• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Carer's strategies for diffusing frustration

Arty-girl

Registered User
Jun 29, 2020
14
Dear @Arty-girl

A long reply but writing it down helps me to reaffirm what I agreed with myself gradually over the last three years. As mum’s Dementia has developed and my caring role got more demanding, I noticed my underlying frustration was growing, still does on bad days. I realised I needed to make peace with myself, lay down certain boundaries in my mind, accept certain realities, demolish certain preconceived ideas. Build my own tool box of useful items in the emotional battles of the caring role. Honest and open account which might offend some, but might help at least one other person, which would make the exercise worthwhile. So in no particular order.

1) The notion of “living well with Dementia” is a fairy tale. It is mostly told by non carers so they do not have to feel bad about looking the other way. The more you buy into it the more pain you get. Bluntly the role of the carer is to try their best to take the rough edges off the Dementia experience for their loved one, in the process trying not to get to badly emotionally cut up themselves. It is a battle of growing intensity, which the carer is destined to lose. A harsh reality but once accepted a lot of pain and frustration can be let go of. A great deal of frustration is born out of a desire to want to do more for your loved one, protect them. Another part is built on guilt feelings, because we think we should do better in the caring role. I agreed with myself to accept I was going to gradually lose mum, the best I could do was help and support her. Sometimes I would fall short in the caring role, based on inexperience, lack of knowledge, fear of the unknown, etc. That was okay as all human beings have the inalienable right to screw up every so often, just try to stop it becoming a habit. The caring role is primarily a lonely one. Mostly we are the only daily judge of how we are doing. Dial down the self criticism, the birth mother of so much frustration. Always remember you are part of the solution not the problem. Your actions will always be doing more good than anyone else, or if your loved one did not have you.

2) My life was going to have to shrink. Never did get married. Now if the right woman finally turned up at the airport, I would not be there, having got distracted down the rabbit hole of caring. Accept that others would never really “get” the caring role unless they had experienced it to. Accept that my siblings were not originally invisibles, but Covid19 has made them Skype virtual relatives, not flesh and blood real physical ones. Accept that meaningful conversations are a thing of the past. Mum increasingly embraces confabulation, so I must nod, say “is that so, that must have been fun, well I never”, never correct, smile inwardly. The news increasingly seems detached from my reality so after a while I find I have no interest in what Boris has to say, how the economy is doing, who will enter the US Supreme Court, etc. At each point I had to make a decision. Rant about the unfairness, get bent out of shape, bounce off the wall, then come back to facing the same problem but with emotional baggage now as well. Or just accept and move on. I found I did not need as many things as I thought I needed, found parts of me I never knew I had. Found I actually like myself. Those reading this how many have really sat down and honestly reviewed yourself? Try it you might be pleasantly surprised with what you find.

3) I agreed with myself to always try and find a way to relax my mind when I could. I meditate daily, go for an early morning walk when possible, on which I listen for birdsong, recognise leaves are green but if you really look how many different shades and shapes there are. I fell back in love with past passions I had let go. The last movement of Beethoven’s 5th Piano Concerto to lift me, Brahms violin sonatas to smooth troubled thoughts. Reread the Peter Lovesay detective series with Inspector Diamond, a complicated and fun character. Demonstrate to myself what a terrible cook I am in the kitchen. I was hopeless now I am borderline poor. The seagulls in our garden have lived quite well on burnt offerings these last few years, but are now on a some what reduced diet.

4) Allow myself to laugh at the outcomes of Dementia. I am in bed and mum has called out several times already did I hear her turn the light out in the front room (long story)? Yes I have repeated each time. Half an hour later I am asked again. Always that gap before I am asked that one last time. What mental loop does my mum go through that brings her back one last time? Sitting in the car on a windy day in May 2018. A few leaves blown of the trees so mum immediately thinks we are in October, when the leaves fall and stays there for weeks in her mind. Being asked terribly politely one day what my name was. “I know you are my son but I could not remember which one”. Just answer the question, you knew one day it would arrive. I do not say “I am the one you live with, who cares for you, etc“. Instead I laugh inwardly which is better than to cry.

5) Bad emotions need soil and water in the soul as much as good ones. Deny them those and they weaken. If you are getting frustrated walk away, accept telling love lies does not count in the morality stakes, buy yourself a hard pillow to punch it works wonders, give yourself a mental picture that calms you, as usually the human brain can only think of one thing at a time. Remember the golden rule it is okay to screw up at times, we are not angels we are human beings prone to faults. At the end of each day talk to yourself. Identify any bad thoughts or emotions you are holding. Now think of someone you intensely dislike. The person who broke your heart at 15yo in your first do or die love. The teacher who failed to see how gifted you were. The employer who made you redundant. The have a nice day merchant on the telephone line. Whoever you nominate now mentally wrap up your nasty feelings and post them onto that person. Imagine their face when they open their present and out leaps frustration, anger, guilt, etc. Nasty but so rewarding to the soul. Try it. Go on you know you want to.

You might have noticed a vein of humour runs in my internal discussions with myself. Please try it. Remember the old saying better to laugh than cry. I am not trying to be flippant, we all know the beast of Dementia. We all have bad days, frustration starts but we can recognise it and try to divert it. Try and empty the bucket when we can. I hope my words strike a chord with at least a few of you. I owe so much to this forum.
Thank you so much for this account. I could almost hear you speaking it. In fact, you ought to record this for people in similar positions to download, I think they would find it immensely helpful, as I did. I'm not terribly tech-savvy and I was wondering if I could print this somehow so that I could re-read it when I'm having a particularly bad day (Mum doesn't have broadband and I'd struggle to read it on my phone. I only get home to my house a few times each week for a few hours (my sanity break) when I can use my laptop.
 

Whisperer

Registered User
Mar 27, 2017
231
Thank you so much for this account. I could almost hear you speaking it. In fact, you ought to record this for people in similar positions to download, I think they would find it immensely helpful, as I did. I'm not terribly tech-savvy and I was wondering if I could print this somehow so that I could re-read it when I'm having a particularly bad day (Mum doesn't have broadband and I'd struggle to read it on my phone. I only get home to my house a few times each week for a few hours (my sanity break) when I can use my laptop.
dear @Arty-girl

Please can you advise what type of lap top you have in terms of what operating system it has on it eg Windows or Apple. I to am not great on computers but if you advise on that point perhaps I or someone else could help you get a printed copy.

I am glad my words can help you. Caring is a lonely and isolating experience. I decided early on to be honest about everything, in the hope some of the things I say might help others. This forum is great for getting help, advice and support. Best of all it allows carers to express feelings in a safe and supportive environment. How we really feel at times, not how society thinks we should feel.

Please take care in the future.
 

jennifer1967

Registered User
Mar 15, 2020
1,220
Southampton
dear @Arty-girl

Please can you advise what type of lap top you have in terms of what operating system it has on it eg Windows or Apple. I to am not great on computers but if you advise on that point perhaps I or someone else could help you get a printed copy.

I am glad my words can help you. Caring is a lonely and isolating experience. I decided early on to be honest about everything, in the hope some of the things I say might help others. This forum is great for getting help, advice and support. Best of all it allows carers to express feelings in a safe and supportive environment. How we really feel at times, not how society thinks we should feel.

Please take care in the future.
on the forum, there are publications and i wondered if you might find it there. you have 10 publications without paying postage so maybe have a look and it can be sent to you
 

Just me

Registered User
Nov 17, 2013
488
Thank you so much for this account. I could almost hear you speaking it. In fact, you ought to record this for people in similar positions to download, I think they would find it immensely helpful, as I did. I'm not terribly tech-savvy and I was wondering if I could print this somehow so that I could re-read it when I'm having a particularly bad day (Mum doesn't have broadband and I'd struggle to read it on my phone. I only get home to my house a few times each week for a few hours (my sanity break) when I can use my laptop.
Hi @Arty-girl
What I do if I want to keep something I’ve accessed on my phone or iPad is copy the text then add it to notes or create an email and paste the copied text and send it to myself.
Perhaps not the most effective way of doing it but it works for me 🙂
 

annielou

Registered User
Sep 27, 2019
1,762
Yorkshire
@Arty-girl If you want to print off Whisperers reply, First go to the reply you want . Highlight/select the part you want to print. Using your mouse or fingerpad on your laptop, hover over the first letter and click using left button on mouse/fingerpad, keep your left button pressed in and use other finger to pull across all the words you want to print. They'll go blue. Release both fingers and then press the right button on mouse/fingerpad. A little pop up box should come up. Click on the Print option. A big pop up box will come up with a preview of what you want to print and you can select PRINT from there.
Hope that makes sense I'm not great at explaining x
 

Arty-girl

Registered User
Jun 29, 2020
14
my husband has vascular dementia and i find its the cruelest of dementias. he was diagnosed in march but had it for a year before so has had 18mths. his memory is awful he gets confused with the grandchildren and which ones which and who they belong to. he is a proud man and wouldnt accept help but the acceptance is now there which does make it easier. he has mellowed so much and actually likes music. usually he would go out music on he would come back music off. i think it helps him. sense of humour helps not to take the situations seriously and know they will pass. the boredom and not seeing others is the worse.i answer questions like its the first time he has asked them. ive had days when i think is this the sum total of my life,is this what ive got to look forward to? dementia is horrible, it will rob of my husband and our future and plans we would have liked to make but i deal with today and forget the future its unknown and not something to look forward to
I'm still trying to be really patient with Mum but some days I fail miserably. I feel as though I'm the worst daughter ever (even though I know I'm not).
 

Arty-girl

Registered User
Jun 29, 2020
14
@Arty-girl If you want to print off Whisperers reply, First go to the reply you want . Highlight/select the part you want to print. Using your mouse or fingerpad on your laptop, hover over the first letter and click using left button on mouse/fingerpad, keep your left button pressed in and use other finger to pull across all the words you want to print. They'll go blue. Release both fingers and then press the right button on mouse/fingerpad. A little pop up box should come up. Click on the Print option. A big pop up box will come up with a preview of what you want to print and you can select PRINT from there.
Hope that makes sense I'm not great at explaining x
Thankyou. I've managed to print it off. Thanks to all the suggestions.
 

Herecomestrouble

Registered User
Dec 11, 2018
31
Dear @Arty-girl

A long reply but writing it down helps me to reaffirm what I agreed with myself gradually over the last three years. As mum’s Dementia has developed and my caring role got more demanding, I noticed my underlying frustration was growing, still does on bad days. I realised I needed to make peace with myself, lay down certain boundaries in my mind, accept certain realities, demolish certain preconceived ideas. Build my own tool box of useful items in the emotional battles of the caring role. Honest and open account which might offend some, but might help at least one other person, which would make the exercise worthwhile. So in no particular order.

1) The notion of “living well with Dementia” is a fairy tale. It is mostly told by non carers so they do not have to feel bad about looking the other way. The more you buy into it the more pain you get. Bluntly the role of the carer is to try their best to take the rough edges off the Dementia experience for their loved one, in the process trying not to get to badly emotionally cut up themselves. It is a battle of growing intensity, which the carer is destined to lose. A harsh reality but once accepted a lot of pain and frustration can be let go of. A great deal of frustration is born out of a desire to want to do more for your loved one, protect them. Another part is built on guilt feelings, because we think we should do better in the caring role. I agreed with myself to accept I was going to gradually lose mum, the best I could do was help and support her. Sometimes I would fall short in the caring role, based on inexperience, lack of knowledge, fear of the unknown, etc. That was okay as all human beings have the inalienable right to screw up every so often, just try to stop it becoming a habit. The caring role is primarily a lonely one. Mostly we are the only daily judge of how we are doing. Dial down the self criticism, the birth mother of so much frustration. Always remember you are part of the solution not the problem. Your actions will always be doing more good than anyone else, or if your loved one did not have you.

2) My life was going to have to shrink. Never did get married. Now if the right woman finally turned up at the airport, I would not be there, having got distracted down the rabbit hole of caring. Accept that others would never really “get” the caring role unless they had experienced it to. Accept that my siblings were not originally invisibles, but Covid19 has made them Skype virtual relatives, not flesh and blood real physical ones. Accept that meaningful conversations are a thing of the past. Mum increasingly embraces confabulation, so I must nod, say “is that so, that must have been fun, well I never”, never correct, smile inwardly. The news increasingly seems detached from my reality so after a while I find I have no interest in what Boris has to say, how the economy is doing, who will enter the US Supreme Court, etc. At each point I had to make a decision. Rant about the unfairness, get bent out of shape, bounce off the wall, then come back to facing the same problem but with emotional baggage now as well. Or just accept and move on. I found I did not need as many things as I thought I needed, found parts of me I never knew I had. Found I actually like myself. Those reading this how many have really sat down and honestly reviewed yourself? Try it you might be pleasantly surprised with what you find.

3) I agreed with myself to always try and find a way to relax my mind when I could. I meditate daily, go for an early morning walk when possible, on which I listen for birdsong, recognise leaves are green but if you really look how many different shades and shapes there are. I fell back in love with past passions I had let go. The last movement of Beethoven’s 5th Piano Concerto to lift me, Brahms violin sonatas to smooth troubled thoughts. Reread the Peter Lovesay detective series with Inspector Diamond, a complicated and fun character. Demonstrate to myself what a terrible cook I am in the kitchen. I was hopeless now I am borderline poor. The seagulls in our garden have lived quite well on burnt offerings these last few years, but are now on a some what reduced diet.

4) Allow myself to laugh at the outcomes of Dementia. I am in bed and mum has called out several times already did I hear her turn the light out in the front room (long story)? Yes I have repeated each time. Half an hour later I am asked again. Always that gap before I am asked that one last time. What mental loop does my mum go through that brings her back one last time? Sitting in the car on a windy day in May 2018. A few leaves blown of the trees so mum immediately thinks we are in October, when the leaves fall and stays there for weeks in her mind. Being asked terribly politely one day what my name was. “I know you are my son but I could not remember which one”. Just answer the question, you knew one day it would arrive. I do not say “I am the one you live with, who cares for you, etc“. Instead I laugh inwardly which is better than to cry.

5) Bad emotions need soil and water in the soul as much as good ones. Deny them those and they weaken. If you are getting frustrated walk away, accept telling love lies does not count in the morality stakes, buy yourself a hard pillow to punch it works wonders, give yourself a mental picture that calms you, as usually the human brain can only think of one thing at a time. Remember the golden rule it is okay to screw up at times, we are not angels we are human beings prone to faults. At the end of each day talk to yourself. Identify any bad thoughts or emotions you are holding. Now think of someone you intensely dislike. The person who broke your heart at 15yo in your first do or die love. The teacher who failed to see how gifted you were. The employer who made you redundant. The have a nice day merchant on the telephone line. Whoever you nominate now mentally wrap up your nasty feelings and post them onto that person. Imagine their face when they open their present and out leaps frustration, anger, guilt, etc. Nasty but so rewarding to the soul. Try it. Go on you know you want to.

You might have noticed a vein of humour runs in my internal discussions with myself. Please try it. Remember the old saying better to laugh than cry. I am not trying to be flippant, we all know the beast of Dementia. We all have bad days, frustration starts but we can recognise it and try to divert it. Try and empty the bucket when we can. I hope my words strike a chord with at least a few of you. I owe so much to this forum.
Love it ! Thanks Whisperer
 

Arty-girl

Registered User
Jun 29, 2020
14
Yep!
please feel free to borrow my invisible parrot.
It sits on my shoulder, it runs a commentary on what it sees, it can be very funny, at times I have to confess it needs it’s mouth washed out with soap!
Meanwhile I say in the calmest tone ‘ never mind it won’t take a minute to clear up’!
Thankyou Weasel, I think I might borrow it.
 

Arty-girl

Registered User
Jun 29, 2020
14
dear @Arty-girl

Please can you advise what type of lap top you have in terms of what operating system it has on it eg Windows or Apple. I to am not great on computers but if you advise on that point perhaps I or someone else could help you get a printed copy.

I am glad my words can help you. Caring is a lonely and isolating experience. I decided early on to be honest about everything, in the hope some of the things I say might help others. This forum is great for getting help, advice and support. Best of all it allows carers to express feelings in a safe and supportive environment. How we really feel at times, not how society thinks we should feel.

Please take care in the future.
Thankyou, I did manage to print it off. I might have thanked you before, but on another reply (as I said I'm not very tech savvy). I feel it will come in very handy this week as I feel it's going to be bad. The memory clinic rang yesterday to arrange a day and time to have a telephone conversation with mum. Oh dear! I tried to tell her about it afterwards but the look I got back told a thousand words and none of them where cheery and, of course, she said she's absolutely fine and nothing wrong with her. I'm kind of glad she will probably have forgotten it for now, but I will need to broach the subject again before next Tuesday. I'm feeling like I'm losing my grip this week. I probably shouldn't have left her this morning as we had a disagreement over something else but I needed a few hours space, so I've come home to use my internet for a little while. I'm having one of those "I feel worthless" type of day.
 

lemonbalm

Registered User
May 21, 2018
850
It might be best not to mention the telephone conversation again until just beforehand - or even not mention it at all and take her by surprise. That way, you can say it was all their doing and avoid being the bad guy. If you do have to mention it, you can make it out to be your mum's opportunity to prove to those stupid memory people that there's nothing wrong.

We all feel as though we lose our grip sometimes when we're looking after someone with dementia! It's a very slippery place to be and we don't get a how to do it guide. You are, in fact, doing a marvelous job, @Arty-girl . This is extremely difficult and stressful stuff. You can be proud of yourself for doing as well as you are.
 

Whisperer

Registered User
Mar 27, 2017
231
Thankyou, I did manage to print it off. I might have thanked you before, but on another reply (as I said I'm not very tech savvy). I feel it will come in very handy this week as I feel it's going to be bad. The memory clinic rang yesterday to arrange a day and time to have a telephone conversation with mum. Oh dear! I tried to tell her about it afterwards but the look I got back told a thousand words and none of them where cheery and, of course, she said she's absolutely fine and nothing wrong with her. I'm kind of glad she will probably have forgotten it for now, but I will need to broach the subject again before next Tuesday. I'm feeling like I'm losing my grip this week. I probably shouldn't have left her this morning as we had a disagreement over something else but I needed a few hours space, so I've come home to use my internet for a little while. I'm having one of those "I feel worthless" type of day.
Dear @Arty-girl

Chin up. Next Tuesday will happen one day in my life. Covid19 has put everything outside the house on hold but sometime next year no doubt me and mum will eventually go back to the Memory Clinic. I can cope now and do not want to risk destroying mum’s confidence in me. On that bridge so much will rest for mum in the future. Right now carers groups, day centres, etc, are little more than pipe dreams in my area. Me and mum locked into our little space ship called home, internet groceries, doing a life book together (for the grandkids mum), jigsaws, small walks in the alley weather permitting, a diagnosis seems meaningless by itself. Almost certainly mum has Vascular Dementia so no treatment beyond keeping the blood pressure under control as best I can. No invisible parrot but to all intents and purposes 99% of the world has become invisible to mum. She seems more calm and happier now we rarely go out for medical appointments only.

@lemonbalm makes a very good point. Let the Memory Clinic “own the problem“. Your role will be to pick up any pieces after the call is over. Do you have speaker phone so you can hear what is said? If not you might want to warn your mum on the day of the call and ask if she wants to take the call or verbally authorise you to do so. Wait for the day, try and judge what would be best on the day. You might want to note down any questions you may have such as medications, etc. Hope it goes well I will keep my fingers crossed for you.
 

lushr

Registered User
Sep 25, 2020
16
my mum never remembers the fight that i’ve been lamenting about all day, she has forgotten i. an hour.

the thing that made a big difference for me was understanding that her behaviour (at first just complex grief) was actually symptoms of an illness. when i read through and recognised it all i found i was more understanding and a lot less blaming.

i still lose my temper when she surprises me, like today she escaped from her nursing home... but i try to give it an hour, and if it hasn’t gone awY, the. i need help, i need to take care of myself.

usually in the heat of the moment mum tells me off for yelling at her and i say i’m sorry but i’m frustrated and i just need. minute and i walk away for about 15 minutes. clear my mind... then come back and start afain


you are losing your temper because you’re pushed too far. you have to take time for yourself. sure some people are saints and live with their parents and care for them without ever saying bad word, but we are all different, my psychologist is my main outlet!

louisa
 

Herecomestrouble

Registered User
Dec 11, 2018
31
This may not be everyone’s cup of tea, but at a very low moment the other day I wondered,( as you do!) whether there was any research out there about depression and carers. Silly me. Of course there is, by the shed load.. I found the following simply via a popular search engine and found it strangely reassuring that what I am feeling is extremely common amongst carers..so I am not uniquely mad, or weak, or hopeless or horrible to have such feelings. The research was done a while ago now....am not sure that services to meet the needs of carers are so much better now than then, but they must be, surely!

Aging & Mental Health, March 2006; 10(2): 101–106
ORIGINAL ARTICLE
The relation of entrapment, shame and guilt to depression, in carers of people with dementia
Y. MARTIN, P. GILBERT, K. MCEWAN, & C. IRONS
Mental Health Research Unit, Kingsway Hospital, Derby, UK (Received 13 May 2004; accepted 2 March 2005 )

Have also just acquired Oliver James’s book, Contented Dementia which has been v well reviewed and promises “ amazing benefits for patients and carers alike”. Have not started it yet but it helps to think that I am being pro active in this business when so often I feel like I am struggling to make any positive difference whatsoever
 

Herecomestrouble

Registered User
Dec 11, 2018
31
P..S. I have just found out that The Alzheimer’s Society does not support the use of the “SPECAL “ method which is promoted in Oliver James’s book. I guess like so many things, it is a question of mix and match, and finding what in practice works best for the person with dementia. No “one size fits all “ for sure in this business.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
I have read Contented Dementia and found that some things were helpful and other things not so. It is quite controversial, but if you go in with a pick and mix attitude and if it doesnt help, drop it, then you may find bits of it very helpful.

Personally, I found The Selfish Pigs Guide to Caring by Hugh Marriott, much more helpful (and amusing)
 

Hazara8

Registered User
Apr 6, 2015
547
I know what Mum is going through (vascual-dementia) is horrendous, and I'm not a natural born 'carer', but can anyone suggest anything that will diffuse my 'boiling-point' as there are many times when I've said something through shear frustration and then spent the rest of the day feeling so guilty as she obviously can't fathom things out. Although I don't officially live with my Mum, I have been with her since two weeks before lock-down as she broke her wirst. She didn't appear to have signs of dementia at that time, however, it became obvious during lockdown and seems to be progressing at a rate of knots and now I loathe the thought of leaving her for more than a few hours a day when I nip home to use my broadband to regain some sanity. Her GP did a memory test and has referred her to the Memory Clinic, although because of Pandemic backlog I'm very doubtful that she will receive an appointment. At the moment, she's in denial. Last night was the first night I have had a bed to sleep in in six months. Usually it's been either the sofa or an inflatable campbed. I've not have a proper conversation about anything in general in all that time and some days I feel pretty close to exploding so anything, a mantra, a (short) poem, a song, etc. would be helpful. Reading through this, I sound like a complete b.... but I just find the whole situation very difficult.
Difficult becomes an understatement of considerable proportions when we apply the word to dementia. Any abnormality poses a challenge, some moreso than others. A personal challenge has to be confronted directly at the end of the day, if it is to be clearly addressed, despite any peripheral advice. One is referring to psychological challenges here. I am afraid that all the books in the world cannot open the pages of your own book. This person has in his youth read everything from Zen through Buddhism and tasted many theosophical texts and all manner of " mind expansion" writings and Yoga and so on. Nothing actually means anything when you are reliant on an outside source, because when the source is no longer there, you are lost, alone and with just yourself. Then, that is when one might discover what you truly are. In caring for someone very close, where the relationship actually feels so attached that everything that takes place registers psychologically, then it is of no surprise when any disruption in that relationship has a marked if not profound effect on you. Dementia is alike a third party infiltrating that relationship. It changes the hitherto ' normality' of that relationship and it does so through the body and soul of the one who you know and love and understand -- and changes everything without any consultation of either you or most significantly, the one whom it now inhabits. So, it then requires recognition of that imposter in all its guises. Difficult. The sudden snappy outburst or glowering expression which invites an instinctive reaction - is it authentic? Or is it the imposter Dementia? Did he or she really mean that? After all l have been striving so very hard to do? Does that remark warrant a reprimand?
There are no blueprints to resolving any of these dilemmas and that remains a raw reality. Every single case is different. We as Carers are different, with our own history, our likes and dislikes, our reserves of energy, patience and domestic situation. Whilst there are drugs and tactics and regimes ( in Care Homes) to alleviate the varied presentations of dementia, the fact remains that dementia behaviour which poses huge challenges for we who willingly take the role of Carer, has to be seen as the " devil in the box" and approached as such, DEVOID of the one it inhabits. Difficult . But to nurture the one in your Care as a prisoner subject to all manner of reluctant behaviour instigated by the Dementia captor, is to recognise that the loved one is completely innocent - despite the tantrum, the screams of abuse, the apparent disregard for your unconditional Care. And when that fleeting moment comes, when the one you know and love so deeply and ' communication ' shines that heartfelt light upon you both in mutual wordless accord, you know that the imposter does not rule neither you nor the loved one, fundamentally because you perceive its presence and its expression and treat it accordingly. The one whom you love and Care for cannot perceive any of that and that is why, however extraordinarily difficult it might be, you learn to treat both imposter and the one it has claimed as its own, with abiding awareness. Then, one wishes wholeheartedly, that you know what to do or what to say or not say at a given moment. Therein lies profund introspection, which can only be a good thing and certainly a good thing for the one you Care for, because you have opened the pages of YOUR own book.
 

Whisperer

Registered User
Mar 27, 2017
231
Difficult becomes an understatement of considerable proportions when we apply the word to dementia. Any abnormality poses a challenge, some moreso than others. A personal challenge has to be confronted directly at the end of the day, if it is to be clearly addressed, despite any peripheral advice. One is referring to psychological challenges here. I am afraid that all the books in the world cannot open the pages of your own book. This person has in his youth read everything from Zen through Buddhism and tasted many theosophical texts and all manner of " mind expansion" writings and Yoga and so on. Nothing actually means anything when you are reliant on an outside source, because when the source is no longer there, you are lost, alone and with just yourself. Then, that is when one might discover what you truly are. In caring for someone very close, where the relationship actually feels so attached that everything that takes place registers psychologically, then it is of no surprise when any disruption in that relationship has a marked if not profound effect on you. Dementia is alike a third party infiltrating that relationship. It changes the hitherto ' normality' of that relationship and it does so through the body and soul of the one who you know and love and understand -- and changes everything without any consultation of either you or most significantly, the one whom it now inhabits. So, it then requires recognition of that imposter in all its guises. Difficult. The sudden snappy outburst or glowering expression which invites an instinctive reaction - is it authentic? Or is it the imposter Dementia? Did he or she really mean that? After all l have been striving so very hard to do? Does that remark warrant a reprimand?
There are no blueprints to resolving any of these dilemmas and that remains a raw reality. Every single case is different. We as Carers are different, with our own history, our likes and dislikes, our reserves of energy, patience and domestic situation. Whilst there are drugs and tactics and regimes ( in Care Homes) to alleviate the varied presentations of dementia, the fact remains that dementia behaviour which poses huge challenges for we who willingly take the role of Carer, has to be seen as the " devil in the box" and approached as such, DEVOID of the one it inhabits. Difficult . But to nurture the one in your Care as a prisoner subject to all manner of reluctant behaviour instigated by the Dementia captor, is to recognise that the loved one is completely innocent - despite the tantrum, the screams of abuse, the apparent disregard for your unconditional Care. And when that fleeting moment comes, when the one you know and love so deeply and ' communication ' shines that heartfelt light upon you both in mutual wordless accord, you know that the imposter does not rule neither you nor the loved one, fundamentally because you perceive its presence and its expression and treat it accordingly. The one whom you love and Care for cannot perceive any of that and that is why, however extraordinarily difficult it might be, you learn to treat both imposter and the one it has claimed as its own, with abiding awareness. Then, one wishes wholeheartedly, that you know what to do or what to say or not say at a given moment. Therein lies profund introspection, which can only be a good thing and certainly a good thing for the one you Care for, because you have opened the pages of YOUR own book.
Dear @Hazara8

Thank you for posting these thought provoking words. As you say in the end we have to look within, start to open the pages of our own book, to deal with what we have to externally, in a caring role. Learn to work around the invisible elephant in our loved ones life.

An old saying keeps coming back to me, first related to me in a very sad moment in my life. “They were the best of times, they were the worst of times”. In the caring role clearly we know what the worst of times are. But in overcoming problems, supporting our loved one, developing inside ourselves, we know a little more about the best of times. At another level yes sadness what a cruel illness is doing to our loved one. But conversely we are saddened because we knew and loved that person when they were at their best. I always had a good relationship with my mum. Caring must be so much harder where the relationship with the PWD was strained before the illness. For those individuals I have a very high regard when they take on a caring role at any level.

Thank you again for a thoughtful post. Best wishes for the future, continuing to turn the pages of your own book.
 

Herecomestrouble

Registered User
Dec 11, 2018
31
Difficult becomes an understatement of considerable proportions when we apply the word to dementia. Any abnormality poses a challenge, some moreso than others. A personal challenge has to be confronted directly at the end of the day, if it is to be clearly addressed, despite any peripheral advice. One is referring to psychological challenges here. I am afraid that all the books in the world cannot open the pages of your own book. This person has in his youth read everything from Zen through Buddhism and tasted many theosophical texts and all manner of " mind expansion" writings and Yoga and so on. Nothing actually means anything when you are reliant on an outside source, because when the source is no longer there, you are lost, alone and with just yourself. Then, that is when one might discover what you truly are. In caring for someone very close, where the relationship actually feels so attached that everything that takes place registers psychologically, then it is of no surprise when any disruption in that relationship has a marked if not profound effect on you. Dementia is alike a third party infiltrating that relationship. It changes the hitherto ' normality' of that relationship and it does so through the body and soul of the one who you know and love and understand -- and changes everything without any consultation of either you or most significantly, the one whom it now inhabits. So, it then requires recognition of that imposter in all its guises. Difficult. The sudden snappy outburst or glowering expression which invites an instinctive reaction - is it authentic? Or is it the imposter Dementia? Did he or she really mean that? After all l have been striving so very hard to do? Does that remark warrant a reprimand?
There are no blueprints to resolving any of these dilemmas and that remains a raw reality. Every single case is different. We as Carers are different, with our own history, our likes and dislikes, our reserves of energy, patience and domestic situation. Whilst there are drugs and tactics and regimes ( in Care Homes) to alleviate the varied presentations of dementia, the fact remains that dementia behaviour which poses huge challenges for we who willingly take the role of Carer, has to be seen as the " devil in the box" and approached as such, DEVOID of the one it inhabits. Difficult . But to nurture the one in your Care as a prisoner subject to all manner of reluctant behaviour instigated by the Dementia captor, is to recognise that the loved one is completely innocent - despite the tantrum, the screams of abuse, the apparent disregard for your unconditional Care. And when that fleeting moment comes, when the one you know and love so deeply and ' communication ' shines that heartfelt light upon you both in mutual wordless accord, you know that the imposter does not rule neither you nor the loved one, fundamentally because you perceive its presence and its expression and treat it accordingly. The one whom you love and Care for cannot perceive any of that and that is why, however extraordinarily difficult it might be, you learn to treat both imposter and the one it has claimed as its own, with abiding awareness. Then, one wishes wholeheartedly, that you know what to do or what to say or not say at a given moment. Therein lies profund introspection, which can only be a good thing and certainly a good thing for the one you Care for, because you have opened the pages of YOUR own book.
How beautifully and eloquently put Hazara8... not many people are gifted with the ability to put such experiences into words and yet when you do I suspect you speak for a lot of people and give voice to their experience and feelings. Thank you