Stress when dealing with dementia in a loved one.

[crafty_grannie]

Hi everyone,

A few posts have mentioned the stress of caring for a loved one with dementia. Caring for, helping to care for, or even visiting someone with dementia can be very difficult for both the person who has dementia and everyone around them, and stress levels can get very high, which is the last thing we need. When my father died, his death certificate stated "pneumonia and dementia" which no one, doctor or staff at the home he was in, had ever mentioned to me. I had no experience of dementia and knew nothing about it, I guess just assuming that when some people got old, they "weren't really with it, a bit senile". I can't believe that, sadly, I was so ignorant ten years ago. I immediately started researching everything I could find and came across a course called "Understanding Dementia". It is a FREE, online course run by the Wicking Dementia Research and Education Centre, at the University of Tasmania, in Hobart, Australia. It is a Massive Open Online Course (MOOC0), offering university-quality education about the latest in dementia research and care. It is an absolutely amazing course, well presented in a clear, easy to follow style (no heavy lectures), not requiring exams or assignments.

Over the last few years some close friends and two relatives have been diagnosed with dementia, and I have seen some very stressed, frustrated and at times, angry carers. It can be hard to recognise that a person's behaviour is caused by dementia when they seem to be deliberately being difficult and argumentative. Getting a better understanding of dementia as well as learning ways of supporting and encouraging the person with dementia, can reduce stress and make life happier for everyone.

Sorry this is so long but dementia is regarded as one of our biggest health issues which will affect many, if not all of us, in some way over the coming years. The more we know and understand, the better we will manage it and reduce everyone's stress. If you've got this far, thanks for reading. Mary

utas.edu.au/wicking

[SheffieldJane]

Thank you for posting Mary. I am sure people will find this helpful. My mum passed away in 2013 with Dementia. Dealing with everything that arose was definitely a precipitating factor in my PMR diagnosis.

[fmkkm]

Thanks for the link. I liked the chart about halfway down. It reminded me that there are things I can do now to possibly prevent dementia in the future or maybe delay it anyway.

[PMRpro Ambassador]

And speaking from personal experience - it isn't actually only the demented patient who can cause those feelings of frustration, especially when you are living with someone who has become chronically ill and unable to do things but won't admit it. Often it is is easier when they are in care and you have at least the physical distance to breathe and relax.

[Hidden in reply to PMRpro]

🤗

[singingloud]

Thank you for sharing with us. I will take some time to look into this class. I also have a kindle book called “ The Thirty six Hour Day”. It might be helpful for others.

[Silver-Babe]

This has sparked off a thought fir me. Last August, my husband of 57 years long, had a terrible fall on his head , having been just diagnosed with Alzheimer’s. He was immediately hospitalised, but then we saw he went into Lewy Body Dementia. Couldn’t cope with him so he is now happily in a nursing home .

But would the stress of all this for me, the agony of losing him in nearly every way, the missing, the grief have brought on my PMA by December?

[PMRpro Ambassador in reply to Silver-Babe]

It could have been the final straw for your immune system - stress can have an effect on it just like infections or environmental efeects.

[Silver-Babe in reply to PMRpro]

That’s interesting Ambassador. I wonder whether this has ever been discussed before? The link between dress snd PMR?

[PMRpro Ambassador in reply to Silver-Babe]

Frequently, yes.

[Coffeebeans]

Thanks for this crafty-grannie

My grandmother had years of dementia before she died. I remember several stages throughout and a definite argumentative and aggressive stage. It's very hard as a carer to manage this.

More knowledge is good!

[LCfan]

I am looking after my 74 year old husband who has alzheimers and vascular dementia plus a history of falls, chronic arthritis and other problems. I am nearly73 myself and have PMR which recently flared up when I just got off pred. Also osteo arthtitis and osteoporosis. I find it very hard to cope when I don't feel so good myself, and since lockdown all support groups and contact with others has stopped. I am trying to manage caring at home for as long as possible as nursing homes are so expensive for dementia. I will try to have a look at this course if I have time.

[Silver-Babe in reply to LCfan]

I am so sorry for you. I had several months of this before my husband had his fall. He is also blind and bedridden having also lost his brilliant brains. So there was no chance he could remain here . It is expensive but you mustn’t lose you’d life as well . Suggest you join another support group Face book Alzheimer’s Carers group. Lots of harrowing stories there but so relevant to us at the moment. And unlike us, perhaps many of them haven’t been inflicted with PMR as well .... But just look aftervYOURSELF because it’s your life too! And you’re young compared cup a lot is us- I’m 77 snd he is 82. Good luck!

[crafty_grannie in reply to LCfan]

If you can make the time, I think you would find it worthwhile. I have a friend, 80, caring for her husband with dementia. She didn’t use a computer, so I would take my laptop when I visited and show her some of the videos. She found it very helpful, giving a much better idea of what her husband was going through, which helped her respond more calmly when things became difficult. It can also help others understand better. One of her daughters then did the course and later arranged for a qualified dementia worker to attend a family meeting to share more information with them.You certainly have plenty to deal with. I hope you are able to access some support soon.

Mary

[LCfan in reply to crafty_grannie]

Thank you so much for all the info. I wasn't aware of a facebook group for dementia carers. The memory cafes and groups we used to go to were helpful and we didn't feel so isolated. I sometimes wonder how all the others we met are managing since covid struck. Maybe they found an online group. Thanks again for all your help

[Mijmijkey74]

My family going through hell trying to cope with my Mum who has possible dementia. My dad wouldn't take any action to get Mum help, l undestand him stressed, overwhelmed by all he has had to take on and fearful of any action he took upsetting Mum so much she no longer trusted him, but Mum's issues have been going on for 5/6 years and Mum was getting worse. Dad had decided dementia and stated that pretty much became of his conclusion he wasn't going to take Mum to her gp, hospital or seek out any help as no point as nobody could do anything and it was only going to get worse. I had to step in and take over ensuring Mum seen by her gp, was seen at memory clinic and had ct scan "recently done now" and gp ordered blood tests. Mum scored poorly at memory clinic, has high blood pressure anyway and had stopped taking her bp medication long ago and at memory clinic hes bp was sky high. Now on bp medication again it having been reissued. No diagnosis yet for Mum due to awaiting results from ct scan and blood test results when Mum has blood tests done in next couple of days. Problem is Mum now turned on me even more because l stepped in, Mum so irrational she can't comprehend no matter how much dad & l try to explain that this done out of love, care, concern for her welfare and that dad who admits it couldn't do anything for reasons already mentioned plus his own health issues he is worrying about. I had no choice but to step in as Mum needed to be seen and it just may not be dementia due to two horrific falls Mum's had both times hitting same side of head and blackening whole face down to neck black, blue, purple, green, yellow both times looking like she had been beaten in face with a baseball bat. Last fall in 2019 Mum declined further after it, wasn't taking bp medication at time, may have had stoke causing falls, and incurred brain injury first and second time damaging same area of eye socket/forehead/temple again in last fall which also in last fall resulted in Mum's cheekbone being concaved. Took hospital, dad was rn inpatient at time with sepsis, mum seen by triage before back out to a&e to be properly checked over by doctor and x rayed or given mri/ct scan. Dad met us at a&e after waing less than 2 hrs dad started convincing mum she was tired, not to wait, to go home not be seen. Then abruptly phoned a taxi for Mum to go home without giving Mum chance to object or anything. Mum at home had wanted to go to a&e to be seen recognised then herself she was injured and poorly and need to be seen. Then dad being ill not in his right mind instead of being honest and saying sorry love l'm ill need to go back to my ward but "me myself & my son" will stay with you, he instead irrationally took over and because Mum had got worse in a&e she didn't object so was never properly seen that day and only had her bp taken by triage never saw the doctor. Everyone sat in a&e was mortified by my dad's actions and it was very apparent Mum urgently needed to be seen. My son and l pleaded, tried to rationalise with them both for mum to stay and Dad ti just go back to ward as he was part of the reason behind Mum having fallen by sending her out in the dark on a cold winters night to next town a fair distance away to get him Chinese food to then drive it back all the way to the hospital in the opposite direction him already knowing Mum didn't like driving in the dark and was already struggling memory and behavioural changes wise. Neither would listen to us for mum to remain in a&e. Mum had fallen in that town a fair distance away in the dark and cold completely alone after getting his food and l had tried to convince Mum not to go out for that food as it was an unreasonable very selfish request from him for Mum to do so late at night already when it was evident to me with Mum sat on sofa in front of me that she really was to physically drained and exhausted to be going out anywhere. I was at the time also recovering from a coma. So knew Mum had been through the mill and needed rest, tried telling Mum not to go, Mum admitted she didn't want to go, but wouldn't listen to reason from me of not to go. And off she went and had that horrendous fall whilst there in that town and called me on her mobile to tell me in the most heart breaking voice l will never forget that makes me cry to this day recalling it saying l've fallen 😭 l've fallen again. I need to go to hospital. I told mum to stay there not to move l would get rn ambulance to her as l don't drive, was so afraid for Mum that she might die and l couldn't get to her quickly because of my own physical state of recovery too. I thought Mum was staying put but next thing l bnew Mum was telling me she was in the car driving home and kept repeating she needed an ambulance. Told me to pull over as she could collaspe at the wheel, so sad all mum was concerned about was my dad's food and getting it to him and even took it to the hospital to give to dad who selfishly slunk off to his ward more concerned about eating his chinese excited by it them concern for his wife or any guilt as to him being the reason/cause Mum fell as she certainly wouldn't have fallen had he not been so selfish in demanding not requesting Mum go out and get him food from miles away then drive futher miles to deliver to him, then drive further miles back home in the cold dark Mum not seeing well to drive in dark and not liking doing it either which Dad knew. And then his behaviour in a&e and ordering mum a daxi home in the horrendous and injured state she was in is disgusting, heartless, selfish and unloving and uncaring and then allowing mum thereafter to futher decline and not seek any help for Mum l find completely unforgiveable. Mum had been through so much, me not expected to survive in my coma critically ill whilst at the same time my son and dad both had horrendous flu my dad so ill with it he was being seen as an outpatient at same hospital l was in my coma in fighting to survive. Dad had lost his memory, was having funny turns and before my coma had lost his sense of smell, taste. Dad being seen en hospital extemely unwell unbeknownst to me in my coma was having mri's and other tests done. He'd had a bleed on his brain at some point it had been discovered. Dad had lost so much wait was so confused Mum thought was going to lose us both as l wasn't expected to survive. All that stress on my poir mum who was already struggling with her memory and exhibiting personality/behavioural changes, this was before her second fall. Then l was finally home and still recoving in the Nov of 2018 having returned home in the feb when dad fell seriously ill with Sepsis in hospital until jan 2019 and mum had thrt second fall eithes 2018 or 19 when dad still in hospital. So so much stress, worry and grief yet up until just months ago dad kept saying he was going to get mum help, never did in 5/6 years since Mum fist started displaying dementia like symptoms then last straw dad saying he wasn't going to get mum help or seen so he had all these years to get mum help, so this year after him saying that l took action. Now my mum hates me and wont let me hug or kiss her, won't speak to me, shouts at me and if mum does turn out to have dementia don't want our last precious times together being mum hating me, feeling so angry towards me full of resentment and hatred as l love and care about my mum so very dearly it is so upsetting and breaking my soul and heart.

[Mijmijkey74]

And l just don't know what to do. Don't want my mum having such bad feelings towards me potentially going into dementia further with those feeling then becoming hostile furthes, aggressive and agitated towards and around me. Afraid of me in her confused mind thinkingbl'm there to hust her. It it soul destroying my bond with my mum had always been so very very strong. It is making me feel suicidal but had no choice but to step in and get me help as it was only me that could step in as dad was not going to do anything and allow me to just decline further until they both ended up eventually very ill in hospital. Mum is treating me as if what l had to do is vindictive, hateful and has told me, me speaking to a gp isn't love or care. Problem we have is Mum doesn't believe she has any issues, mum thinks she is perfectly well and that it was all of us causing her problems making her ill. In the same sentence mum claims not to be ill she is also confirming she has been/was/is due to us she claims but denies she is ill in that same sentence at its end. Mum keeps saying things to me of the following - Oh it's you! If she see's me unexpectedly. And maybe you are the one who needs a brain scan not me! Maybe you are the one whi has dementia! I don't tell my mum she has dementia, but mum goes about telling people that's what l'm telling her she has and told my son in front of my dad that l was going about telling people she has dementia which l am not doing as that is cruel and l just wouldn't do that, especially not without a diagnosis yet and with a diagnosis would only ever tell people who most certainly needed to know, such as another gp not seen before, paramedic, dentist, police and anyone in a&e treating mum if fell ill or had another fall or injured herself another way and l or dad took to hospital not a paramedic in ambulance. Mum's gp which is also mine listed me down as a carer for mum but now l am being ostracised by them all as if l've done wrong and am making things up because Dad keeps telling me they need help yet when they have been offered it they have refused it and both my parents because mum has a little comprehension left but it isn't rational comprehension are both great at putting on a show of everything being absolutely normal. They then collaspe with stress, exhaustion and in confusion when home or visitor to check if they need help or not has gone. My dad also has memory issues. Dad was supposed to come to my house yesterday and also today but hasn't turned up, he explained after me waiting in all day yesterday and finally calling to check everything ok why he never turned up but otherwise l wouldn't have known why as no phone call to tell me and looks like same again today. I understand dad run off his feet caring for mum and worrying about his ofn health plus loads more he has to do, but a phone call takes less thrn a minute and stops me worrying about them both too. Dad had seizures end of summer 2020 on anti seizure medication couldn't drive for 6 months and l obviously have my concerns he may nave had more and not told us as that is what my dad is like, or that he will have more. So when they don't answer phone or dad doesn't alert me about him not coming over l get really worried especially when the phone just keeps ringing out. I have no support, my sibling lives thousands of miles away in canada fe ase close but l haven't seen her in over 16 years. Mum also hurtfully screams and yells at me, comes to find me in their home "my childhood/young adult home" to try tear me to shreds in front of my son but never in front of my dad. Mum tells me l used to be your mum but l'm not anymore! Mum recently accused me of breaking into their house in the night. I was home unwell and wouldn't do that. Have always since older teens had a key for my parents house as it was always l was told my home too and could just walk in. That's how we were as a family. And how my dad still is with me. Mum ignores me if l speak to her, yet happily ate the pancakes l made for my parents and my son on pancake day having only a few days before been shouting at me in a supermarket with my dad accusing me of breaking into their house in the night and having done something to my dad. It is just awful and making me ill.

[crafty_grannie in reply to Mijmijkey74]

Oh my dear, you are certainly trying to deal with too much. It is so important that you get help as soon as you can. I’m surprised that your doctor hasn’t followed up with your mum. Your father is not correct in saying that nothing can be done for dementia. There is no cure and, yes, it will continue to get worse, but there is a lot that can be done to reduce the person’s stress and agitation and help make things calmer for her and for everyone . Unless we have personally come in contact with someone who has dementia, most of us really have no idea of what it is and how to deal with it and invariably make things worse. I would suggest you get on to her doctor ASAP to see your mother and, if he decides it’s appropriate, refer her to a specialist. It depends where you live, but here in Queensland, Australia, there is a lot of support available. If you can find someone to talk to in Dementia Support, they will be able to help you get a better understanding of what is involved, and will probably also direct you to some support. Just a couple of tips from my own experience, Do not directly contradict what a person says. It is likely to confuse them and make them more upset. You can agree with them, suggest talking about it later, make a cup of tea, anything to calmly distract them. - and they probably won’t remember in a little while. If everyone is upset, they may not remember what it was about, but they will probably retain the upset feelings. Don’t try to explain or convince. They may not follow you and again, get confused and/or frustrated. Try to stay calm, smile, nod, agree, listen and, very importantly, try to be respectful and not confrontational.

Perhaps you have some good family friends who can support you. Get online and see what is available in your area. I hope you are able to access some support soon. All the best.

My apologies, everyone, I have forgotten how to do a personal message or a personal reply and this is very long. I did know but have forgotten. Would someone kindly remind me. Thank you.

Many thanks for your patience.

Mary

[PMRpro Ambassador in reply to crafty_grannie]

Click on the name or avatar of the person you want to reply to and it takes you to their profile page where is a blue box at the top right saying Message. Click on that and it brings up a page with a form to write your message and already addressed to that person. You can add other recipients if you want a multiple conversation but you don't have to.

[crafty_grannie in reply to PMRpro]

Many thanks. I am having quite a few memory issues so I will copy it where I can refer to it easily. 😊

[Mijmijkey74 in reply to PMRpro]

Thank you for your reply, it helped just to be understood and my apologies for such lengthy messages with all of my unintentional grammatical errors/mistakes and the frequent me's meant to be Mum.

The doctor/gp who is a doctor/gp I have seen before but who is not my own doctor/gp nor Mum's is involved as are the memory clinic and social services, but none of it is helping, and Mum is just becoming more and more nasty towards me and irate. Yesterday Mum passed out and Dad had to be told by a social services worker who just happened to have phoned and spoken to mum not long before she passed out who was wanting to speak to dad but he wasn't there at the time so dad called mum back not long after and then discovered from dad about mum having passed out and that he had helped her into bed as she was not well at all but had left her in bed not calling ambulance or doctor out. Social worker told dad to call ambulance and social worker told dad she was going to call me which she did to tell me about mum and asking me to call ambulance as she didn't think dad would call one. I said no l wouldn't call ambulance as one turning up at my parents out of the blue would make mum panic and become further unwell. Social worker srid she would call dad again to make sure he had called ambulance. Not long after my son called me from my parents house to tell me dad had called an ambulance and they had taken her to hospital. Mum wasn't kept in. I rang later as dad never called me to let me know as l had requested he did if mum kept in hospital or came home so was shocked when mum answered and was instantly horrible with me telling me almost all her health problems are because of me, that they are my fault. That l am to blame. I am not to blame and her behaviour and words just hateful and nasty. It is not possible to agree with anything mum says as it is all so vindictive untrue and hateful and deeply hurtful and hurting me when l already am battling depression, have my own significant health issues, love my mum and have only tried my best to get mum the treatment she needs and the support both my parents need. I have no support, my parents were my friends and support when needed, my few friends her unsupportive never see in person, don't contact me really as busy with their own families and issues in life and don't know what to do to help support me otherthan words cast in messages online asking how l am and if l tell them, they get sad and don't know what to do. I used to live abroad for several years 13 years ago and my best friends are in those countries who l haven't seen since having to return to my home country of England, UK. I have no support here, nobody thinks to ofter me support because of what l'm dealing with daily from my parents alone, no other family for support. Nobody at all. I am completely alone. And you say agree with what my mum says, well if the horrible nasty vindictive things she is saying were true and not about me and aimed at me so untruthfully hurtfully then maybe l could agree with Mum, but if l agree with all the horrendously vindictive nasty things she's saying about me mum will remember l agreed with her about her nasty statements about me and never ever let them go because she is so twisted now in her depraved mind towards me for having to step in to get her seen by a gp/doctor. Mum is so wound up saying what l did was illegal because her brother "my uncle" recently told her me speaking to a gp/doctor without her permission is illegal. Mum is fixated on that now. And shouting at me that what l did was illegal, l broke the law etc etc. It is not possible for any calm as Mum starts arguements and problems consistantly every time she sees me, and l have ofter to make her a cup of tea many times but she refuses it. And won't stay in a room l'm in without shouting at me. This is my Mum who only last August was hugging me and kissing me still, but then when dad was in hospital because of his seizures Mum just changed completely. I'm sorry to read and know you have memory issues too. Xx

Take good care. Xx

[Elephantstraw in reply to Mijmijkey74]

I am so sorry you have had these bad experiences, the anger and resentment comes from the disease so that it what is causing these outbursts, not your Mum. In such a close relationship her brain knows what buttons to press, but she would not hurt you or offend you for the world; it is this extremely difficult disease and if you are unwell it makes it so difficult to cope with the hurtful comments. Don't take them on board, I know that is so hard. Can you phone anyone to off load your distress as it can get to you if you let it. Get a good doctor, use online forums, above all it's not your Mum's fault. Be gentle with yourself, accept help whenever offered, get respite and ask your distant family for input. Go with the flow, get some "me time", and all best wishes and thoughts. God bless you.

[Mijmijkey74 in reply to Elephantstraw]

Thank you, but there is no family support and no online or friend or gp support available. Nobody cares, my parents have in their messed up minds turned people against me telling them lies about me I find so deeply hurtful, upsetting and offended by that they have believed knowing me since early childhood. There is no support available, my parents put on a good show for their audiences/visitors, those people don't see the truth, the shocking truth, or if they do see are choosing to ignored because it is to much for them to handle and they know my parents will deny everything if approached as that is what they are good at doing. Hiding the truth, not being honest and casting blame elsewhere.

[Arniestal]

I don't know yet if my husband has dementia, he has a online memory assessment on the 8th of April. But I do know I'm not coping, I had depression after losing my mum 4 years ago tomorrow. It never completely went as no one to really help. This lock down has stopped me seeing my small granddaughter who was the only light in this black tunnel. Also my only daughter and I are now very distant. But I feel its my husband who is bringing me down. I've a whole list of things and the latest now is I just realised he seems unable to react, or comprehend I need to talk to someone about it. I'm in England.

[Mijmijkey74 in reply to Arniestal]

I'm sorry you are having such a rough time. You know my Mum reacts angrily, but her body movements and facial expressions are strange. Mum just doesnt react to touch or show facial expressions. Even when angry and irate her face blank it is just shouting. And no body movements like a normal person. Walks without body moving. I don't know if that is similar to what you mean about your husband. Mum is just blank, if she has an itch on her nose it is a very strange slow uncoordinated movement to scratch it as if someone standing behind her and moving/controlling her arms blindly to try aim on target and scratch the itch. A fly could land on her face and Mum wouldn't notice it hopping all over her face, or buzzing around her face. No reaction, blank face. It could land by Mum's eye no blink, no recoil, no brushing it away, nothing, no reaction, but if l hold Mum's hand she strokes with her thumb the top my hand back but it is an unconscious reaction because Mum isn't even aware l have hold of her hand stroking it. Much love and please do not despair what is happening to our loved ones is heart breaking, they still love us somewhere inside of them, still need us, but people forget we need support as lone individuals trying to manage and cope alone just as equally. Xx