I'm reaching out in case anyone else going through similar problem. Mother 85yrs - always been a bit tricky/feisty; now doesn't often remember; has mood swings; loses things; hides things in odd places then thinks they are being taken; fights with husband (our father) 92 yrs. who is not emotionally capable to react appropriately - he tries but never succeeds and she complains about him constantly. They are a bad match and more so due to current situation. I am taking calls from my mother daily - mostly confusing on various levels depending on her mood but always making it quite clear that she is control and "not losing her marbles" - her words not mine. She has not been away from their home in months. Says she walks but doubt she does and struggles with her feet in any case. No social interaction with remaining friends - we do try to encourage but falls on deaf ears. Doesn't do the internet. Sleeps in front of TV; doesn’t read. No hobbies. Only contact are calls from our small family (my brother, me and our respective adult children). What can do we do to improve this situation? She is adamant no help required. My father does his best, but she pushes him away and tells him not to interfere. My brother and I can't arrange outside help now due to virus but would have a struggle with her if we did. Cannot visit properly due to virus (although my brother can check from across the garden; I am an hour away). Their quality of life is nil. Both childlike in comprehension of everything. Both need coaxing/nurture in different forms. In the midst of on-going tests for our mother (currently on hold due to virus) to fully diagnose dementia. But her behaviour (too much to write here) more than explains what is going on. They are self-sufficient to a point but only ready meals I've arranged but no cleaning help during virus. They are not dying. They do not need medical help. My father's brain is good but born to an era that does not cook or become "domestic"! He tries but gets so frustrated by our mother's reaction to his help, so they shout! What can be done to improve their situation? Huge apologies for sending such a garbled and long winded message but really struggling to know what to do for the best when our mother is so complicated and refuses to acknowledge anything wrong but then spends most of each day telling us how awful she feels; or has lost something; someone has taken it; our father is a moron; "I'm having a bad day" etc ... been like this for years but now it strongly appears there is finally a reason for it. Please offer any suggestions for this interim stage. They would be very gratefully received. Honestly not sure if anything can help but are her children we must try. Thank you very much indeed, if only to let me off load!
Parental concerns
- Thread starter Buckeroo
- Start date
We have had an initial memory test done in her home. Enough evidence for medics to arrange a head scan and further more in-depth tests required. All currently on hold due to Corona virus situation, understandably. But our mother's condition worsening - don't know if its her lack of social interaction as her brain is not being stimulated at all (hasn't been for years sadly despite support from her family) or whether potential dementia issues starting to take hold. Some of her moods, way of thinking is not normal or rational so we have to conclude that something is slowly happening to her brain. Just have not a clue how best to help or where to get help. Thank you for your response
Personally, I’d contact the GP & talk to them about the deterioration. I’m wondering if there may be an infection?
Thank you very much indeed. She has had UTI's in the past but behaviour has then been constantly irrational and she's felt poorly. Currently she swings in and out of moods and constantly forgets - doesn't feel ill, just "down". Online consultation with consultant has confirmed Alzheimers with Vascular Dementia combined - seen a decline in her memory for last week so will check another UTI as could be a constituting factor. Thank you again for your response.
Hello @Buckaroo. This sounds so very like how my parents were 6 or 7 years ago. We never did get mum (I used to describe here as complicated and unpredictable but tricky/feisty sums it up) to have any tests, as mental health was a taboo subject and mum would never had admitted that she had a problem - it was all Dad's fault, of course. I would often get several calls in a day from my father, who was very distressed by mum's behaviour. I tried getting help in but they weren't allowed to stay! Mum was finally diagnosed (vascular dementia, which is now advanced) after a brain scan following a stroke 3 years ago, after I had moved them to be near me and Dad had unfortunately died. I suspect your parents are very stressed being in the house all day together, which will be increasing the agitation. Do they have a garden or space they can use to be apart? My Dad had a little study he would retreat to and mum often went for a lie down (sometimes an afternoon nap would really improve her mood).
I am pleased to see that you at least have a diagnosis now and can hopefully get some advice, support and possibly medication from the GP/consultant. Anyway, I thought I would post to say that you are not alone and, if there is anything you would like to ask someone with a similar experience, fire away. I have been reticent about posting my experiences with mum's dementia (I looked after her myself for 2 years after Dad died) due to a misplaced feeling of betrayal but your post has encouraged me to put that aside.
I am pleased to see that you at least have a diagnosis now and can hopefully get some advice, support and possibly medication from the GP/consultant. Anyway, I thought I would post to say that you are not alone and, if there is anything you would like to ask someone with a similar experience, fire away. I have been reticent about posting my experiences with mum's dementia (I looked after her myself for 2 years after Dad died) due to a misplaced feeling of betrayal but your post has encouraged me to put that aside.
Hi Lemonbalm
I am so sorry you have been through all this too. Thank you for taking the time to respond. It helps hugely and is appreciated. We are not being disloyal - to sound off helps us face another day and they then benefit! Of course I'm really sad my mother is facing such a struggle and I'll do all I can to make that as painless and less scary as possible but trying to convince her she needs help and that we've on her side only seems to make the suggestion worse and she digs her heels in even more! Very tricky/feisty! Situation getting worse here sadly, and quicker than expected. Alzheimers and Vascula dementia (mixed) diagnosed. Further tests to confirm and my mother has been told by medical team. In denial and still thinks there is nothing wrong with her except old age forgetfulness.. Getting more and more difficult to handle - frankly she can be so testing, argumentative and thoroughly horrible one minute, even tears (that dry up as quickly as they have appeared) then childlike and almost her self again another. When I see her call on my mobile my heart sinks not knowing which "mother" I will get when I answer it. Medication is being hidden by her (she thinks its being taken). Very stressed until we find it - still then she is adamant its not her hiding it and "why can't we believe her"? Important for her to take the correct medication at the correct time but she remains fiercely independent - won't accept help so currently medication all over the place and we only have her word for it that its been taken until I check weekly. Relationship with my father so testing that he refuses to help by giving pills to her in correct quantity daily. And she would refuse from him anyway as she resents his/any "interference" . She has always had health issues, either real or not, but we hear about them daily anyway. She's been to our local surgery many times in the last week alone (not comprehending the virus situation and they call to tell me to stop her visits). She goes to ask for antibiotics for what she thinks is an ear infection. She has tinitus but won't accept it ....... I could go on! Every single day there is an issue now - full of confusion, strong opinions and made-up stories to make sense of what she's forgotten. I'm sorting food for them, as despite what my mother thinks and says, there is no cooking happening. Forgets to use the freezer, them forgets to put in oven - when I ask in conversation what they've eaten she genuinely cannot remember. Huge demand on me and my brother. I live an away and every 4-5 days I'm traveling to them 1 hr away with "meals on wheels" - not just providing them but also staying to ensure they're eaten. I work full-time as a necessity (I'm not career driven and would retire if financially viable) so not an option to move in with them which would erase all the issues for them (and create so many more, selfishly, for me). And I have no experience in coping with dementia correctly - and it will get worse, I know that. So how to introduce medication and food help daily to someone who is absolutely adamant she doesn't need it is a real head scratcher for us. She won't have it and is shocked we even suggest it so could become an all consuming subject if we let it!. Our mother would go up to orbit if someone appeared to help without her consent! Its very late now and I've rabbled on - so much more I could get off my chest but time to sleep! Selfishly and very honestly I'm hating every minute currently. There is no pleasure seeing them - they are both so negative (and on my good days I fully appreciate they have a great deal to be negative about but they still won't try to make it more bearable for themselves). I have to work full-time so cannot live with them but I do as much as I can physically every week. I will sort help somehow (as that's what good daughter's do) but I've run out of ideas of how to make it a convincing resolution to a most reluctant patient. Any tips most gratefully received!
@Buckeroo - my mum was exactly the same.
The problem is that your mum has got anosognosia - the inability to understand that she has something wrong with her. The part of the brain that deals with self-awareness is damaged and she now lacks the insight to understand that she has changed. In her mind she is exactly the same as she has always been and nothing that you do or say can ever convince her otherwise. It is not denial, when people dont want to face up to difficult truths - her brain just cannot comprehend the possibility. Its a very common symptom of dementia, and oh so difficult to deal with.
As you have discovered, logic and reasoning are not your friends now. Trying to use reason to persuade her to do something will just make her angry, because she knows that there is nothing wrong with her so you must be lying. BTW, the made up stories are called confabulations and she is not consciously doing it. It is the product of a damaged brain that is producing false memories to fill in the gaps and (as you so rightly say) make sense of everything - except, of course that its not actually true, but you wont persuade her otherwise.
The answer is "love lies" aka "therapeutic untruths". You will not be able to bring her back into the real world, so you will have to enter her reality. She is unable to understand the reality of her situation, so you must instead come up with a reason that will make sense to her, even if its not the absolute truth.
Have you come across Compassionate Communication? It may give you some pointers
forum.alzheimers.org.uk
The problem is that your mum has got anosognosia - the inability to understand that she has something wrong with her. The part of the brain that deals with self-awareness is damaged and she now lacks the insight to understand that she has changed. In her mind she is exactly the same as she has always been and nothing that you do or say can ever convince her otherwise. It is not denial, when people dont want to face up to difficult truths - her brain just cannot comprehend the possibility. Its a very common symptom of dementia, and oh so difficult to deal with.
As you have discovered, logic and reasoning are not your friends now. Trying to use reason to persuade her to do something will just make her angry, because she knows that there is nothing wrong with her so you must be lying. BTW, the made up stories are called confabulations and she is not consciously doing it. It is the product of a damaged brain that is producing false memories to fill in the gaps and (as you so rightly say) make sense of everything - except, of course that its not actually true, but you wont persuade her otherwise.
The answer is "love lies" aka "therapeutic untruths". You will not be able to bring her back into the real world, so you will have to enter her reality. She is unable to understand the reality of her situation, so you must instead come up with a reason that will make sense to her, even if its not the absolute truth.
Have you come across Compassionate Communication? It may give you some pointers
Compassionate Communication with the Memory Impaired
The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...
forum.alzheimers.org.uk
Hello @ Buckaroo. I'm glad to hear from you and pleased that you have a place to get things off your chest where people understand. Hopefully we can provide you with tips and ideas as you go along. I remember all those hours spent on the M25 in frantic dashes sorting out the many and varied problems mum and dad were having, so have every sympathy for you.
It sounds as though you are doing as much as you can do for now. Does your mum complain about having to do housework at all? You may be able to sneak some help in that way at some point in the future, which would be good all round. I found a great agency who did anything from housework and a bit of shopping to care .... but mum got rid of them after a couple of visits. You might have more luck.
I am really hoping that, as your mum's dementia progresses, she becomes less aggressive and easier to deal with. Being stuck indoors most of the time with your Dad won't be helping but that won't last forever. My mum's doctor told me "not to worry, just you carry on giving her the support she needs and she'll become a sweetly confused old lady, like my mum". HAHAHAHAHAHAH! To be fair, my mum is incredibly and heart-breakingly sweet sometimes now. It is terribly stressful not knowing which mum you're going to get. Keep posting, even if it's just for a good old rant. Thinking of you.
It sounds as though you are doing as much as you can do for now. Does your mum complain about having to do housework at all? You may be able to sneak some help in that way at some point in the future, which would be good all round. I found a great agency who did anything from housework and a bit of shopping to care .... but mum got rid of them after a couple of visits. You might have more luck.
I am really hoping that, as your mum's dementia progresses, she becomes less aggressive and easier to deal with. Being stuck indoors most of the time with your Dad won't be helping but that won't last forever. My mum's doctor told me "not to worry, just you carry on giving her the support she needs and she'll become a sweetly confused old lady, like my mum". HAHAHAHAHAHAH! To be fair, my mum is incredibly and heart-breakingly sweet sometimes now. It is terribly stressful not knowing which mum you're going to get. Keep posting, even if it's just for a good old rant. Thinking of you.
You are all so helpful. And how sad that we all get comfort from knowing we are not the only ones going through this hell. M y parents do not get on - never have. My father is 92, old, dealing with his own issues of old age but of sound mind. My mother has dementia as stated and is at him all day - he escapes to the shed as he is not equipped to manage her moods and agression. She then calls me either in tears or condemning his as the most horrendous husband and she should have left him years ago!
I have only just returned home to work after spending 6 days with them following my mother taking more medication in error than she should have done resulting in a day spent in A&E to check she hadn't poisoned herself. Wasn't her fault, nothing to do with her she says - don't know why I now need a nurse to administer my medication daily when I'm perfectly okay!! Any suggestions on how I stop a toxic environment when I'm not Abel to be there 24/7. Limited help as they both kicks off if I try to arrange any more and they say adamantly they don't need it.
This dementia disease is so horrible and I send out my heartfelt wishes to everyone who is dealing with this as I am with my brother. Two elderly adults in one house, fighting with different medical needs. Nightmare!
Thank you for reading - I feel a little better just typing this otherwise I'm silent shouting!
I have only just returned home to work after spending 6 days with them following my mother taking more medication in error than she should have done resulting in a day spent in A&E to check she hadn't poisoned herself. Wasn't her fault, nothing to do with her she says - don't know why I now need a nurse to administer my medication daily when I'm perfectly okay!! Any suggestions on how I stop a toxic environment when I'm not Abel to be there 24/7. Limited help as they both kicks off if I try to arrange any more and they say adamantly they don't need it.
This dementia disease is so horrible and I send out my heartfelt wishes to everyone who is dealing with this as I am with my brother. Two elderly adults in one house, fighting with different medical needs. Nightmare!
Thank you for reading - I feel a little better just typing this otherwise I'm silent shouting!
Difficult. Your mum probably has anosognosia, but your dad is deep in denial.
Im afraid that all the while your dad refuses more help there is nothing you can do. I hope that he listens to common sense and agrees to more help, but if he doesnt then eventually there will be a crisis. This is horrible to watch (it took a crisis for my mum too), but there is little you can do till the crisis arrives and you have to pick up the pieces. This will probably be the trigger for your mum to move into a care home, so I would start researching about care homes in your area, so that you can act quickly once necessary.
You have two problems @Buckeroo . One is the dementia (which you can't fix) and the other is your parents' relationship (which you can't fix). It is frustrating, distressing and exhausting. Our parents come from an age where mental health was never discussed and asking for, or accepting, help was seen as weakness. They are a stubborn breed. You are doing all you can for now. Something will change, which will hopefully make a positive difference, although it may be a good thing disguised as a bad one. Is there any chance at all that your mum might accept a short break at some point (ie respite very heavily disguised) to "get away from your Dad" and give everyone a bit of breathing space?
Now there's a thought! If you're self-funding, you could call round some homes and see if any would suit and have have space and would accept someone nowish. Sounds like it may give the GP surgery a break as well...
I feel your pain about parents who never really got on, even before dementia. My parents are both strong personalities and when my mother got mixed dementia, although my father looked after her for years, he hated doing so and they argued continually. This was nothing new for them, but by the time dementia arrived Mummy had no idea when to back off. As we were initially self funding, we arranged for Mummy to go to a care home during the day, for two days a week (like daycare, we were told she wasnt eligible for council provided daycare) and then she transferred to live there permanently. A big change, but one that both my parents benefitted from. Mummy was not initially keen, but once she got to know the staff, she liked the CH routines and the fact that less was being expected of her. Although when she wnet into the home she still had some independence, I think this helped her to form bonds with the staff and get involved in activities. Sadly, at the end of the day, it sometimes comes down to what a person (and indeed those caring for them) NEED rather than WANT. We all want the best for our loved ones, but sometimes this tends to be the least-worst.
Oh gosh...reading your post makes me feel physically anxious as this is where we were for the whole of last year...and I totally feel your stress, frustration, compassion and all of the other feelings that bash through your head daily. I have nothing to offer that hasnt been offered here already, but I can say that this journey is made easier (well it was for me) knowing you're not alone, you're not going silently crackers...you are dealing with the most horrible situation by doing your best with the resources and information you have. Keep reaching out: here, to their GP, to social services, ask age uk for help.....just keep going, things will change, it may be that you hit a crisis which changes everything, it may be that you hit on the right combination of help and advice and that will move things on..but hang in there, you are doing your best. Be kind to yourself...and know you have somewhere here to turn to when you need it. Much love x
You are all so helpful and kind. Truly, in just a few hours writing on here today I no longer feel I'm tearing my hair out. I am only trying to do my best, to give my parents (especially mother with dementia) a better quality of life but worse than pushing water up hill. I agree that the time will come (and sooner than perhaps my brother and I currently appreciate) when we will have to deliver what is "needed" rather than what is "wanted". Very sound advice and I'm grateful for it.
I do not have the day-to-day care (yet) and I hand all of you who do have this responsibility the greatest medal. But the stress of managing dementia fall-out daily via telephone, never knowing when seeing the first call of the day (usually early) which "mother" I am getting; or what she is going to be moaning about; hurting of; complaining of - is taking its toil. I also visit every weekend. The pressure is still all consuming and suffocates everything else. My concentration at work is hampered and I'm losing sight of the wonderful good things in my life - this horrible illness and its fall-out always in my head.
So I marvel at how all of you caring without help or time-out manage to stay sounding so positive and upbeat. You are doing a sterling job, regardless of the reaction from a loved one that hasn't a clue how luck they are to have such are.
Thank you'll for helping me. I will sleep slightly easier tonight.
I do not have the day-to-day care (yet) and I hand all of you who do have this responsibility the greatest medal. But the stress of managing dementia fall-out daily via telephone, never knowing when seeing the first call of the day (usually early) which "mother" I am getting; or what she is going to be moaning about; hurting of; complaining of - is taking its toil. I also visit every weekend. The pressure is still all consuming and suffocates everything else. My concentration at work is hampered and I'm losing sight of the wonderful good things in my life - this horrible illness and its fall-out always in my head.
So I marvel at how all of you caring without help or time-out manage to stay sounding so positive and upbeat. You are doing a sterling job, regardless of the reaction from a loved one that hasn't a clue how luck they are to have such are.
Thank you'll for helping me. I will sleep slightly easier tonight.
