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Carer's strategies for diffusing frustration

Arty-girl

Registered User
Jun 29, 2020
14
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.
 

lollyc

Registered User
Sep 9, 2020
69
Can't suggest anything, as I too and in the same position (but at least you're not alone). I hate myself for being so unsympathetic, but it is so difficult not to snap. A sensible conversation would be lovely.....
 

Arty-girl

Registered User
Jun 29, 2020
14
Can't suggest anything, as I too and in the same position (but at least you're not alone). I hate myself for being so unsympathetic, but it is so difficult not to snap. A sensible conversation would be lovely.....
Thankyou lollyc. If I allowed myself to get emotional I would spend the day in tears so I feel I have to 'armour' myself. Unfortunately, that's when I end up getting snappy even though we've probably had a good day together until something triggers me.
 

lemonbalm

Registered User
May 21, 2018
850
Well, different things work for different people. If I got really strung out, I used to take a deep breath and ask myself "ok, has anything really bad actually happened here". Usually the answer was no. Occasionally the answer was yes but I could deal with it better after a deep breath and a moment to compose myself. Apart from that I was pretty hard with myself and every morning before setting off for my "parallel universe" (ie going to spend the day with mum) told myself "either do it with a glad heart or don't do it at all".

I also used to listen to "The Happy Song"by Pharrell Williams at every opportunity.

Seeing the humour in any given situation where at all possible (sometimes putting it to the theme tune for the Benny Hill Show) or turning it into a cartoon in my head often worked.
 

Weasell

Registered User
Oct 21, 2019
749
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’!
 

Weasell

Registered User
Oct 21, 2019
749
Have you seen @Grannie G compassionate communication?

 

Jaded'n'faded

Registered User
Jan 23, 2019
1,006
High Peak
There are many saints on TP who care for a loved one by themseves for years and I absolutely take my hat off to them.

I am not one. I did what I could, but couldn't have done more. Fortunately I wasn't living with my mum - she had a crisis during the fairly early stages and became very bad overnight so I moved her to a care home near me. I did do my duty - I visited every week for 3 years (twice a week in the first year!) and made sure she had everything she needed. But it was hard, very hard. We'd never been close and I didn't like her much. (There - I've said it!)

We all do what we can and you shouldn't feel bad for being impatient or frustrated. Mostly I got through our conversations by distracting her from her delusions and saying, 'Oh really?' a lot. She would always greet me with, 'So have you had a nice Christmas', repeating it frequently throughout my visit. It used to drive me bananas and one day I lost it with her and told her in no uncertain terms how things actually were. (She thought nothing was wrong with her of course.) I shouldn't have done it and felt very mean and upset afterwards. Mum wasn't particularly bothered, brushing off my 'truths' by saying that yes, she had had dementia but the doctor said she was better now so she was moving back to her parents' house. I gave up with 'the truth' after that but fortunately mum forgot my outburst.

Don't be hard on yourself - none of us are trained in dementia caring and would never choose a caring role if we had any choice. Sometimes the caring is just thrust upon you and we have to do the best we can.
 

Arty-girl

Registered User
Jun 29, 2020
14
Well, different things work for different people. If I got really strung out, I used to take a deep breath and ask myself "ok, has anything really bad actually happened here". Usually the answer was no. Occasionally the answer was yes but I could deal with it better after a deep breath and a moment to compose myself. Apart from that I was pretty hard with myself and every morning before setting off for my "parallel universe" (ie going to spend the day with mum) told myself "either do it with a glad heart or don't do it at all".

I also used to listen to "The Happy Song"by Pharrell Williams at every opportunity.

Seeing the humour in any given situation where at all possible (sometimes putting it to the theme tune for the Benny Hill Show) or turning it into a cartoon in my head often worked.
Thankyou Lemonbalm. Strangely enough, I take Lemonbalm an theanine to help me sleep at night.
 

lemonbalm

Registered User
May 21, 2018
850
Thankyou Lemonbalm. Strangely enough, I take Lemonbalm an theanine to help me sleep at night.
I'm not surprised you need something to help you sleep. What you are doing is extremely difficult. Has a doctor manged to see or speak to your mum since you started looking after her? I know it's really tricky with feisty mums but the current situation doesn't sound like a long term solution.
 

Duggies-girl

Registered User
Sep 6, 2017
2,134
@Artie Girl It is so flipping hard, my dad was a sweet, kind natured and funny man and I lived with him for his final year and it was still hard even though he was probably the easiest and most compliant person with dementia to look after in the world. I still wanted to tear my hair out at times due to the sheer boredom and frustration of it all. I was occasionally a bit short with him which made me feel downright nasty and full of guilt but he would forget it straight away. I found that walking away was the best thing if I felt annoyed by anything and then I could just come back with a smile and change the subject to something else.

I also found solace in jigsaw puzzles just to take me away from things.

What I am saying is just don't feel guilty. It's bad enough that we are forced into this situation (not many do it willingly) without beating ourselves up over what is usually only a small thing. Caring 24/7 is incredibly hard and we get no thanks for it, little or no help and are just expected to get on with it and be happy as well. I don't think it is possible.
 

annielou

Registered User
Sep 27, 2019
1,762
Yorkshire
Unfortunately I never really found anything that helped me, So have nothing really useful to offer apart from I did suck rescue remedy lozenges and use the liquid dropper too which I think helped calm me a bit. Somedays I would easily reach maximum amount you should have. I stayed at mum for four months and I often had the maximum then. When I eventually went back to sleeping at home but visitng for about 8 hours a day I often sucked a Lozenge on way over to mums each day and popped another in or put drops in my tea during the day if I felt things brewing. I also used to post a LOT on here to get my feelings and thoughts about the day out.
I’d sometimes tell mum I need a wee to get out the way and have a silent rant or cry to save me doing it front of mum, it had to be silent as mum lived in small bungalow, and I couldn’t stay in there long either as mum would start asking where I was and what I was doing and come looking for me. I would sometimes text my hubby or sister which sometimes helped to put it down n moan in text rather than at mum, if I could manage it without mum seeing and always had to have my phone on low to avoid mum hearing beep of reply cos she didn’t like me texting and not giving her my full attention . Sometimes though I just couldn’t help it and my frustration came out and I felt awful afterwards. I used to tell myself she’s not doing this on purpose, she doesn’t want to act like this it’s the dementia not mum talking. It didn’t always work though but sometimes it stopped me reacting badly. I know as time wore on I did start letting some things go and not letting my upset and frustration show to mum. I started realising sometimes just to try sit quiet and let things blow over rather than try to reason or explain or try to get her to do something. I’d be inwardly seething or upset but just sit saying nothing till eventually enough time passed for mum to forget what she was het up about and be distracted, those are the times I’d suck a lozenge or text while I seethed in silence waiting for us to calm down and mum to forget it.
To be honest though I never managed to be completely calm with mum, never managed to not let things bother me, never managed to dodge the guilt or the frustration caring brings.
I love my mum but I’m not a perfect daughter and I’m not a perfect carer but I try my best most of the time, just like my mum wasn’t a perfect mum but she tried her best most of the time too.
You don’t sound like a complete b- at all. You sound like you care about your mum but it is a hard stressful thing to look after someone with dementia and you sound like you are trying really hard to look after her so well done.
Just try your best it’s all you can do you are human. 🤗
 

lollyc

Registered User
Sep 9, 2020
69
I don't think even my biggest fans would call me patient or caring (unless you have 4 legs and a tail), so not a good starting point! And, to be honest, I could do without being constantly reminded how everyone else is "Living Well" with dementia. But I am getting better at letting it all wash over me, and saying Uh huh? at intervals. Today I have had 2 hour monologue about the party that we attended yesterday for my 100th Birthday, with all the grandchildren there. It goes without saying there was no party, Mum has no grandchildren, and, whilst I might feel 100, I'm actually not. 3 years ago I would've spent several hours repeating how none of it was true, now I simply don't bother. It's just not worth it. I do try not to think about it too much, or I would be constantly crying. I do have a couple of good friends, who I call and rant to, but they don't have dementia experience, and can't really understand. Actually, I think if most of us told others exactly what goes on every day, they wouldn't believe it.
 

TNJJ

Registered User
May 7, 2019
1,820
cornwall
I don't think even my biggest fans would call me patient or caring (unless you have 4 legs and a tail), so not a good starting point! And, to be honest, I could do without being constantly reminded how everyone else is "Living Well" with dementia. But I am getting better at letting it all wash over me, and saying Uh huh? at intervals. Today I have had 2 hour monologue about the party that we attended yesterday for my 100th Birthday, with all the grandchildren there. It goes without saying there was no party, Mum has no grandchildren, and, whilst I might feel 100, I'm actually not. 3 years ago I would've spent several hours repeating how none of it was true, now I simply don't bother. It's just not worth it. I do try not to think about it too much, or I would be constantly crying. I do have a couple of good friends, who I call and rant to, but they don't have dementia experience, and can't really understand. Actually, I think if most of us told others exactly what goes on every day, they wouldn't believe it.
Sorry. I know I shouldn’t laugh but I did. I so much prefer 4 legs and a tail.(I have 2 rescue dogs) I am constantly saying “ugh huh” or “ tea coffee? for what feels like a million times.. Plus on a Tuesday or Thursday (my dad saves it just for me) I get toilet duty.. Love it😂!
 

OnPoint

New member
Sep 3, 2020
9
You are not alone. My mantra is "this too shall pass". I hope it helps just to know others are going through the same thing.
 

Bikerbeth

Registered User
Feb 11, 2019
1,706
Bedford
I am not a natural born Carer and in lots of ways not that close to my Mum. After Mum got her diagnosis I ended up with Mum full time either at my house or hers whilst she has cataract surgery on both eyes (so about 3 months) My solution was walking or rather stomping for about an hour each day. When Mum was back on her own with Carers twice a day (and I would stay 2 days a week) I would walk and ring her at the same time. I found it a lot easier to keep answering the same questions patiently.
I think we all do the best we can with the skills we have and some of the skills take time to learn.
 

Whisperer

Registered User
Mar 27, 2017
231
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.
 
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Onename

New member
Sep 28, 2020
5
Hello I am a new forum member. My situation with mum is very similar. Don’t despair too much re referral to Memory clinic just yet. Mums came about within two weeks of referral and I think next two weeks the assessment was complete. Vascular dementia - mild. I was amazed it was done on the phone both with me and mum. I was concerned that mum would react badly as she has always feared this diagnosis. In the end the mental health worker (MHW) did do a home visit. The worse thing was the dreadful standard final assessment letter they send. It is very stark and think unkind. I thought mum would react badly. However, the home visit must have had a positive effect, the MHW rang her in advance to explain the letter was coming. We agreed he would ask mum if she wanted the letter sent to her or to me, as I deal with all her life admin. She actually said to her. I had a copy and I gave her a weekend as I was away with daughter. Surprisingly she told me she had vascular dementia. I was amazed, she was calm about it. I think the MHW was very skilled. I wonder if she was secretly glad to know why she has been having such problems. E.g following knitting patterns, not being able to concentrate on reading, more short term memory, losing things. You all know this.
But what I am trying to say is, I feel we can go forward now. It is going to be very hard. I need to get the Health and welfare Power of Attorney while mum still has capacity. (We have an old Enduring POA).
The thing I find most helpful is the one hour 7 days a week Carers that come from 8.00-9.00 a.m. I would recommend it if you can find a good care agency. It certainly helps me as I am not an early riser and I know they help with medication and commode etc. We are lucky to find such a wonderful agency.
I have joined the forum as I find the emotional issues very hard. I am an only child and I have a busy life although retired. I am trying to find out all the support I can before everything goes ape as I know it will. Yesterday was tough with a seizure on the loo, fall off the loo and wait for the cheery ambulance chaps. One of those backward steps to come I guess.
Go well folks, I look forward to this forum helping me feel less alone with this rubbish condition! I forgot to say I have just taken a three session online managing stress for Carers course. It was surprisingly helpful. I admit I have been a bit reluctant to do the Carers support thing but I give in now. :)
 
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jennifer1967

Registered User
Mar 15, 2020
1,220
Southampton
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
 

Onename

New member
Sep 28, 2020
5
Jennifer, I am in awe of how you are approaching this time in your life. Humour is to be valued. She referred to herself as my daughter recently as she got the words mixed up. I told her I would try not to be such a bossy mother! Mum always responds well to burley men around her! Wishing you support and kindness to help you.
 

jennifer1967

Registered User
Mar 15, 2020
1,220
Southampton
Jennifer, I am in awe of how you are approaching this time in your life. Humour is to be valued. She referred to herself as my daughter recently as she got the words mixed up. I told her I would try not to be such a bossy mother! Mum always responds well to burley men around her! Wishing you support and kindness to help you.
you are going have to invite the rugby club for tea!! i do get annoyed. i clean the oven because it was going to get repaired i have a problem with my sciatic nerve so i was in pain, sat down opened the paper and he asked whats on tv, the remote was sent his way and told him to see for himself. early on, i felt under valued but soon realised he didnt know what i meant so soon realised it was upsetting me more and was no point in it. didnt solve anything and just me made upset