Living with my mum who has dementia
- Thread starter Lalafatma
- Start date
Hello @Lalafatma. Welcome to Dementia Talking Point.
There are many on the forum who are living with and caring for parents with dementia and I hope they will soon be on line to share their experiences.
It`s good you have support from an adviser but even better to share with those in similar situations.
There are many on the forum who are living with and caring for parents with dementia and I hope they will soon be on line to share their experiences.
It`s good you have support from an adviser but even better to share with those in similar situations.
Hello
Yes I am in the same situation. Mum (frail 88yo) refuses to go back to the Memory ClInic where MCI was diagnosed in 2015. Her history of heart problems and worsening memory means we have slipped into Dementia. The GP agrees but we have no formal diagnosis. In the end what does that matter when the condition presents to me each day in ways I need to deal with.
Gave up my limited part time work in March In a supermarket as the threat of bringing Coronavirus home with me was just to great. Pity as two nights a week was all my caring role would permit, but the development of the Dementia would have ended it sometime in the relatively near future I am sure. Loss of the Care Group I attended on my own was another support mechanism gone at the same time. Attending on my own as my mum insists there is nothing wrong with her. My siblings have helped me go into social isolation with my mum, helping out with gaps left by internet shopping. We Skype a few times a week but mum still believes they visit regularly. I am at times confused by her with being my dad or grandad, mum talking as if I am her husband (dead over 30 years ago), or her dad (died early 1960s).
What more can I say? Love my mum to bits, would do anything I can for her, have learnt the new normal in our house, how to distract, stopped feeling guilty about telling love lies, have got the LPAs in place and registered. Sharing a house with a loved one but at rare moments feeling desperately lonely. Accepting I am now running the life of a loved one who was always strong, independent, a loving mum, always concerned for the welfare of others. Helping with showers, getting all the meals, shopping, house work done, but agreeing when mum insists she still goes to the shops on her own on the bus every Wednesday,, does the grocery list, etc. Dementia does not do logic very well so any change has to come from me, which gets a little easier after each new issue is worked around. Gave up on perfection long ago, now get arounds suffice.
There was an old saying only recent years have shown to me what it means. They were the best of times they were the worst of times. The worst represents Dementia a cruel and unforgiving, uninvited guest in our household. The best in that I can help my mum see out her days in the best ways possible despite this illness. I can be there for her when it counts.
Let me give you a few tips. Learnt the hard way and sometimes after help from others answering my threads on here.
1) If in doubt post on here. This forum is an interesting group. No one wants to be a member, we would all prefer our loved ones did not have Dementia. That said this is a warm, friendly, supportive environment. No judging, experience freely shared, dignity respected. I recently read a thread about a lady arranging for her mum to be placed in a care home, the reasons why, the days getting ready, the day of the move, the days that followed. It was a very personal account, honest, brave and a genuine attempt to help others who one day may face such an agonising decision. I for one will never forget the honesty and courage that took to help others. That said some threads have humour. Dementia throws up many issues. It is great to have a forum based on people who have experienced so much and are very willing to share. So remember if in doubt do post.
2) Reading my earlier comments I wish to strike a balance. Caring for a frail loved one with Vascular Dementia is hard. You will already know that. But it can bring its rewards. When I gave up full time work in 2017 as Dementia was getting on top I left a job of 25 years in local government. In a few short years I have learnt more about myself, what is important in life, what needs to get done and what is not required, where I can make a significant difference and where I need help myself, etc. As a person I am not the person I was in 2017, I believe I am a better person. Guess I am trying to say it was in some ways the making of me as a better person. Apparently my grandad use to say nought is wasted. Please try and look for positives and ignore the darkness Dementia can bring to any day. Not easy but it will be dark unless you seek out what little light there is.
3) I know they are closed at present but in the future if you get the chance please join a Carers Group. I felt uneasy going as everyone else attended with their loved one suffering Dementia. However I was made welcome, met lovely people, learnt a lot and stopped feeling quite so alone. My siblings help but as mum insists there is nothing wrong with her they can only visit weekly As they did pre Dementia. I try and spare them some of the problems as they develop, trying to ensure they can relate to mum as she wants to be seen. Increasingly difficult as mum repeats herself and mixes up memories, asks the same questions which have just been answered, etc. My temptation initially was I will tackle this on my own. Stupid male outlook. Found this forum, read some books (some more helpful than others if you want some advice), stumbled into the Carers Group, etc. Now I meet a new problem and if not in my current knowledge bank I reach out for advice and guidance. Have a look through the advice leaflets on this site, really good stuff to read and download.
4) Please remember that no two Dementia cases are the same. Both our mums may have Vascular Dementia but our experiences may be similar or very different. Luckily my mum trusts me, we have lived together for years and I know what she likes and what annoys her, best way to work around giving increased help in personal matters, etc. I have experienced (at least to date), no violence, personality changes, etc. My mum has suffered more from loss of memory, mixing up memories, does not recognise when she is hungry or thirsty, little comprehension of the passage of time, etc. As her illness develops I am sure other issues will appear, some off and on, some slowly moving into focus and some arriving fully developed out of the blue. Keep an open mind on what Vascular Dementia might involve.
Well as usual this old man has prattled on and covered a lot of ground. Hope some of it strikes a chord. Hope you enjoy good fortune in helping your loved one. Mum stirring from her nap. Go for a little walk up the alley as the sun is out. Mum will ask why it is so quiet no knowledge of the virus retained. I will smile inwardly and point out the pretty flowers in some back gardens and distract by discussing our mugs of tea and a fancy biscuit when we get home. Bribery works wonders.
Yes I am in the same situation. Mum (frail 88yo) refuses to go back to the Memory ClInic where MCI was diagnosed in 2015. Her history of heart problems and worsening memory means we have slipped into Dementia. The GP agrees but we have no formal diagnosis. In the end what does that matter when the condition presents to me each day in ways I need to deal with.
Gave up my limited part time work in March In a supermarket as the threat of bringing Coronavirus home with me was just to great. Pity as two nights a week was all my caring role would permit, but the development of the Dementia would have ended it sometime in the relatively near future I am sure. Loss of the Care Group I attended on my own was another support mechanism gone at the same time. Attending on my own as my mum insists there is nothing wrong with her. My siblings have helped me go into social isolation with my mum, helping out with gaps left by internet shopping. We Skype a few times a week but mum still believes they visit regularly. I am at times confused by her with being my dad or grandad, mum talking as if I am her husband (dead over 30 years ago), or her dad (died early 1960s).
What more can I say? Love my mum to bits, would do anything I can for her, have learnt the new normal in our house, how to distract, stopped feeling guilty about telling love lies, have got the LPAs in place and registered. Sharing a house with a loved one but at rare moments feeling desperately lonely. Accepting I am now running the life of a loved one who was always strong, independent, a loving mum, always concerned for the welfare of others. Helping with showers, getting all the meals, shopping, house work done, but agreeing when mum insists she still goes to the shops on her own on the bus every Wednesday,, does the grocery list, etc. Dementia does not do logic very well so any change has to come from me, which gets a little easier after each new issue is worked around. Gave up on perfection long ago, now get arounds suffice.
There was an old saying only recent years have shown to me what it means. They were the best of times they were the worst of times. The worst represents Dementia a cruel and unforgiving, uninvited guest in our household. The best in that I can help my mum see out her days in the best ways possible despite this illness. I can be there for her when it counts.
Let me give you a few tips. Learnt the hard way and sometimes after help from others answering my threads on here.
1) If in doubt post on here. This forum is an interesting group. No one wants to be a member, we would all prefer our loved ones did not have Dementia. That said this is a warm, friendly, supportive environment. No judging, experience freely shared, dignity respected. I recently read a thread about a lady arranging for her mum to be placed in a care home, the reasons why, the days getting ready, the day of the move, the days that followed. It was a very personal account, honest, brave and a genuine attempt to help others who one day may face such an agonising decision. I for one will never forget the honesty and courage that took to help others. That said some threads have humour. Dementia throws up many issues. It is great to have a forum based on people who have experienced so much and are very willing to share. So remember if in doubt do post.
2) Reading my earlier comments I wish to strike a balance. Caring for a frail loved one with Vascular Dementia is hard. You will already know that. But it can bring its rewards. When I gave up full time work in 2017 as Dementia was getting on top I left a job of 25 years in local government. In a few short years I have learnt more about myself, what is important in life, what needs to get done and what is not required, where I can make a significant difference and where I need help myself, etc. As a person I am not the person I was in 2017, I believe I am a better person. Guess I am trying to say it was in some ways the making of me as a better person. Apparently my grandad use to say nought is wasted. Please try and look for positives and ignore the darkness Dementia can bring to any day. Not easy but it will be dark unless you seek out what little light there is.
3) I know they are closed at present but in the future if you get the chance please join a Carers Group. I felt uneasy going as everyone else attended with their loved one suffering Dementia. However I was made welcome, met lovely people, learnt a lot and stopped feeling quite so alone. My siblings help but as mum insists there is nothing wrong with her they can only visit weekly As they did pre Dementia. I try and spare them some of the problems as they develop, trying to ensure they can relate to mum as she wants to be seen. Increasingly difficult as mum repeats herself and mixes up memories, asks the same questions which have just been answered, etc. My temptation initially was I will tackle this on my own. Stupid male outlook. Found this forum, read some books (some more helpful than others if you want some advice), stumbled into the Carers Group, etc. Now I meet a new problem and if not in my current knowledge bank I reach out for advice and guidance. Have a look through the advice leaflets on this site, really good stuff to read and download.
4) Please remember that no two Dementia cases are the same. Both our mums may have Vascular Dementia but our experiences may be similar or very different. Luckily my mum trusts me, we have lived together for years and I know what she likes and what annoys her, best way to work around giving increased help in personal matters, etc. I have experienced (at least to date), no violence, personality changes, etc. My mum has suffered more from loss of memory, mixing up memories, does not recognise when she is hungry or thirsty, little comprehension of the passage of time, etc. As her illness develops I am sure other issues will appear, some off and on, some slowly moving into focus and some arriving fully developed out of the blue. Keep an open mind on what Vascular Dementia might involve.
Well as usual this old man has prattled on and covered a lot of ground. Hope some of it strikes a chord. Hope you enjoy good fortune in helping your loved one. Mum stirring from her nap. Go for a little walk up the alley as the sun is out. Mum will ask why it is so quiet no knowledge of the virus retained. I will smile inwardly and point out the pretty flowers in some back gardens and distract by discussing our mugs of tea and a fancy biscuit when we get home. Bribery works wonders.
Hi Whisperer thanks so much for posting I almost cried (I would have cried but I've just come back from my daily exercise in the park and am very calm). Thank you too for the excellent advice. It all resonates - i took early retirement from the NHS to live with my mum. She is 95 and only just manages to walk eg from bedroom to bathroom and then has to sit down. But it's enough mobility for me to manage and I take her out in a wheelchair. The thing I struggle with most is that she has virtually no executive function so has to be directed all the time. She constantly asks me what she should do next. Much of the day I actively adopt the role of a professional carer rsther than being her daughter as it allows me to be objective and more caring. I agree that I was becoming a better person - that is before lockdown. Now I don't get any breaks at all I find myself occasionally overwhelmed with rage and have used Dementia Connect once when I almost shook her. I know it's shocking. As I write this I'm wondering whether getting some professional counselling would help. I know it's to do with the fact that my mum was hard on me as a child and often thrashed me with a hairbrush. And now I have to be so kind to her - all the time - whatever the situation. Probably classic situation to be avoided but i thought it was all forgiven and forgotten. I'd like to work through it and It helps just to be writing this down. By the way....What is an LPA?
Hi. I can appreciate where you coming from with your mum . It is very hard in this lockdown. I help look after dad with carers now (I also have mum in her own house) as it got too much. Dad never beat me but was never around as too busy for a child...An LPA is lasting power of attorney in which you can take over the paying of bills etc to do with your mum’s finances and there is one for health and Welfare. Have a look online . I hope you have a better day?
Hello @Lalafatma
You are in a very hard situation. Being a 24/7 carer is incredibly difficult, especially once they cannot be left alone at all. Did your mum go to day care and have carers in to help you before the lockdown? If not please contact Social Services to get the ball rolling for when they open again.
I tried counselling after carers breakdown, but I found that the counsellor, though very nice, had no idea about caring 24/7. She told me that everything I did revolved around OH and this was not good. I told her I knew this, but it had to be that way - even taking some time out had to be done with making sure that OH was OK first. She just didnt seem to understand.
PS, LPA = Lasting Power of Attorney
You are in a very hard situation. Being a 24/7 carer is incredibly difficult, especially once they cannot be left alone at all. Did your mum go to day care and have carers in to help you before the lockdown? If not please contact Social Services to get the ball rolling for when they open again.
I tried counselling after carers breakdown, but I found that the counsellor, though very nice, had no idea about caring 24/7. She told me that everything I did revolved around OH and this was not good. I told her I knew this, but it had to be that way - even taking some time out had to be done with making sure that OH was OK first. She just didnt seem to understand.
PS, LPA = Lasting Power of Attorney
hello @Lalafatma
a warm welcome from me too
Lasting Powers of Attorney give you the legal authority to manage your mum's affairs ...
www.gov.uk
or, if she no longer has capacity to grant these, apply for Deputyship
www.gov.uk
I hope your mum receives Attendance Allowance, then you can apply for Carer's Allowance
www.gov.uk
www.gov.uk
well done on calling the Support Line when you were angry ... it's a concern, though, and means you need support to help ypu care for your mum
please contact your Local Authority Adult Services now to request an urgent assessment of your mum's care needs from which a care package will be suggested eg home care visits to take some of the pressure off you, respite, an OT visit to suggest aids ... do not give any financial information at all, tell them your mum keeps that private, as the financial assessment should come after that for care needs
be brutally honest with Social Services ... admit that the anger nearly got the best of you as this makes your mum a 'vulnerable adult at risk of harm and could become a safeguarding issue', which ought to get their attention - use those words ... this is not a reflection on your care for your mum, it is down to the situation you are both in
this goes through the financial side
www.alzheimers.org.uk
Admiral Nurses are there to support the carer, so you can call them too
www.dementiauk.org/get-support/admiral-nursing/
and keep posting here, members understand
a warm welcome from me too
Lasting Powers of Attorney give you the legal authority to manage your mum's affairs ...
Make, register or end a lasting power of attorney
How to make a lasting power of attorney (LPA): starting an application online, choosing an attorney, certifying a copy, changing an LPA.
Deputies: make decisions for someone who lacks capacity
How to become and act as a Court of Protection deputy - eligibility, responsibilities, how to apply, fees, supervision and when your deputyship ends.
I hope your mum receives Attendance Allowance, then you can apply for Carer's Allowance
Attendance Allowance
Attendance Allowance helps pay for your personal care if you've reached State Pension age and are disabled - rates, eligibility, apply, claim form AA1.
Carer's Allowance
Apply for Carer's Allowance - money to help you look after someone who needs to be cared for. Apply online or use form DS700.
well done on calling the Support Line when you were angry ... it's a concern, though, and means you need support to help ypu care for your mum
please contact your Local Authority Adult Services now to request an urgent assessment of your mum's care needs from which a care package will be suggested eg home care visits to take some of the pressure off you, respite, an OT visit to suggest aids ... do not give any financial information at all, tell them your mum keeps that private, as the financial assessment should come after that for care needs
be brutally honest with Social Services ... admit that the anger nearly got the best of you as this makes your mum a 'vulnerable adult at risk of harm and could become a safeguarding issue', which ought to get their attention - use those words ... this is not a reflection on your care for your mum, it is down to the situation you are both in
this goes through the financial side
Paying for dementia care in England
Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.
www.alzheimers.org.uk
Admiral Nurses are there to support the carer, so you can call them too
www.dementiauk.org/get-support/admiral-nursing/
and keep posting here, members understand
Hello Lalafatma
Sorry to hear of your troubles in the immediate moment. Good advice has been posted about contacting social services to put care support facilities in place when the lock down is eased. However I am guessing you might need some contact right now, at least over the Internet. I am guessing Dementia Connect offered some guidance and not knowing what was said I risk repeating it. That said
1) Glad you got a chance for some exercise in the park. I am sure your NHS background gave you first hand experience of how much exercise of the body can help reduce stress. Perhaps I could suggest an enhancement that works for me. I actively try and take in the world. Yes tree leafs are green but there are remarkably different shades when you really look. Bird song when you listen. Just stop for a moment and really look. You see more and crucially your mind wanders to process the detail. The human brain being distracted has to temporarily let go of the caring stress. We distract our loved ones when required but it can work just as well for the carer.
2) Caring brings with it many emotional upsets. You can get terrible feelings like rage, guilt, frustration, stress, possibly the reasonable periodic question why me. But let’s just look at what you have said. You almost shook your mum, but you did not do so. You reached out for the limited help available in lock down. Bad prior memories resurfaced. They were most likely previously resolved as regards normal life going on. But caring drags things up in very emotionally charged circumstances. Tiredness weakens a person, increases mental stress in the moment. You used the word shocking but please try and read what I have just quoted back to you. All measured responses, reassessing what nearly happened, logic applying. You dealt with the situation well, recognising the problem, seeking an answer, not letting matters build. Remember cut yourself that slack.
3) Always remember you are part of the answer not the problem. People stumble into caring, they have emotional reactions, few with no direct experience of Dementia really understand the demands of the situation. The guilt monster can whisper in your ear. The situation is unfair. Not weakness to say that just an acknowledgement of reality. You care for, love, support your mum, even as you act as a professional carer as you put it. I understand what you say about being an objective carer, but the human mind sometimes rebels against such logic. If your objectivity slips at times and you find yourself the daughter again I suggest roll with it. Something gets said, a memory stirred and before you know it emotions appear in you. Professional carers at times find it hard to maintain detachment. A daughter, even with prior NHS training and professionalism, I suggest will find it hard to always be detached.
4) Your comment about lack of executive function hit home to me. Not one single event but a road over time, made up of a succession of minor steps. Deciding meals, arranging appointments, having to explain to third parties and neighbours, taking over financial matters, having to reduce expectations of what is possible, distracting when required, taking the lead when engaging with the outside world, etc. Each step you know will be followed by others, none will reverse into how things use to be, you are torn between doing what is required but in your heart you wish was not. I think you are further down that road than myself. Tell me does it get any easier that insane feeling of betraying the person you care for, as you gradually take on their life. The balancing act of doing so but in ways you hope are not noticed or soon forgotten. Anticipatory grief I have come to understand but not control.
One last point which I think you are doing at some level already. Check in with yourself a few times a day. How am I doing. Hello old friend are you still well. Time to let that feeling go. Usually when I am washing up, preparing a meal, changing to go to bed. It is very easy to be fully focused on tasks during the day, to become detached enough you sometimes forget about yourself. Hard to put down in words what I am trying to convey. Clearly as a person you live, you function, but do you really ask yourself how you are doing. Click off for a moment as you click on the kettle. Hope that makes sense.
Please keep your spirits up. Lockdown and Coronavirus have added to the problems of home carers. One day lockdown will gradually relent. Perhaps then the rest of society will reflect on the role of family carers, the demands made on them and how they can be helped. Hopefully something a little more practical than warm words and promises.
Hi Whisperer and others who so kindly responded to my message. I have spent 10 days mulling researching meditating and also reading your very useful and wise advice. I am pleased to report that I feel very different this week. Much calmer. I've had to work very hard at understanding what's going on. My mum me and the dementia was not really the problem but it was the trigger for a breakdown of my normal coping mechanisms. I was avoiding really slowing down to my mum's pace. Instead of slowing down and being patient I was wanting to run away all the time and then getting angry because I couldn't. I guess slowing down frequently (and I agree focusing on nature is such an important aspect of that) was bringing me face to face with myself which I couldn't handle. But since I've accepted this phenomena it's actually been so rewarding! I no longer fear what may be lurking - I'm no worse and no better than anyone else. nature helps me to find my real place in the world. Reminds me of that cheesy song in Mamma Mia. Not needing to run or something like that! Thank you for encouraging me to carry on and giving me the confidence that I can. We 've even had quite a few laughs recently - and more motivation to get out. I will keep reading your threads as no doubt thrre will be good and not so great days ahead. And just lastly to answer the question do you ever get over the insane feeling of betraying the person you care for I'm still thinking about that one!
Ho @Lalafatma , Im glad you are feeling calmer now. Caring is a real roller coaster, so dont feel bad if this calmness slips at times. Like a small child who falls over, pick yourself up and carry on.
Anger is very akin to fear. Our PWD becomes angry and aggressive when they are frightened, and, actually we do too.. Keep reminding yourself it doesnt have to be perfect, and keep going on those walks - perhaps with mum. I still have lovely memories of taking mum out and pushing her along the prom so that she could see the sea and perhaps eat an ice-cream.
xxx
Anger is very akin to fear. Our PWD becomes angry and aggressive when they are frightened, and, actually we do too.. Keep reminding yourself it doesnt have to be perfect, and keep going on those walks - perhaps with mum. I still have lovely memories of taking mum out and pushing her along the prom so that she could see the sea and perhaps eat an ice-cream.
xxx
Hi i care for my grandad with vascualr dementia hes lives with me and my family its the hardest thing I've done. He is 86 and very frail use to frame round the house and has had a few fails.
Glad to see you in better balance. Please continue to ponder my question, it is the one thing I cannot get right for the life of me. Sunny day, birds singing in the garden, mum just spoken to my sister on Skype then within minutes querying when did she last contact us. All is well in the new normal of the Dementia world I now inhabit. Please stay safe and well, I guess go with the flow of each day.
I think the control thing is so complex. My mum wa ts me to take o
So about this control thing. My mum seemed quite happy for me to take over her official affairs - but I have been helping her since she had her stroke in 2007 when her decline has been so slow and like you and your mum I know her very well and have always done what she would do anyway and she doesn't seem to have noticed and certainly doesn't now ever comment. She used to talk a lot about her handbag and money and I always made sure she was involved in payment etc as much as possible with my support. Now she asks where her card is and then always...oh yes you spend my money now - but i always make sure her bag is available and she sometimes goes through it in a half hearted way. But what I have tried to do is keep her involved in the things I know are really important to her eg food, clothes, continence, correspondence, books, listening to the news, a tablet (although she's never had a computer) I mean she needs 100 percent support ie she can mix a cake up with a bowl on her lap, she watches short programmes on the tablet that I set up for her. I mention continence because recently she had made a few comments on the new supplies that had been sent and even though she can no longer clearly Express herself she said enough for me to guess she didn't like the night time supplies and wanted the pull ups she used to pay for herself and are really expensive. Now I also know that my mum likes to be careful with money so we talked about that and the fact that I can't keep going to Boots to buy them like before lockdown. but then it occured to me that I might be able to get them cheaper and delivered. My mum became quite definite about wanting to order these from Boots and even instructed me to double the quantity. When they arrived she was so pleased as she now feels much more confident that she can still be independent at night. I've gone into detail on this one because to me it was a example of my mum's motivation overriding her usual passive behaviour - she doesn't know what day or time it is etc and unless you know her well you wouldn't have a clue what she's talking about. So maybe if the person can keep some control over key areas it's easier for them to deal with the loss of control. Your mum is much more able than my mum so none of this may apply - I had an aunt with dementia who was always trying to escape and drive her car. And in the end they had to keep the doors locked. My mum seems to want me to totally take over her life - she now always asks permission to put her legs up onto the bed before lying down. Can I put my legs up? I draw the line here as (apart from being really irritating) I am worried by giving me so much 'power' over her she may then start to see me as malevolent rather than benevolent. I always say Now that is entirely up to you! Which she seems to accept. I think your job sounds much tougher than mine if your mum is still able to go to town on her own on the bus! Just some thoughts... ps we had such a great nosey around warwick uni today. It's deserted you're allowed to park there and very wheelchair friendly! Much better than the park. Yesterday a kind couple asked if they could help me push my mum's chair!
Whisperer & Lalafatma
I wanted you to know how helpful I have found your posts. I have similar experience of care demands as Whisperer and my childhood was with emotionally distant parents. I recognise that caring for one of those parents brings up childhood feelings you thought were dealt with and long buried.
I have been living with, and looking after my mother on my own for 7 years (she's a frail 97, dementia/alzheimers and housebound) for. It's been a long road which gets steeper and I have relied on the Talking Point forum in my lowest times. Sometimes you need to feel you are not alone in the experience.
My mother can walk to the bathroom and back but that's about it. A carer comes in to give her a strip wash but I do everything else. She can no longer change the TV channel and all she does all day is sit in the chair and watch TV. So with cleaning, washing, providing meals and even choosing the TV programmes she likes to watch (she no longer can distinguish between a programme and an advert) I feel as though I am living her life and not my own.
Thank you again for posting , it has helped.
Hello again
Better clear up one point to start off with. My mum thinks she still gets the bus into town, in reality she has not done so for several years. One hundred percent illusion of control.
Reading your comments really struck a chord with me. Unless you have cared for someone who has Dementia it is so hard to explain. Siblings initially either think all is mostly okay or lurch into panic mode when the mask slips at times. You get the balance right then things move onto new realities and you have to explain again. As you say trying to let the person exercise control where they can, even if in reality it can be an illusion of control. Your mum’s use of the tablet, the negotiation over the pull ups, etc. Thank you for your detailed reply. You have put into words what I would have struggled to do so.
The situation further complicated by the gradual decline of mental and physical capacity, meaning the previously workable arrangement has to be reviewed. When we went out shopping before lockdown mum use to like to pay at the ASDA check out. I would watch her whilst packing the groceries, getting the money out. Initially counting her coins to try and pay the exact amount as she always had throughout her life, then later on just using just notes, then a little confusion as the notes texture changed, then early this year mum at times looking at me and holding out her purse, silently asking me to help her. Where actions slowly changed over time it showed me where mum was at, where matters were changing. Again every week she would stay at the magazines aisle. We went Wednesday afternoon and she would pick up her Peoples Friend she has read for years. Came out that day so she always got the latest one without any thinking required. Problem is there is a three weekly special issue and mum always wanted to get that as well. I would have to explain we already had that one having bought it in an earlier week. Buying the weekly one there is no problem to an unknowing observer, the special issue revealed the loss of memory or understanding of what day, date, month or year it is.
Thank you for your relies. I am glad I answered your thread. General comments leave you wondering if you are really getting things at times. Shared detailed experiences readily feedback into your own experiences. Thank you for taking the time and allowing a stranger into parts of what is a private world. Funny this forum feels safe to open up, seek advice, discuss very personal matters but in some strange way still feel confidential. Politicians use the phrase we are all in this together. Well on this forum we all are and although we never meet we trust and rely on each other for advice, information and support.
Please can you advise of the role of a community dementia adviser. Mum will not go back to the Memory Clinic. That use to really bother me in case she was missing out on medications that might help. Others here assured me Vascular Dementia has no medication beyond trying to control blood pressure, which we are doing. The GP has been supportive but lockdown limited that direct contact, the care group has been suspended, this forum is about my only source of help and guidance. Do you meet that type of adviser after a Memory Clinic diagnosis? Things are going to get harder and I just feel exposed and isolated at times. Mum is starting to have toilet accidents, at present minor, not frequent, I can handle things, total opposition to pads at present from mum. It would be reassuring to have contact with such an adviser.
Any way the sun is out. Walk up the alley together, make some rock cakes and a crumble, mugs of tea sat in the garden. Some moments life can seem like old times. Wishing you and your mum a lovely bank holiday weekend. Thanks again for your detailed and thoughtful reply.
You are more than welcome. Just a thought that might help. Channel 40, 45 and 50 On freeview show movies. Some weekend day times there are really old black and white movies showing. I sit sometimes and work out that the film is over 60yo. However for my mum that lead actor is someone she remembers from going to “the flicks” years ago. I am advised “he is a bit of alright”. Control yourself mother. Point is perhaps your mum might recognise some of the old stars eh Bob Hope, Bing Crosby? Just thought I would mention the point as your mum is watching TV but you are selecting the channels.
HI April 100 Thanks for your response - 7 years. That's amazing. I expect I need advice from you. Re the resentment and anger In the end I booked a session with a psychological counsellor (today) on line which I used my mum's money for (she would definitely want to support me in any way she can). It was really useful and basically he agreed that self compassion could help in dealing with the childhood stuff and his opinion was that due to lockdown my situation had gone from very difficult to off the scale. In a nutshell! I feel encouraged that the emotions are justified - not that I'm a bad person (and if I understand them they are less likely to pop up expectedly. So I will be working on that.
Hi April 100 you're welcome. Sounds as though you're an expert if you've been looking after your mum for 7 years! It does sound a long day. Can you leave her on her own at all? I feel I need to fess up here that because of a collapsed spine and her great love of sleeping and 'day dreaming' my mum goes back to bed at 9 am till 12 then has a nap from 2-4.30 and is back in bed at 7.30 pm. At night she sleeps 12 hours straight (apart from independently using the commode once or twice). If she's asleep she never gets up. I have to wake her. She's like sleeping beauty. You're all going to hate me now! I don't think I could do this if I couldn't leave her to go out for a cycle ride or walk round the park. How do you manage?
Hi Whisperer. First things first. A dementia community advisor is a free service provided by the Alzheimer's society. Tbe advisor's support about dementia has been invaluable to me. My mum's social worker referred me to the service but you may be able to self refer - check out your local Alzeimer's website or phone the helpline for info. I was in the middle of one of their local courses on Dementia before lockdown. The course was great but you can access most of the info online. As regards continence that would be the District nurses who do an assessment (currently over the phone). You need a referral to them via the GP. I would encourage you to do this asap because we waited over 6 months for the assessment. My mum did also recently get called to the memory clinic much to my surprise because she had already had a diagnosis of dementia at the specialist clinic at the hospital around 2010. Anyway turned out it was a mistake. Hope that's helful. Thanks too for the info to April100 about accessing old films. My mum is obsessed with films but as she can't hear much (and certainly not follow conversation) she depends on visual stuff so likes very slow films particularly period dramas, or films she practically knows by heart. So i was thinking black and white movies would also be good for her. You know what you said about checking in on yourself. Such good advice. I 've been practicing it. I find the nicer I am to myself the nicer I am to my mum which is a win win outcome. I thought i had deleted my first reply to April100 as I decided the info might not be very useful to anyone else. Ah well...technology! Hope you have a good weekend.
