A hollow time, a time of emptiness, of loss and falsehoods.

CoastalPair

Registered User
Jan 26, 2022
17
0
The wild and violent tides of life have taken a heavy toll, breaking down any resolve, sapping the strength, dimming the light and ushering in the blackness.

Everyday, every hour of everyday there is no relief and all the many and varied symptoms progressively spiral downwards.

A new development, sudden switches in temperament, displaying paranoia and anger for no reason against me, (her sole carer.)

This even extends to becoming verbally abusive, (but not violent as of yet.)

We already suffered with frequent mood swings, which normally display as increased anxiousness, frustration, and agitation, producing floods of tears and fears of being abandoned.

We are also currently experiencing an increase in confusion and disorientation with constantly wanting to go out, wandering and getting lost.

We are not aware of what the time of day is, what day or month it is. We are not aware any news or events, nor are we aware of the usual social boundaries.

There is constant obsessive and repetitive behaviour, moving objects, removing pictures from walls, pulling tags off coats and clothes and ripping insoles out of shoes.

We suffer delusions, we believe the presenters on television are living in our house, and that we have more than one dog.

We also regularly repeat entire imaginary conversations with strangers on the street and invent nonexistent problems and situations.

We have problems with speech, (aphasia) mixing words up, with conversations becoming surreal and not based in reality.

Every night our sleep is disturbed, sleeping for fifteen to twenty minutes before getting up, then folding and refolding the bed linen, dressing gowns and coats, while wandering about the house leaving every light on before returning to bed - to start the routine all over again twenty minutes later.

We now see and hear things that do not exist (hallucinations), and can have a whole conversation and argument with a non existent person.

All mirrors and reflective surfaces have had to be removed, all exterior door locked and keys hidden.

We cannot perform simple tasks, i.e. making tea, hovering, cooking and we cannot operate any gadgets or machines.

Personal hygiene is non- existent and a matter of direct conflict, refusing point blank to bathe or shower, wash hands, clean teeth. Clothes are miss matched, seldom changed and excessive, it is not uncommon to wear two pairs of leggings, three jumpers and knickers outside our trousers.

Deflection, changing tactics, gentle persuasion has all stopped working, instead we have stubbornness, refusal and sullen glares.

There is no end in sight, no relief, no respite, just vacuous platitudes from those who are meant to care for the sick, their hypocrisy is staggering.

It is a hollow time, a time of emptiness, of loss and falsehoods.
 

windyhill

Registered User
Dec 9, 2023
39
0
81
I share your pain. My wife is 3 years into dementia (AZ+ vascular). She exhibits most of the symptoms you have illustrated plus many others, all of them extremely difficult to cope with.
You don’t mention incontinence - I’ve had to confront this just in the last month. Something I knew would come but I was hoping not as soon. However, here we are.
I get up early and try to get her to remove her soiled nightclothes and if I manage that it takes at least 20 minutes to achieve. After getting her re-dressed in clean clothes, I take the kylie sheet and put it in the washing machine and line up all the other stuff for washing. When she gets up she will switch off the washing machine mid cycle because it is “her job” and her washing machine and she doesn’t like someone else (me) using it. So after a loud argument I will start all over again and just hope she forgets the machine is on.
My only escape is when I drop her off to memory cafes which gives me 4 hours of respite twice a week. I also get 3 hours when her friend takes her out for morning coffee once a week. I even enjoy the supermarket shopping when she is at one of these outlets because shopping with her has become a nightmare.
Try and get yourself some respite. Even though the memory cafes cost me quite a bit of money. I am quite happy to pay for it.
 

SherwoodSue

Registered User
Jun 18, 2022
707
0
I do not know how you are managing to continue with home care. I am concerned for your wellbeing. Carer burnout is a real thing.
 

Kevinl

Registered User
Aug 24, 2013
7,093
0
Salford
We all "hit the wall" as the running term goes, you want to stop running, but you want to win too.
You just have to force yourself to keep running.
Now I'm alone since she passed away "I'd trade all my tomorrows for a single yesterday" as the line from the song goes. Take care of yourself.
K
 

Bay Tree

Registered User
Jun 19, 2023
34
0
The wild and violent tides of life have taken a heavy toll, breaking down any resolve, sapping the strength, dimming the light and ushering in the blackness.

Everyday, every hour of everyday there is no relief and all the many and varied symptoms progressively spiral downwards.

A new development, sudden switches in temperament, displaying paranoia and anger for no reason against me, (her sole carer.)

This even extends to becoming verbally abusive, (but not violent as of yet.)

We already suffered with frequent mood swings, which normally display as increased anxiousness, frustration, and agitation, producing floods of tears and fears of being abandoned.

We are also currently experiencing an increase in confusion and disorientation with constantly wanting to go out, wandering and getting lost.

We are not aware of what the time of day is, what day or month it is. We are not aware any news or events, nor are we aware of the usual social boundaries.

There is constant obsessive and repetitive behaviour, moving objects, removing pictures from walls, pulling tags off coats and clothes and ripping insoles out of shoes.

We suffer delusions, we believe the presenters on television are living in our house, and that we have more than one dog.

We also regularly repeat entire imaginary conversations with strangers on the street and invent nonexistent problems and situations.

We have problems with speech, (aphasia) mixing words up, with conversations becoming surreal and not based in reality.

Every night our sleep is disturbed, sleeping for fifteen to twenty minutes before getting up, then folding and refolding the bed linen, dressing gowns and coats, while wandering about the house leaving every light on before returning to bed - to start the routine all over again twenty minutes later.

We now see and hear things that do not exist (hallucinations), and can have a whole conversation and argument with a non existent person.

All mirrors and reflective surfaces have had to be removed, all exterior door locked and keys hidden.

We cannot perform simple tasks, i.e. making tea, hovering, cooking and we cannot operate any gadgets or machines.

Personal hygiene is non- existent and a matter of direct conflict, refusing point blank to bathe or shower, wash hands, clean teeth. Clothes are miss matched, seldom changed and excessive, it is not uncommon to wear two pairs of leggings, three jumpers and knickers outside our trousers.

Deflection, changing tactics, gentle persuasion has all stopped working, instead we have stubbornness, refusal and sullen glares.

There is no end in sight, no relief, no respite, just vacuous platitudes from those who are meant to care for the sick, their hypocrisy is staggering.

It is a hollow time, a time of emptiness, of loss and falsehoods.
I read your post and I found it difficult to find adequate words to respond to you. You write in such an eloquent, direct but painfully raw way. I'm so sorry for how awful things are but I know that's of no help or comfort to you. I'm coping with the earlier stages of my husband's Alzheimer's and I find that difficult enough to deal with and cope with. I hope that you have some support/respite and you have spoken to your GP about how you feel. if not, I hope you can get some help - you need it.
 

canary

Registered User
Feb 25, 2014
25,419
0
South coast
I dont know how you are coping either
Your wife needs 24/7 care and this is unsustainable for a solo carer. Unfortunately, all the while you are there plugging the gaps and keeping her safe, SS will just let you carry on.
I think there is likely to be a crisis soon
(((((((((((((((((((((hugs)))))))))))))))
 

DeeCee7

Registered User
Oct 13, 2023
338
0
Oh @CoastalPair you have been coping with this terrible burden for over 4 years now. I referred back to your post of two years ago “Standing on the edge of the abyss and screaming” and how you are still standing is beyond my understanding. You said then that you had made a promise to your wife of no outside help or care homes, but that was then … and this is now. Surely your wife, if she had the ability now to be once again the person she was, would be saying to you, no more, you cannot go on doing this and I won’t allow it. Can you find it in yourself to allow others to take over now?
 

sunshine chrissy

Registered User
Apr 1, 2022
476
0
Cheshire
The wild and violent tides of life have taken a heavy toll, breaking down any resolve, sapping the strength, dimming the light and ushering in the blackness.

Everyday, every hour of everyday there is no relief and all the many and varied symptoms progressively spiral downwards.

A new development, sudden switches in temperament, displaying paranoia and anger for no reason against me, (her sole carer.)

This even extends to becoming verbally abusive, (but not violent as of yet.)

We already suffered with frequent mood swings, which normally display as increased anxiousness, frustration, and agitation, producing floods of tears and fears of being abandoned.

We are also currently experiencing an increase in confusion and disorientation with constantly wanting to go out, wandering and getting lost.

We are not aware of what the time of day is, what day or month it is. We are not aware any news or events, nor are we aware of the usual social boundaries.

There is constant obsessive and repetitive behaviour, moving objects, removing pictures from walls, pulling tags off coats and clothes and ripping insoles out of shoes.

We suffer delusions, we believe the presenters on television are living in our house, and that we have more than one dog.

We also regularly repeat entire imaginary conversations with strangers on the street and invent nonexistent problems and situations.

We have problems with speech, (aphasia) mixing words up, with conversations becoming surreal and not based in reality.

Every night our sleep is disturbed, sleeping for fifteen to twenty minutes before getting up, then folding and refolding the bed linen, dressing gowns and coats, while wandering about the house leaving every light on before returning to bed - to start the routine all over again twenty minutes later.

We now see and hear things that do not exist (hallucinations), and can have a whole conversation and argument with a non existent person.

All mirrors and reflective surfaces have had to be removed, all exterior door locked and keys hidden.

We cannot perform simple tasks, i.e. making tea, hovering, cooking and we cannot operate any gadgets or machines.

Personal hygiene is non- existent and a matter of direct conflict, refusing point blank to bathe or shower, wash hands, clean teeth. Clothes are miss matched, seldom changed and excessive, it is not uncommon to wear two pairs of leggings, three jumpers and knickers outside our trousers.

Deflection, changing tactics, gentle persuasion has all stopped working, instead we have stubbornness, refusal and sullen glares.

There is no end in sight, no relief, no respite, just vacuous platitudes from those who are meant to care for the sick, their hypocrisy is staggering.

It is a hollow time, a time of emptiness, of loss and falsehoods.
It brought tears to my eyes reading this,it's my story to the letter but you've written it beautifully.Every single word resounds with me,it was my journey until I could cope no longer.My Eddie went into permanent care last October,I'm still grieving,I still can't believe what happened,all our plans for retirement gone,he was 61 when diagnosed with FTD but here I am,my life is so much calmer now.it's taken so long to accept he'll never come home🥲I wish you well on this horrendous journey❤️
 

Lostinthisdesert

Registered User
Apr 21, 2023
50
0
The wild and violent tides of life have taken a heavy toll, breaking down any resolve, sapping the strength, dimming the light and ushering in the blackness.

Everyday, every hour of everyday there is no relief and all the many and varied symptoms progressively spiral downwards.

A new development, sudden switches in temperament, displaying paranoia and anger for no reason against me, (her sole carer.)

This even extends to becoming verbally abusive, (but not violent as of yet.)

We already suffered with frequent mood swings, which normally display as increased anxiousness, frustration, and agitation, producing floods of tears and fears of being abandoned.

We are also currently experiencing an increase in confusion and disorientation with constantly wanting to go out, wandering and getting lost.

We are not aware of what the time of day is, what day or month it is. We are not aware any news or events, nor are we aware of the usual social boundaries.

There is constant obsessive and repetitive behaviour, moving objects, removing pictures from walls, pulling tags off coats and clothes and ripping insoles out of shoes.

We suffer delusions, we believe the presenters on television are living in our house, and that we have more than one dog.

We also regularly repeat entire imaginary conversations with strangers on the street and invent nonexistent problems and situations.

We have problems with speech, (aphasia) mixing words up, with conversations becoming surreal and not based in reality.

Every night our sleep is disturbed, sleeping for fifteen to twenty minutes before getting up, then folding and refolding the bed linen, dressing gowns and coats, while wandering about the house leaving every light on before returning to bed - to start the routine all over again twenty minutes later.

We now see and hear things that do not exist (hallucinations), and can have a whole conversation and argument with a non existent person.

All mirrors and reflective surfaces have had to be removed, all exterior door locked and keys hidden.

We cannot perform simple tasks, i.e. making tea, hovering, cooking and we cannot operate any gadgets or machines.

Personal hygiene is non- existent and a matter of direct conflict, refusing point blank to bathe or shower, wash hands, clean teeth. Clothes are miss matched, seldom changed and excessive, it is not uncommon to wear two pairs of leggings, three jumpers and knickers outside our trousers.

Deflection, changing tactics, gentle persuasion has all stopped working, instead we have stubbornness, refusal and sullen glares.

There is no end in sight, no relief, no respite, just vacuous platitudes from those who are meant to care for the sick, their hypocrisy is staggering.

It is a hollow time, a time of emptiness, of loss and falsehoods.
Thank you for expressing so eloquently the depth and breadth of continuous unstoppable loss. You speak for me and many others. I am in tears reading it. And only those experiencing this pain can truly understand it. I can't let go because this is the person I have loved so dearly for so long. But I suffer every day. The rest of the world keeps going and so few people care or think it will ever happen to them. Scant comfort I know, but you are not alone
 

Neveradullday!

Registered User
Oct 12, 2022
3,596
0
England
@CoastalPair - everything you describe is very familiar to me - Planet Dementia.

What has helped me, apart from practical tips I've read on here to approach these behaviours, is being fully committed to my new role as carer.
Things have changed - our loved ones will never function in this world like they did. They're still our beautiful loved ones, though. We can do it.
 

notsogooddtr

Registered User
Jul 2, 2011
1,292
0
Not everyone can do it though no matter how commited.I think you are relatively young -imagine doing this fulltime and alone in your 70s or 80s.I do recognise though that there are different challenges for younger carers
 

Neveradullday!

Registered User
Oct 12, 2022
3,596
0
England
Not everyone can do it though no matter how commited.I think you are relatively young -imagine doing this fulltime and alone in your 70s or 80s.I do recognise though that there are different challenges for younger carers
You make good points, @notsogooddtr
The other posts were SO grim, I thought I'd balance them up a bit. Don't worry, I'll probably have a bad day soon - I was feeling good this morning.

I'm 59 (do it full time and alone). I do know it must be more challenging for people in their 70s/80s. Sorry if I offended anyone.
It's not a bowl of cherries for me, but I cope quite well. I suspect if it ever ends, I'll realise how bad it's really been (house arrest for 3 years and counting).
Respect to everyone.
 
Last edited:

JaxG

Registered User
May 15, 2021
839
0
The wild and violent tides of life have taken a heavy toll, breaking down any resolve, sapping the strength, dimming the light and ushering in the blackness.

Everyday, every hour of everyday there is no relief and all the many and varied symptoms progressively spiral downwards.

A new development, sudden switches in temperament, displaying paranoia and anger for no reason against me, (her sole carer.)

This even extends to becoming verbally abusive, (but not violent as of yet.)

We already suffered with frequent mood swings, which normally display as increased anxiousness, frustration, and agitation, producing floods of tears and fears of being abandoned.

We are also currently experiencing an increase in confusion and disorientation with constantly wanting to go out, wandering and getting lost.

We are not aware of what the time of day is, what day or month it is. We are not aware any news or events, nor are we aware of the usual social boundaries.

There is constant obsessive and repetitive behaviour, moving objects, removing pictures from walls, pulling tags off coats and clothes and ripping insoles out of shoes.

We suffer delusions, we believe the presenters on television are living in our house, and that we have more than one dog.

We also regularly repeat entire imaginary conversations with strangers on the street and invent nonexistent problems and situations.

We have problems with speech, (aphasia) mixing words up, with conversations becoming surreal and not based in reality.

Every night our sleep is disturbed, sleeping for fifteen to twenty minutes before getting up, then folding and refolding the bed linen, dressing gowns and coats, while wandering about the house leaving every light on before returning to bed - to start the routine all over again twenty minutes later.

We now see and hear things that do not exist (hallucinations), and can have a whole conversation and argument with a non existent person.

All mirrors and reflective surfaces have had to be removed, all exterior door locked and keys hidden.

We cannot perform simple tasks, i.e. making tea, hovering, cooking and we cannot operate any gadgets or machines.

Personal hygiene is non- existent and a matter of direct conflict, refusing point blank to bathe or shower, wash hands, clean teeth. Clothes are miss matched, seldom changed and excessive, it is not uncommon to wear two pairs of leggings, three jumpers and knickers outside our trousers.

Deflection, changing tactics, gentle persuasion has all stopped working, instead we have stubbornness, refusal and sullen glares.

There is no end in sight, no relief, no respite, just vacuous platitudes from those who are meant to care for the sick, their hypocrisy is staggering.

It is a hollow time, a time of emptiness, of loss and falsehoods.
I do not know how you are coping, please consider getting some help, you will become ill if you have to carry on like this. Sometimes a care home can be the best place for someone with advanced dementia, where she can get the support and care she needs. My husband goes to an amazing care home for respite, the staff are wonderful and honestly his quality of life is better because they have the time and experience to give him everything he needs.
 

notsogooddtr

Registered User
Jul 2, 2011
1,292
0
You make good points, @notsogooddtr
The other posts were SO grim, I thought I'd balance them up a bit. Don't worry, I'll probably have a bad day soon - I was feeling good this morning.

I'm 59 (do it full time and alone). I do know it must be more challenging for people in their 70s/80s. Sorry if I offended anyone.
It's not a bowl of cherries for me, but I cope quite well. I suspect if it ever ends, I'll realise how bad it's really been (house arrest for 3 years and counting).
Respect to everyone.
No offence taken
 

leny connery

Registered User
Nov 13, 2022
491
0
so many of of us in this situation. coping. grieving. how to let go? the love keeps us going. for me also the knowledge that he needs me, even if he does not know it.