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Stressed and exhausted

VillaJ

Registered User
Oct 5, 2021
13
0
Emotional numbness and overwhelming stress has been my life these last few weeks. My mothers melanoma cancer has amped up her dementia symptoms. Mothers 82years old and has been more and more delusional and short tempered. Constantly searching for things she claims people have stolen from her at all hours of the day and night she’ll be very restless. I put her things in sight to give her relief but there’s always something. She speaks of people who have passed away and feels the need to go visit them and help them and demands I take her. At times I forget that trying to make them understand the reality of things is next to impossible. People have told me to go along with her “reality” but when it gets out of hand and she acts on it at some point I need to put a stop and say to myself that’s enough. Keeping her busy is difficult, she sleeps at any given moment for moments at a time. She calls my name when she feels anxious or scarred of feeling left alone, nursing home or assisted living isn’t an option, she doesn’t take well with strangers and has always been depended on me. Trips to the hospital have been the norm and is when I stress out the most. Sleep is a luxury because I’m constantly trying to explain why people need blood work or tests etc. like walking on egg shells desperately avoiding my mother becoming agitated and angry at the people that want to help her including myself. Last thing I want is for her to feel like I’ve abandoned her. I quit my job and quit my business to be her full time caregiver. I’m 36 years old and I feel like my life is slipping away with fear that I won’t know how to cope with life when my mother is gone. Fear of being so far behind that my competition of younger folk will always have the upper hand in the working field. I don’t know how much time I still have with her I am extremely grateful God has blessed her with 80+ years of life at my side but I also understand I lost her a long time ago because she isn’t the lively person I remember her to be. Always singing and always in the kitchen. I’m constantly fearful of the day that I will see her no longer breathing and thinking to myself this is it this is where my life changes and the emptiness will consume me.The desperate attempt to fill a void in my heart with what I will consider pointless distractions and sleepless nights not by her restlessness but by my own haunting memories. I’m taking one day at a time and for many it’s an opportunity to get back to living life and experience what I’ve missed. That may be true but even though I feel emotionally and physically exhausted I’ll never be ready to let go.
Feeling alone…
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,693
0
Kent
I`m so sorry @VillaJ. Sometimes when the emotions take over it`s really hard to make life as good as it could be in spite of the challenges you face.

It`s important you take time to look after yourself as well as your mother otherwise you might end up being unable to do either.

Please try to get some help in. If your mother won`t accept help get some in for yourself. This is what I did to enable my husband to get used to having strangers in the home and it worked well.
 

canary

Registered User
Feb 25, 2014
16,170
0
South coast
Hi @VillaJ
Its very difficult when they have delusions that they insist on acting upon, but going along with the delusion doesnt mean that you have to help them act on them. For example, when she says that she wants to visit long dead relatives would she accept it if you said that they were on holiday and you would take her when they got back? Alternatively, could you pretend to phone them to let them know you are coming and then say they must be out and you will try again later? You have to be sneaky and come up with excuses that fit their reality.
 

Cazcaz

Registered User
Apr 3, 2021
176
0
Emotional numbness and overwhelming stress has been my life these last few weeks. My mothers melanoma cancer has amped up her dementia symptoms. Mothers 82years old and has been more and more delusional and short tempered. Constantly searching for things she claims people have stolen from her at all hours of the day and night she’ll be very restless. I put her things in sight to give her relief but there’s always something. She speaks of people who have passed away and feels the need to go visit them and help them and demands I take her. At times I forget that trying to make them understand the reality of things is next to impossible. People have told me to go along with her “reality” but when it gets out of hand and she acts on it at some point I need to put a stop and say to myself that’s enough. Keeping her busy is difficult, she sleeps at any given moment for moments at a time. She calls my name when she feels anxious or scarred of feeling left alone, nursing home or assisted living isn’t an option, she doesn’t take well with strangers and has always been depended on me. Trips to the hospital have been the norm and is when I stress out the most. Sleep is a luxury because I’m constantly trying to explain why people need blood work or tests etc. like walking on egg shells desperately avoiding my mother becoming agitated and angry at the people that want to help her including myself. Last thing I want is for her to feel like I’ve abandoned her. I quit my job and quit my business to be her full time caregiver. I’m 36 years old and I feel like my life is slipping away with fear that I won’t know how to cope with life when my mother is gone. Fear of being so far behind that my competition of younger folk will always have the upper hand in the working field. I don’t know how much time I still have with her I am extremely grateful God has blessed her with 80+ years of life at my side but I also understand I lost her a long time ago because she isn’t the lively person I remember her to be. Always singing and always in the kitchen. I’m constantly fearful of the day that I will see her no longer breathing and thinking to myself this is it this is where my life changes and the emptiness will consume me.The desperate attempt to fill a void in my heart with what I will consider pointless distractions and sleepless nights not by her restlessness but by my own haunting memories. I’m taking one day at a time and for many it’s an opportunity to get back to living life and experience what I’ve missed. That may be true but even though I feel emotionally and physically exhausted I’ll never be ready to let go.
Feeling alone…
Welcome to the most helpful place on the web for carers of PWD.

Do you live with your mother in her house? Do you have any siblings who could help? What about friends who could “pop round”, which could then be used as an introduction to carers coming round. Slide from one to the other seamlessly?

Contact SS for help asap. And above all try to find time to rest, if you burn yourself out it’ll be no help to her or you.
 

Seaholly

Registered User
Oct 12, 2020
112
0
You sound so like me!!!
I walked away from my career for mum and 4 years' later, I am still wondering how it will all end (and when I will get a good night's sleep again)
I spent this afternoon offering chocolate to a bunch of totally (to me) invisible people and trying to get my head around the fact that mum was constantly asking the adult me when the child me would be home from school. I am constantly mentally bracing myself for the accusations of being selfish, trying to abandon her and taking her money and then moved to tears by how kind and loving she is at other times.

The truth is that dementia is just a nasty disease! One of the best reads I had is the Stumped Town Dementia blog, which is still available, although the author's mum, the PWD, has now passed away. It's such an honest account of what dementia does to that mother-daughter dynamic.

I did something today that I found really helpful. I saw a job flagged up that I know I could do if I wasn't doing this and I used Mum's snooze time to practice pulling together an application. I read it back to myself in amazement, thinking, "Who is this woman? She's actually really employable!" I started working towards a professional qualification just before I had to drop everything and care for mum and I was already seeing myself as 'maybe too old' and going in via the 'experience' route. The youngest I can possibly be now when I finally reach my goal is 50, but so what? So what if I am up against people 10 or even 20 years younger than me? I have more to bring to the table and so do you. Taking care of a person with dementia takes guts! It takes levels of self-awareness, empathy and patience that I bet you had no idea you could achieve. Imagine taking those skills back into the workplace.

I am lucky in that mum did agree to a few care shifts, so I managed until 6 months ago to eke out a bit of consultancy work, but it became very hard in the end. However, it made me appreciate my profession so much more and unlike when I was on the hamster-wheel of full-time work, I have actually began to peek through professional journals and start to become genuinely enthusiastic and optimistic about my former profession again.

Please don't despair! You are not going to emerge from this as a has-been. You are going to emerge as an asset to any employer!
 

PatRayH

Registered User
Aug 16, 2021
110
0
I sometimes employ the trick of saying that I will have to go away and investigate what ever the subject of her delusion is and say that it will take me some time, that way you are neither accepting or denying what shes told you.
 

VillaJ

Registered User
Oct 5, 2021
13
0
Hi @VillaJ
Its very difficult when they have delusions that they insist on acting upon, but going along with the delusion doesnt mean that you have to help them act on them. For example, when she says that she wants to visit long dead relatives would she accept it if you said that they were on holiday and you would take her when they got back? Alternatively, could you pretend to phone them to let them know you are coming and then say they must be out and you will try again later? You have to be sneaky and come up with excuses that fit their reality.
Thank you it’s a creative idea I need practice and helps to hear it from someone to even realize there’s quite simple ways that make a difference. My brain fog makes it difficult but am really grateful for this platform. Thank you 🙏🏻
 

VillaJ

Registered User
Oct 5, 2021
13
0
Welcome to the most helpful place on the web for carers of PWD.

Do you live with your mother in her house? Do you have any siblings who could help? What about friends who could “pop round”, which could then be used as an introduction to carers coming round. Slide from one to the other seamlessly?

Contact SS for help asap. And above all try to find time to rest, if you burn yourself out it’ll be no help to her or you.
I have one older brother who doesn’t show much support. He knows about her because my mother has an urge to have me call him on the phone. No friends I’m very much an introvert since I quit my job I have no social life. My husband is the only one. My nieces and everyone else have their lives and don’t seem to no interest in sharing my stress. I suppose I can’t blame them Its overwhelming but am building a great deal of resentment. My mother doesn’t take well to unfamiliar faces. To care for her she seeks me. My mother lives with me. Thing is now with cancer too I’m constantly trying to figure out why she’s having certain ailments her body is going through so much. And I’m trying to stay on top of things to ease her pain. I walk around like I’ve been punched in the stomach feeling. I know my worries are making me sick. I just don’t know what to do or how to feel about anything. I need answers to questions only time will tell and that’s frustrating.
 

wonderfulmum

Registered User
Aug 20, 2015
47
0
Emotional numbness and overwhelming stress has been my life these last few weeks. My mothers melanoma cancer has amped up her dementia symptoms. Mothers 82years old and has been more and more delusional and short tempered. Constantly searching for things she claims people have stolen from her at all hours of the day and night she’ll be very restless. I put her things in sight to give her relief but there’s always something. She speaks of people who have passed away and feels the need to go visit them and help them and demands I take her. At times I forget that trying to make them understand the reality of things is next to impossible. People have told me to go along with her “reality” but when it gets out of hand and she acts on it at some point I need to put a stop and say to myself that’s enough. Keeping her busy is difficult, she sleeps at any given moment for moments at a time. She calls my name when she feels anxious or scarred of feeling left alone, nursing home or assisted living isn’t an option, she doesn’t take well with strangers and has always been depended on me. Trips to the hospital have been the norm and is when I stress out the most. Sleep is a luxury because I’m constantly trying to explain why people need blood work or tests etc. like walking on egg shells desperately avoiding my mother becoming agitated and angry at the people that want to help her including myself. Last thing I want is for her to feel like I’ve abandoned her. I quit my job and quit my business to be her full time caregiver. I’m 36 years old and I feel like my life is slipping away with fear that I won’t know how to cope with life when my mother is gone. Fear of being so far behind that my competition of younger folk will always have the upper hand in the working field. I don’t know how much time I still have with her I am extremely grateful God has blessed her with 80+ years of life at my side but I also understand I lost her a long time ago because she isn’t the lively person I remember her to be. Always singing and always in the kitchen. I’m constantly fearful of the day that I will see her no longer breathing and thinking to myself this is it this is where my life changes and the emptiness will consume me.The desperate attempt to fill a void in my heart with what I will consider pointless distractions and sleepless nights not by her restlessness but by my own haunting memories. I’m taking one day at a time and for many it’s an opportunity to get back to living life and experience what I’ve missed. That may be true but even though I feel emotionally and physically exhausted I’ll never be ready to let go.
Feeling alone…
You are not alone at all, I read this as if I'd written it myself, I'm going through exactly every stress and emotion, concern and feelings that you are. It is difficult and yes being a PWD carer it does take you off your own path and it's scary, but we will get thru and the latter challenges might lead to new paths I'm hoping. Please look after yourself and know you are not alone
 

Duggies-girl

Registered User
Sep 6, 2017
2,916
0
I have one older brother who doesn’t show much support. He knows about her because my mother has an urge to have me call him on the phone. No friends I’m very much an introvert since I quit my job I have no social life. My husband is the only one. My nieces and everyone else have their lives and don’t seem to no interest in sharing my stress. I suppose I can’t blame them Its overwhelming but am building a great deal of resentment. My mother doesn’t take well to unfamiliar faces. To care for her she seeks me. My mother lives with me. Thing is now with cancer too I’m constantly trying to figure out why she’s having certain ailments her body is going through so much. And I’m trying to stay on top of things to ease her pain. I walk around like I’ve been punched in the stomach feeling. I know my worries are making me sick. I just don’t know what to do or how to feel about anything. I need answers to questions only time will tell and that’s frustrating.
Your story was mine up until almost two years ago, I used to describe it as being punched at every obstacle, it really is like a physical punch that leaves you winded. Dad had cancer as well as dementia and it is so hard explaining everything over and over again at appointments etc. Dad always thought the hospital was a garden centre and wanted to buy a plant.

Families do disappear, well in my experience they do, like a puff of wind, poof, there they go off to enjoy themselves again. You have to get some help somehow, a bit of time to yourself, an outing of some kind. I used to hide in Asda's cafe for a cup of coffee just to be by myself for 20 minutes until they turned it into a McDonalds. Seriously you need some help before you go under and you sound near to breaking point. I was there until the end and it is a very hard and thankless place to be. I hope someone has some good ideas to help you. Keep posting as you will get a lot of support here.

I found 'The Selfish Pig's Guide to Caring' helped me a lot, I picked it up cheap on Amazon. It's worth a look.
 

PatRayH

Registered User
Aug 16, 2021
110
0
Went to visit mum for a few days and gave her so many hugs and a very long hug that went on for ages....and ages....not hugged her like that since I was a very young boy.....' you're a very good boy ' she said ' oh I haven't called you that for many years ' those words made me so happy because it showed that she was back in the present.
 

VillaJ

Registered User
Oct 5, 2021
13
0
Your story was mine up until almost two years ago, I used to describe it as being punched at every obstacle, it really is like a physical punch that leaves you winded. Dad had cancer as well as dementia and it is so hard explaining everything over and over again at appointments etc. Dad always thought the hospital was a garden centre and wanted to buy a plant.

Families do disappear, well in my experience they do, like a puff of wind, poof, there they go off to enjoy themselves again. You have to get some help somehow, a bit of time to yourself, an outing of some kind. I used to hide in Asda's cafe for a cup of coffee just to be by myself for 20 minutes until they turned it into a McDonalds. Seriously you need some help before you go under and you sound near to breaking point. I was there until the end and it is a very hard and thankless place to be. I hope someone has some good ideas to help you. Keep posting as you will get a lot of support here.

I found 'The Selfish Pig's Guide to Caring' helped me a lot, I picked it up cheap on Amazon. It's worth a look.
Thank you I will look into that book. I do a lot of reading since leaving my house is difficult, leaving her is difficult. Music is my life without it I don’t know what I would do. It’s amazing how some few hours of quality sleep can help bare the toughest moments. Deep breaths and make better judgments. I pray for strength what else can I do when I don’t have many options. I know the circumstances won’t change but how I handle them. Grateful for this platform thank you for your feedback.
 

VillaJ

Registered User
Oct 5, 2021
13
0
You are not alone at all, I read this as if I'd written it myself, I'm going through exactly every stress and emotion, concern and feelings that you are. It is difficult and yes being a PWD carer it does take you off your own path and it's scary, but we will get thru and the latter challenges might lead to new paths I'm hoping. Please look after yourself and know you are not alone
Thank you for your kind words. I never knew how difficult it can be caring for a PWD. I don’t mean to seem selfish and ungrateful Lord knows if it had to be someone I would do it all over again. One day it will all be over which I also dread. I keep repeating to myself God wouldn’t give us anything we can’t handle and even though that’s how it seems I trust Gods plan.
 

Emac

Registered User
Mar 2, 2013
189
0
Thank you for your kind words. I never knew how difficult it can be caring for a PWD. I don’t mean to seem selfish and ungrateful Lord knows if it had to be someone I would do it all over again. One day it will all be over which I also dread. I keep repeating to myself God wouldn’t give us anything we can’t handle and even though that’s how it seems I trust Gods plan.
There is nothing selfish about someone who is sacrificing their whole life to care for someone with dementia as you are doing. You sound completely overwhelmed by her needs. Please try and take a breath, recognise what a good daughter you are and take some tips from others to find time for you. I Feel the same conflicting emotions even though Mum is noW in a care home. Visiting her makes me sad, and there is always a problem ( like lockdown) or a care home covid out break, or another stage in the downward slide of dementia to come to terms with. I go between wishing it was all over and I didn’t have to deal with it any more and feeling guilty and sad because in spite of this journey being long and difficult I will miss her terribly when she is gone.
 

Fatigued

Registered User
Aug 21, 2021
12
0
Emotional numbness and overwhelming stress has been my life these last few weeks. My mothers melanoma cancer has amped up her dementia symptoms. Mothers 82years old and has been more and more delusional and short tempered. Constantly searching for things she claims people have stolen from her at all hours of the day and night she’ll be very restless. I put her things in sight to give her relief but there’s always something. She speaks of people who have passed away and feels the need to go visit them and help them and demands I take her. At times I forget that trying to make them understand the reality of things is next to impossible. People have told me to go along with her “reality” but when it gets out of hand and she acts on it at some point I need to put a stop and say to myself that’s enough. Keeping her busy is difficult, she sleeps at any given moment for moments at a time. She calls my name when she feels anxious or scarred of feeling left alone, nursing home or assisted living isn’t an option, she doesn’t take well with strangers and has always been depended on me. Trips to the hospital have been the norm and is when I stress out the most. Sleep is a luxury because I’m constantly trying to explain why people need blood work or tests etc. like walking on egg shells desperately avoiding my mother becoming agitated and angry at the people that want to help her including myself. Last thing I want is for her to feel like I’ve abandoned her. I quit my job and quit my business to be her full time caregiver. I’m 36 years old and I feel like my life is slipping away with fear that I won’t know how to cope with life when my mother is gone. Fear of being so far behind that my competition of younger folk will always have the upper hand in the working field. I don’t know how much time I still have with her I am extremely grateful God has blessed her with 80+ years of life at my side but I also understand I lost her a long time ago because she isn’t the lively person I remember her to be. Always singing and always in the kitchen. I’m constantly fearful of the day that I will see her no longer breathing and thinking to myself this is it this is where my life changes and the emptiness will consume me.The desperate attempt to fill a void in my heart with what I will consider pointless distractions and sleepless nights not by her restlessness but by my own haunting memories. I’m taking one day at a time and for many it’s an opportunity to get back to living life and experience what I’ve missed. That may be true but even though I feel emotionally and physically exhausted I’ll never be ready to let go.
Feeling alone…
First of all, give yourself a pat on the back for all the sacrifice you have undertaken. I bet no-one has said what a wonderful person you are for all you have done and are doing – be assured of the admiration from many who have read your words. It’s time to pick yourself up, take a deep breath and congratulate yourself for all you have done despite the lack of a “thank you” you deserve. Don’t think that the world is moving on and leaving you behind. These dark thoughts are the result of being absolutely knackered and feeling as though your head is like a bucket rattling after being whacked by a cricket bat. I want you to consider these words: Adaptability, planning, responsibility, toughness, empathy and amongst others resilience. These are things you are doing daily and without thought. To me it sounds like a very employable person. So whilst you feel the world is drifting away, you are in fact developing incredible skills.

Music may provide a little respite. In the case of my mum who has Alzheimers, songs calm her, or can result in a good mood. There is a “Alzheimers Radio” (look it up) who play songs from many different decades and it’s very likely they will play tunes your mum will enjoy – and give you respite, even if for a few minutes (precious time). Additionally, there is “singing for dementia” (again look on the net) where through Zoom its like being with others and songs of different eras are played where singing is encouraged. It helped in my case (again precious minutes).

This is a dreadful disease and really tests us to our limits. Although you may feel its a luxury, please don’t be too proud to ask to find help so you can get rest, re-charge your batteries and feel better. You deserve it.
Don't feel alone - there is a community at this forum where you can let off steam.
 

VillaJ

Registered User
Oct 5, 2021
13
0
There is nothing selfish about someone who is sacrificing their whole life to care for someone with dementia as you are doing. You sound completely overwhelmed by her needs. Please try and take a breath, recognise what a good daughter you are and take some tips from others to find time for you. I Feel the same conflicting emotions even though Mum is noW in a care home. Visiting her makes me sad, and there is always a problem ( like lockdown) or a care home covid out break, or another stage in the downward slide of dementia to come to terms with. I go between wishing it was all over and I didn’t have to deal with it any more and feeling guilty and sad because in spite of this journey being long and difficult I will miss her terribly when she is gone.
Thank you for sharing, I find it so helpful to know I’m not alone. May God bless you and your family every step of the way.
 

VillaJ

Registered User
Oct 5, 2021
13
0
First of all, give yourself a pat on the back for all the sacrifice you have undertaken. I bet no-one has said what a wonderful person you are for all you have done and are doing – be assured of the admiration from many who have read your words. It’s time to pick yourself up, take a deep breath and congratulate yourself for all you have done despite the lack of a “thank you” you deserve. Don’t think that the world is moving on and leaving you behind. These dark thoughts are the result of being absolutely knackered and feeling as though your head is like a bucket rattling after being whacked by a cricket bat. I want you to consider these words: Adaptability, planning, responsibility, toughness, empathy and amongst others resilience. These are things you are doing daily and without thought. To me it sounds like a very employable person. So whilst you feel the world is drifting away, you are in fact developing incredible skills.

Music may provide a little respite. In the case of my mum who has Alzheimers, songs calm her, or can result in a good mood. There is a “Alzheimers Radio” (look it up) who play songs from many different decades and it’s very likely they will play tunes your mum will enjoy – and give you respite, even if for a few minutes (precious time). Additionally, there is “singing for dementia” (again look on the net) where through Zoom its like being with others and songs of different eras are played where singing is encouraged. It helped in my case (again precious minutes).

This is a dreadful disease and really tests us to our limits. Although you may feel its a luxury, please don’t be too proud to ask to find help so you can get rest, re-charge your batteries and feel better. You deserve it.
Don't feel alone - there is a community at this forum where you can let off steam.