Severe burn out . How to transition from respite care at care home to longterm care

Mum’s Drudge

Registered User
May 16, 2021
11
0
Hello.
I’ve been my Mum’s sole live-in carer for over three years - I live in her house . Mum is 92 and has mixed dementia but presents extremely well and coherently to social workers etc especially since being put on Donepezil and Memantine.
I have struggled from day one as our relationship is complex and difficult - there’s also a big age gap as I’m 50.
I’ve experienced burn out several times but this summer it has been severe and resulted in me needing Mum to have replacement respite care in June , for two weeks, only for her to return to the same care home at the end of July as I’m not well enough now to look after her. She luckily agreed to go back to this care home which is the best and nicest she has ever stayed in. She has never withdrawn into herself while at this home unlike previous respite stay experiences which were really unsatisfactory and very upsetting for me as I was riddled with guilt.
Mum suffers from depression normally while under my care at home - this lifted within a week of staying at her new seaside care home and the same has happened on this second stay there - her depression symptoms had actually returned within a few days of being back home with me in July . That’s hard to see as I of course feel it’s my fault that she’s so depressed even though I know it is part of her illness.
She is physically fitter at the home as she gets more exercise there and has to walk (with her rollator) further along corridors to the fab sitting rooms which have either sea or mountain views and she walks a good distance also to the dining room. It’s a small home and they don’t take people with the worst later stages of dementia so the other residents are not all asleep all day long like at other homes . Mum was assessed at home by the care home manager which was amazing and she was thankfully accepted as suitable to stay there . I know she would have a better quality of life there and more stimulation than she would have staying here at home. She of course believes home is best so I’m struggling to help her to realise that she is better where she is now and that I can no longer care for her as I’ve been doing. I am overwhelmed by stress , anxiety and guilt and I already suffered from complex PTSD problems before I became Mum’s carer so my life and symptoms are now almost impossible to manage with the added daily stress and worry of caring for Mum and everything has become “all about Mum” . I have forgotten who I used to be and am now very disconnected from anything outside of my “caring” role at home. That’s in inverted commas because I don’t feel I “care” properly at all and feel I am a failure for not being able to keep going.
I can see that if she would agree to stay at this home , I could recover hopefully quite a bit and then have energy again to be able to take her out and maybe even enjoy some time together rather than it always being so strained with my visits making her annoyed whilst giving me full blown panic attacks every time I have to go and see her. There is no other family support . I’m on my own and have ended up without any hope of social life with friends for a break from this, as they’ve all slowly disappeared . I know this isolation happens to many many people in this position. I feel however that I should be “sucking it up” and just continuing on and not being so selfish to want to find some sort of life for myself again but my body and mind are now clearly screaming at me to stop and realise I’m really harming my health and it is stupid to keep pushing on and expecting to be able to go back to having Mum at home whilst she is getting further into the much later late stages of dementia. I’m in severe constant pain now throughout my body - I have arthritis and fibromyalgia but right now this is off the charts type of pain and my mobility isn’t good at all. My mental health is fairly shattered - anxiety is unbearable , mood is either rock bottom or I’m having manic episodes triggered by the stress and not sleeping for days and not eating. I’ve told my Mum’s care manager about this but I still think she would send Mum home again if Mum says a definite “no!!” to any suggestion about respite time turning into longterm care.
There is no easy answer . Many are in far worse situations . Mum is safe where she is , the care is excellent and the home is amazing . I don’t want her to lose the room in this home as an emergency situation down the road, if she came home, would mean she could be placed into any of the really awful alternatives . She’s so lucky compared to others. I need to find a way to stay strong enough to be able to say “Mum I can’t do this anymore and the care here at this lovely care home is what you need right now as I can’t provide enough for you back at home” …or something along those lines .
I think of all the social care hurdles and obstacles and the excruciating battle for diagnosis that I’ve been through already and the horrendous resistance from Mum in the early days and the battles with her at home about using a rollator etc and the rough days of her aggressive behaviour etc before the meds and I need to realise how far I’ve come and how much better she is now that I’ve got the doctors and social care team to support her properly . But….. I still feel my own life is over and I’ve nothing more to give and the guilt of me having now seemingly given up on Mum and wanting to say “I’m out” is horrendous……
 

DreamsAreReal

Registered User
Oct 17, 2015
476
0
Hello and welcome @mum's Drudge

You've said a lot about support for your Mum but not much about you. I was feeling quite similar to you a few years ago and I was lucky to have a great GP who sent me for therapy. Are you getting any treatment for your depression & PTSD? And your chronic pain conditions? Does your GP know you feel this bad? Sounds to me like you're more in need of care than Mum!

It's horrible when you get to that stage of feeling like you've got no life left (except skivvying). I used to say I could endure it, if only I had an end date! I could see a future of nothing but worrying about and looking after Mum. Like you said, everything's about Mum all the time. Followed by the guilt.

You really need to focus on your health now. Get your GP on-side and tell him/her you're burnt out and can't care for Mum anymore. Have SS done a carers assessment recently? I can't post anymore right now, but I'll be back later.

You've got nothing to feel guilty about - your life and health are just as important as mum's! You've more than done your bit - but right now you're not well enough to do any more. xx
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
You should Not be just "sucking it all up" and carrying on. You have a responsibility to look after yourself...which means stepping back, giving yourself an enforced break, so that you actually get relaxed sufficiently to be able to think this thing out clearly. I think you already know you are giving too much of yourself, emotionally and physically. You need time to think about what you are going to do about that.
 

Sarasa

Volunteer Host
Apr 13, 2018
7,195
0
Nottinghamshire
Hi @mum's Drudge, I'm so sorry that caring for your mum has really taken it out on you. It sounds like she is now in a care home that can meet her needs, so now is the time to take care of you. I agree that making an appointment with your GP would be a good start but I wonder if it might also help if you phoned up the Support on 0333 150 3456 or emailed them at dementia.connect@alzheimers.org.uk for a chat.
This is a very friendly and supportive site and you’ll always find someone here to listen.
 

imthedaughter

Registered User
Apr 3, 2019
944
0
Practically speaking, can you just extend the respite? Certainly when I moved dad into care, I was unsure as to whether it would be a permanent placement, partly because the finances were so up in the and partly because I was not sure if he really needed that level of care at that point. But once we sorted that out and was assessed and he had settled, the home were happy for him to stay, and it became his home. I didn't have to have a big conversation with him about it, and he did spend a lot of time in the beginning talking about buying a flat to move into, and knowing he couldn't manage that or afford it I agreed it was a good idea. Obviously nothing came of it.
What is clear is that you are too unwell to care for her, and it appears that she is currently in a place where she is well-cared for. I think it's clear that she needs to stay there, and you can say it's 'for now' and see how it goes.
 

Mum’s Drudge

Registered User
May 16, 2021
11
0
Thank you to everyone here who has been so kind and responded to what I have written.
I have now got a good GP , thank you for asking . He’s very compassionate and understanding . My health issues have been very longterm so have had quite a bit of help along the way but it has been hard to get more help recently because of what I have received before and some doctors just dismiss female mental health problems as pure neurotic behaviour . The waiting lists are also years and years long where I live so it has been hard to get to see anybody new recently . However , I have hung on for what was on offer and I start DBT this autumn hopefully but that’s been about 8years in the pipeline and a lot has happened and changed in that time. DBT will help with things like distress management and that would then prepare me for any trauma therapy in the future but that is being withheld as a possible treatment option until I complete the DBT treatment - there is no quick fix I’m sad to say. Things perhaps had to reach this current physical amd mental health crisis point before either the medical professionals or myself took real notice that things are most definitely not at all “right” with me and that I need to think about my own health rather than 100% on Mum. I’m having a new checkup with the nice GP this week and have my psychiatrist (who reviews me every four months) now informed of the new developments so I just need to be a patient patient and try and cope with the further waiting until I can get to treatment and then start to make any progress . Realising now that I can’t do that and do 24hr care for Mum as well.
I think yes , seeing Mum’s stay as continual “extensions ” of the respite arrangement is how , hopefully , the care managers will approach Mum’s situation . I have made it very clear that they need to tread very sensitively with Mum and not to use words like “permanent” which would freak her out and cause unnecessary extra distress. I was with Mum this afternoon on a mini outing for “tea and ice cream by the sea”, with some other residents from the care home and she not only surprised me by agreeing to participate but she actually really enjoyed it. I felt so much easier today when I left her as she was truly feeling happy for a change. Hopefully there will be more days like this to balance out the much harder ones.
I have been in touch with the Alzheimers connect service - thanks again for thinking of that as an option for me - they have been a great support when I have reached out for help during periods of burnout or just when I’ve felt totally lost by what was happening with Mum . I have had good support also from time to time from my local Alzheimer’s support workers and would not have made it this far without their help . I miss the carers meetings which we had before the pandemic and that’s why I reached out on this forum as it truly is the best comfort to know so many others are going through very similar situations and only we know exactly what this caring role entails . There are so many people suffering from dementia but it is too often so difficult to find anyone else who really understands . Social workers can be great but can also just possibly be so inundated that they probably are suffering severely from
compassion fatigue so it often feels like asking for help or understanding falls on deaf ears.
Thanks for all the supportive words and suggestions - I really appreciate it all.
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
I am so pleased to hear that you are are reflecting so sensibly on your own health. You sound so insightful and wise actually. Maybe that comes from the hardship you have experienced. I suffer chronic pain which has gone on for 7 years. A recent NHS Pain Management 6 week course allowed to fully accept that my emotions and the difficulties I have been encountering are all wrapped up in my pain signals. Difficult emotional experiences in life, past or more recent, exacerbate the pain that someone might feel. My mother has been one of my biggest difficulties for a number of years, and before, and this has been compounded by other difficult family relations. I feel like I am currently entering the next stage with my mother. It looks highly likely that she will move into some sort of care home in the near future.
I am so glad to hear that you had a nice day with your mother at the seaside and that you have built a good experience there. I hope it continues for you(and her).
 

Frank24

Registered User
Feb 13, 2018
420
0
Hi ladies… as a daughter I am at the other end of this journey as lost Mum in May this year but I was brought to the brink emotionally and physically be the stress of being sole family member involved in my mums care and decision making for her future. I wanted to say that not all care home are a bad thing. Something I really struggled with at the time. Now out of the other side I appreciate all that the staff there did for her. Truly things i wouldn’t have been capable of. ESP in her final days. Take care xx It’s a hard journey with a sad end xx
 

T1000

Registered User
Feb 3, 2022
204
0
Very sorry to hear you are going through this OP. I am also 3 years in and feel your pain, think sometimes I have been depressed but only a little and I am lucky I do not have fibromyalgia etc, I have family with it and it sounds utterly awful to cope with plus your mums care. You do not mention if you have POA but if you do it means you would be able to make these decisions for your mum. If not in place can you arrange this? Also can your mum afford ongoing care or would it be state funded?
Def call the care home to see if you can extend for now whilst you think about things.

My own mum is coming back to us from a week respite, this one she enjoyed and was able to still be independent, it's been great having the home to ourselves too. It does make me wonder how much longer we can do it, as she will no doubt start to get progressively worse.
 

Mum’s Drudge

Registered User
May 16, 2021
11
0
Hi ladies… as a daughter I am at the other end of this journey as lost Mum in May this year but I was brought to the brink emotionally and physically be the stress of being sole family member involved in my mums care and decision making for her future. I wanted to say that not all care home are a bad thing. Something I really struggled with at the time. Now out of the other side I appreciate all that the staff there did for her. Truly things i wouldn’t have been capable of. ESP in her final days. Take care xx It’s a hard journey with a sad end xx
Oh I truly empathise with what you are going through. I think the grieving process starts prematurely while looking after a relative with dementia and I can really appreciate that grief after that person has died is no doubt very complicated indeed and there will be so many emotions still to battle with. It’s just such a sorrowful experience to have to go through . I have a very estranged sister who is not involved at all with Mum’s care but who was recently in touch and seems to believe that once Mum
has died there will be no other things to worry about other than me quickly sorting out what she inherits - ie: half the house which currently is my only home! It shocked me how somebody , especially a daughter of someone so ill, could be so cold and mercenary and not even realise how totally emotionally shattering it is , being with somebody whose brain is slowly disappearing and whose personality has become so altered and has also been disappearing in front of their eyes. No matter how complicated the mother - daughter relationship may have been over the years , it is so completely heartbreaking to witness a person’s life , interests and abilities shrinking away week by week and the grief we all feel as carers is most definitely real and we do need to find people who truly understand this , to help us through it all as well as during the time after our caring role comes to its inevitable conclusion . You can’t just wake up the next day and say “well that’s over now , phew what a relief , I’ll pick up the pieces of my own shattered life now and it’ll be easy peasy to move on” - you’re trying to cope with the immense loss of someone who you’ve thought about and cared for 24hrs every day , even if they had moved to a care home , that emotional stress and worry is still with you all the time and you cannot switch it off . Your brain and whole body need a great deal of time and support to cope with the loss and trying to adjust again to a life of your own, without that person who became your whole world . I do hope so much “Frank24” that you have enough support and understanding caring people around you, to help you through this extremely difficult period of your life . I hope you will have many happy times to come in the future where you will be able to heal emotionally and find your physical strength and energy improving again.
 

Mum’s Drudge

Registered User
May 16, 2021
11
0
Very sorry to hear you are going through this OP. I am also 3 years in and feel your pain, think sometimes I have been depressed but only a little and I am lucky I do not have fibromyalgia etc, I have family with it and it sounds utterly awful to cope with plus your mums care. You do not mention if you have POA but if you do it means you would be able to make these decisions for your mum. If not in place can you arrange this? Also can your mum afford ongoing care or would it be state funded?
Def call the care home to see if you can extend for now whilst you think about things.

My own mum is coming back to us from a week respite, this one she enjoyed and was able to still be independent, it's been great having the home to ourselves too. It does make me wonder how much longer we can do it, as she will no doubt start to get progressively worse.
Hi !

I have the Enduring power of attorney for my Mum but it only means she has been assessed as being incapable of making decisions regarding her financial affairs . My Mum still has the legal right to decline any suggestion about moving permanently into a care home . If Mum says “no!” then she legally still has the right to come home unless she was at serious risk by doing so and these days “serious risk” means the most extreme of circumstances and her actually risking imminent death by living in her own home . The rules are quite scary but at the same time I put myself into her shoes and would also not want anyone “putting me in a home” with me feeling I had lost all my rights . I can see where the social care system is coming from but it is also not realistic. Mum would still be assessed as being capable to live at home with a care package which is ridiculous but it’s sadly true. I have been told that if Mum was to come home and I’m still not well enough to cope, the only way I could force the social workers hands would be for me to move out !! I have no savings at all and can’t afford to pay a removal firm nevermind a rental deposit so this is not a practical solution nor would I be able to just walk away and leave Mum to cope with just four calls of approximately 15minutes of a carer every day who is only allowed to use a kettle and a microwave, is not allowed to do any housework but at a push may be able to wash my Mum once or twice a week. I would never walk away anyway .
I’m hoping when Mum’s care managers see her at the new care home, with me , in a couple of weeks’ time, they will see how frail she has become and will be more understanding of what her needs are now , no matter how brilliantly she can “present” to anybody who she perceives as a possible threat to her independence etc.
I have gone through the means assessment for Mum’s social care funding and she is part funded for staying at a care home and her house in a legal trust arrangement . I have all the legal “t’s” crossed and “i’s” dotted I think - the Alzheimer’s Society CRiSp course have been very helpful and I’ve got a very good family solicitor who specialises in elderly care type of situations. I have however been in touch with him to double check about any rights I might have as a carer who has become so unwell although I’m pretty sure it’s ground I’ve covered with him before - I just can’t remember !!!!

I’m glad you have all had some beneficial respite time - it is hard to readjust afterwards but I hope that your Mum’s pleasant experience this time will mean she will be happy to go for other respite breaks regularly to help you keep your own strength and wellbeing going. Respite stays at care homes also helped me to work out what I felt was good and what was bad about different ones and that really helped me find one that is more suitable and meets Mum’s needs properly and I can see the difference in her when it’s somewhere that stimulates her rather than makes her disappear into herself further.
I’m just trying to take it day by day at the moment to help me reduce my anxiety about any plans for longterm care away from Mum’s own home - I’m now into the third week without her at home and it’s a really tough adjustment and I think dealing with the feelings of guilt must be the hardest for us all.
 

Mum’s Drudge

Registered User
May 16, 2021
11
0
I am so pleased to hear that you are are reflecting so sensibly on your own health. You sound so insightful and wise actually. Maybe that comes from the hardship you have experienced. I suffer chronic pain which has gone on for 7 years. A recent NHS Pain Management 6 week course allowed to fully accept that my emotions and the difficulties I have been encountering are all wrapped up in my pain signals. Difficult emotional experiences in life, past or more recent, exacerbate the pain that someone might feel. My mother has been one of my biggest difficulties for a number of years, and before, and this has been compounded by other difficult family relations. I feel like I am currently entering the next stage with my mother. It looks highly likely that she will move into some sort of care home in the near future.
I am so glad to hear that you had a nice day with your mother at the seaside and that you have built a good experience there. I hope it continues for you(and her).
Oh my! You could be me ! So much of this resonates!! Especially the “difficult family relations part” - good grief that really is the worst unhelpful extra stress isn’t it?!
Pain management courses can indeed be very very useful - the Versus Arthritis organisation runs excellent 6week courses too . Sometimes they run as part of a NHS support package through GP surgeries. I like Versus Arthritis in particular because the courses are facilitated by people who actually have chronic pain themselves so it is in no way condescending and for once we as participants who are fed up with our pain and our lives , are not being preached at , as can happen with some physio-led pain management sessions . It’s hard to be told to get up and do exercises and be given cognitive behavioural advice by someone perhaps only in their twenties who could probably run a couple of marathons a week and who has maybe only completed one module of CBT at college! Sounds harsh and I’m sure they’re all not like that but yes, I’ve been through that . Versus Arthritis was a breath of fresh air although their name is misleading as you don’t need to actually have arthritis to attend their pain management courses !
It is also great if you can find a physio etc that will really listen and not just put every pain or creaking joint down to stress. I was all too aware of my awful pain and emotional stress and trauma being linked tightly together but I struggled to get across to many health professionals that having chronic pain does not mean you can’t also have an acute joint or spinal issues that won’t go away with meditation or gentle movement exercises or talking therapy . I’m not bashing any of that as they are all excellent tools for getting through each day.
As a carer you can feel and look worn out and become terribly upset at the drop of a hat in a consultation room. So, it’s too easy for some newly-qualified physios or doctors to pigeon hole us as neurotic and we really have to dig deep to find the strength to say, for example, “my shoulder doesn’t work , I can’t dress myself and the pain is severe and this is NEW and ACUTE not chronic and I have really injured something !!!”. Not even being physically assessed , not one finger being used to feel if anything was not working properly but just seen as stressed out only adds to the stress which keeps the chronic pain ticking away very happily in the background. Being ignored and referred to yet another sit-in-a-circle pain management course (after me saying that I’d been having CBT over a ten year period and was aware of how my stress affects my pain levels ) was this time not going to fix what turned out to be a nasty torn rotator cuff injury which needed two steroid injections and a year of intensive physio before it healed . As you can tell I still haven’t got over that !!! Crikey!! The particular young physio who refused to examine me etc was reported to her manager and I did get a full apology and I just hope she will see the whole patient in future , will listen properly and not just be motivated by filling chairs in her own pain management course when there are people who actually need to attend one for their chronic pain issues . It’s hard enough to get help but if the professionals don’t listen properly it makes life even more exasperating! I’m ranting ! Apologies !
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
Oh my! You could be me ! So much of this resonates!! Especially the “difficult family relations part” - good grief that really is the worst unhelpful extra stress isn’t it?!
Pain management courses can indeed be very very useful - the Versus Arthritis organisation runs excellent 6week courses too . Sometimes they run as part of a NHS support package through GP surgeries. I like Versus Arthritis in particular because the courses are facilitated by people who actually have chronic pain themselves so it is in no way condescending and for once we as participants who are fed up with our pain and our lives , are not being preached at , as can happen with some physio-led pain management sessions . It’s hard to be told to get up and do exercises and be given cognitive behavioural advice by someone perhaps only in their twenties who could probably run a couple of marathons a week and who has maybe only completed one module of CBT at college! Sounds harsh and I’m sure they’re all not like that but yes, I’ve been through that . Versus Arthritis was a breath of fresh air although their name is misleading as you don’t need to actually have arthritis to attend their pain management courses !
It is also great if you can find a physio etc that will really listen and not just put every pain or creaking joint down to stress. I was all too aware of my awful pain and emotional stress and trauma being linked tightly together but I struggled to get across to many health professionals that having chronic pain does not mean you can’t also have an acute joint or spinal issues that won’t go away with meditation or gentle movement exercises or talking therapy . I’m not bashing any of that as they are all excellent tools for getting through each day.
As a carer you can feel and look worn out and become terribly upset at the drop of a hat in a consultation room. So, it’s too easy for some newly-qualified physios or doctors to pigeon hole us as neurotic and we really have to dig deep to find the strength to say, for example, “my shoulder doesn’t work , I can’t dress myself and the pain is severe and this is NEW and ACUTE not chronic and I have really injured something !!!”. Not even being physically assessed , not one finger being used to feel if anything was not working properly but just seen as stressed out only adds to the stress which keeps the chronic pain ticking away very happily in the background. Being ignored and referred to yet another sit-in-a-circle pain management course (after me saying that I’d been having CBT over a ten year period and was aware of how my stress affects my pain levels ) was this time not going to fix what turned out to be a nasty torn rotator cuff injury which needed two steroid injections and a year of intensive physio before it healed . As you can tell I still haven’t got over that !!! Crikey!! The particular young physio who refused to examine me etc was reported to her manager and I did get a full apology and I just hope she will see the whole patient in future , will listen properly and not just be motivated by filling chairs in her own pain management course when there are people who actually need to attend one for their chronic pain issues . It’s hard enough to get help but if the professionals don’t listen properly it makes life even more exasperating! I’m ranting ! Apologies !
That all sounds stressful and painful. I have suffered about 7 years with chronic pain which doesn't even have a proper diagnosis but have been to so many physios privately, then several consultants. I can't work out whether or not my problem originates from my foot, my back or the abdominal surgery. I went on an NHS 6 week course on pain management -,psychotherapy, OT intervention and whole body physio. It never promised a cure and I didn't get one but I did recognise that my anxiety about my undiagnosed pain, anxiety also about anything - including my mother and my critical, "invisible" brother was/is feeding my pain.Also the "baggage" we bring from our past serves to make us more susceptible. Self compassion is so important and we perpetuate chronic pain and make it spread by being an enemy to ourselves. It is good that you got some of that acute pain sorted though.
 

Muttimuggle

Registered User
Dec 28, 2021
710
0
Oh my! You could be me ! So much of this resonates!! Especially the “difficult family relations part” - good grief that really is the worst unhelpful extra stress isn’t it?!
Pain management courses can indeed be very very useful - the Versus Arthritis organisation runs excellent 6week courses too . Sometimes they run as part of a NHS support package through GP surgeries. I like Versus Arthritis in particular because the courses are facilitated by people who actually have chronic pain themselves so it is in no way condescending and for once we as participants who are fed up with our pain and our lives , are not being preached at , as can happen with some physio-led pain management sessions . It’s hard to be told to get up and do exercises and be given cognitive behavioural advice by someone perhaps only in their twenties who could probably run a couple of marathons a week and who has maybe only completed one module of CBT at college! Sounds harsh and I’m sure they’re all not like that but yes, I’ve been through that . Versus Arthritis was a breath of fresh air although their name is misleading as you don’t need to actually have arthritis to attend their pain management courses !
It is also great if you can find a physio etc that will really listen and not just put every pain or creaking joint down to stress. I was all too aware of my awful pain and emotional stress and trauma being linked tightly together but I struggled to get across to many health professionals that having chronic pain does not mean you can’t also have an acute joint or spinal issues that won’t go away with meditation or gentle movement exercises or talking therapy . I’m not bashing any of that as they are all excellent tools for getting through each day.
As a carer you can feel and look worn out and become terribly upset at the drop of a hat in a consultation room. So, it’s too easy for some newly-qualified physios or doctors to pigeon hole us as neurotic and we really have to dig deep to find the strength to say, for example, “my shoulder doesn’t work , I can’t dress myself and the pain is severe and this is NEW and ACUTE not chronic and I have really injured something !!!”. Not even being physically assessed , not one finger being used to feel if anything was not working properly but just seen as stressed out only adds to the stress which keeps the chronic pain ticking away very happily in the background. Being ignored and referred to yet another sit-in-a-circle pain management course (after me saying that I’d been having CBT over a ten year period and was aware of how my stress affects my pain levels ) was this time not going to fix what turned out to be a nasty torn rotator cuff injury which needed two steroid injections and a year of intensive physio before it healed . As you can tell I still haven’t got over that !!! Crikey!! The particular young physio who refused to examine me etc was reported to her manager and I did get a full apology and I just hope she will see the whole patient in future , will listen properly and not just be motivated by filling chairs in her own pain management course when there are people who actually need to attend one for their chronic pain issues . It’s hard enough to get help but if the professionals don’t listen properly it makes life even more exasperating! I’m ranting ! Apologies !
PS. I really like weareundefeatable.co.uk which, is, I think, a new government initiative for people with anything which is disabling. It is getting advertised also on TV.
 

Frank24

Registered User
Feb 13, 2018
420
0
Oh I truly empathise with what you are going through. I think the grieving process starts prematurely while looking after a relative with dementia and I can really appreciate that grief after that person has died is no doubt very complicated indeed and there will be so many emotions still to battle with. It’s just such a sorrowful experience to have to go through . I have a very estranged sister who is not involved at all with Mum’s care but who was recently in touch and seems to believe that once Mum
has died there will be no other things to worry about other than me quickly sorting out what she inherits - ie: half the house which currently is my only home! It shocked me how somebody , especially a daughter of someone so ill, could be so cold and mercenary and not even realise how totally emotionally shattering it is , being with somebody whose brain is slowly disappearing and whose personality has become so altered and has also been disappearing in front of their eyes. No matter how complicated the mother - daughter relationship may have been over the years , it is so completely heartbreaking to witness a person’s life , interests and abilities shrinking away week by week and the grief we all feel as carers is most definitely real and we do need to find people who truly understand this , to help us through it all as well as during the time after our caring role comes to its inevitable conclusion . You can’t just wake up the next day and say “well that’s over now , phew what a relief , I’ll pick up the pieces of my own shattered life now and it’ll be easy peasy to move on” - you’re trying to cope with the immense loss of someone who you’ve thought about and cared for 24hrs every day , even if they had moved to a care home , that emotional stress and worry is still with you all the time and you cannot switch it off . Your brain and whole body need a great deal of time and support to cope with the loss and trying to adjust again to a life of your own, without that person who became your whole world . I do hope so much “Frank24” that you have enough support and understanding caring people around you, to help you through this extremely difficult period of your life . I hope you will have many happy times to come in the future where you will be able to heal emotionally and find your physical strength and energy improving again.
Thanks indeed picking up the pieces of your life is hard xx
 

Graybiker

Registered User
Oct 3, 2017
326
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County Durham
Hi ladies… as a daughter I am at the other end of this journey as lost Mum in May this year but I was brought to the brink emotionally and physically be the stress of being sole family member involved in my mums care and decision making for her future. I wanted to say that not all care home are a bad thing. Something I really struggled with at the time. Now out of the other side I appreciate all that the staff there did for her. Truly things i wouldn’t have been capable of. ESP in her final days. Take care xx It’s a hard journey with a sad end xx
I was in a very similar situation, though dad still here but showing early signs of dementia also. Mam thrived in the care home, loved the company. They could offer much more than dad & I could. Yes, not all care homes are a bad thing, some are very good. Can’t thank the staff there enough for all they did for her.
You take care of yourself xx