having been badly damaged, we moved her in with us, for her own safety.

I wish, with all my heart, that I had been able to do what you have ben advised to do and step back for a long period of time whilst she was still in her own home, but with her refusing (and the social worker insisting that she had the right to refuse) more care input, it was impossible. The accusations of me 'keeping her away' from her son and grandchildren morphed into her being convinced that her son was her husband, and I was the 'other woman', and eventually, after nearly 3 years of very nasty verbal abuse, the threatened violence actually became physical, despite us trying everything to try and calm her delusion, and we had to concede that we just couldn't care for her 24/7 any more.

I've often wondered if I had been able to step back at the point when her resentment of me started to take hold, if it would have made a difference to her later presentation, and us being able to keep her here living with us? Common sense tells me probably not, especially as she still regularly attacks carers at the home - but still, I wonder, and wish that I had tried backing off for a long while.

Oh wow! I’m torn between feeling incredibly sorry that anyone else has had to go through this and yet feeling very comforted that it isn’t just me <3

Thank you for sharing that it is exactly the same for me, even those rare things I don’t get involved in become my fault too and I am struggling with feeling hurt by it despite knowing in my heart that this is not her, it’s the illness.

I made the first steps yesterday, told my husband and her sister I felt my involvement was now causing more harm than good and they have been completely supportive. I know the carers are fantastic but won’t monitor her eating/health as closely as I have been and she is very good at being hostess so hides problems well. I’m just hoping we don’t need to have a crisis before those services are increased, not sure I could survive the guilt of thinking I’ve abandoned her to an inefficient system and therefore caused her harm Such a minefield and heartbreaking for everyone involved x

 

[Ann Mac]

It really does help, I've found, to know that others have experienced what you are going through - somehow, it lessens the feeling of isolation, and support of that kind from the people here on TP has been invaluable to me.

It's a horrible juggling act that carers have to manage. At the same time as dealing with what is happening 'today', we also have to be aware of what may happen in the future, and try and put in place measures that will give our loved ones the most contented and safest environment and care that we can as this illness progresses. If you do step back now, you are right, the chances are that life will not be as easy for your Mum in law - on the other hand, it might make all the difference in a few weeks/months when she needs more support and your actions now might be the thing that ensures she lets you give that support. But it is an awful situation and choice, and one that is heartbreaking to deal with.

So called support services often tell carers that they can't step in and give more help until there is a 'crisis' - its wrong and infuriating, but its something that so many of us have been told. We knew that Mil was being ripped off by cold callers and possibly unscrupulous neighbours - but her social worker insisted that she still had the 'capacity and right to make decisions, even if they are bad decisions'. I've never heard anything so stupid in my life, but that attitude governed what we did when Mil started wandering and - in our eyes - putting herself at real risk of harm. Wary of the SW claiming that as long as Mil was getting home safely, there was 'no crisis', we didn't even inform the SW in advance, just moved Mil in with us - against Mil's wishes. With hindsight, by doing this, we probably played into the care services hands - by us providing 24/7 care, we took full responsibility and the care agencies were able to step back and leave it pretty much up to us to then have to fight for a new support package, which with Mil living with us, was initially at least, more cost and time effective for them.

I am so glad that your OH and his sister are so supportive - it makes a big difference when family help rather than hinder. I would let the support agencies know that you are stepping back and why, and state that as a vulnerable adult, they have a duty of care to see that your Mil gets the necessary support - it may not make them increase care now, but you are laying the foundation for pushing for more support in the future.

Good luck and take care x