Guilt of needing respite.

campbell77

Registered User
Dec 4, 2016
6
0
Mums lived with me my husband and our son whos now grown up and has a family of his own for14yrs the last 4 have been increasingly hard.She started to become different approx 4yrs ago and was diagnosed 2 1/2yrs ago with altzeimers.This is the first year I have been able to get her to go for respite as she has become increasingly reliant for daily living...having had some bad falls.
We have good days and terrible days.On the good ones I feel so guilty at getting help and on the bad ones i feel desperate that i cant cope.I love her dearly but struggle to except that little by little i lose a part of her everyday.When shes in for respite tho i miss her so much and i dont want her to die.But being a aux nurse for dementia care i know whats round the corner and just hopes she does not suffer to long.Basically i feel guilty most of the time especially at xmas.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello, @campbell77, I see you’re new around here! Welcome, but I’m sorry you have had to join us...your poor Mum and poor you. I’ve not been on the forum very long...but I have joined in with one aspect...we refer to the guilt monster (GM) and we give him no room. All the anger you feel towards dementia...harness it....hold it ...and give him the hugest whack round the head.
We are very hard on ourselves. As an ex nurse, how many times have you heard patient’s relatives apologise because they ‘could not do more’. And how many times have you comforted them and told them what a good and loving job they have done? We say we should treat others as we would like to be treated. I think we should treat ourselves as we treat others. Give yourself a pat on the back for what you have done and are doing for your mum.
As for feeling you don’t need the respite when things are going well!! I know that one! I’m in the process of sorting some care to get an an occasional night off. And in the last week I had two nights sleep...and started thinking, well, I don’t need a night off after all. I had forgotten so soon that the last two nights off were in August! So, I will sort the respite...maybe I needed a bad night tonight, to remind me! Because yesterday I was feeling AWFUL that I was arranging respite.
Hmm...maybe I need to give the GM a mighty whack too!
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Welcome from me too. I think guilt is something we all feel around this illness. We desperately want to help/make things alright etc. for our loved ones, and we can't, and we end up feeling guilty that we can't, guilty that we get so exhausted, guilty that we occasionally get impatient. Guilty that after all, we are just us, and can't be everything needed. However, this is a false guilt, and shouldn't be given house room!

@canary I believe has a very nice guilt monster stick emoticon!
 

campbell77

Registered User
Dec 4, 2016
6
0
Hello, @campbell77, I see you’re new around here! Welcome, but I’m sorry you have had to join us...your poor Mum and poor you. I’ve not been on the forum very long...but I have joined in with one aspect...we refer to the guilt monster (GM) and we give him no room. All the anger you feel towards dementia...harness it....hold it ...and give him the hugest whack round the head.
We are very hard on ourselves. As an ex nurse, how many times have you heard patient’s relatives apologise because they ‘could not do more’. And how many times have you comforted them and told them what a good and loving job they have done? We say we should treat others as we would like to be treated. I think we should treat ourselves as we treat others. Give yourself a pat on the back for what you have done and are doing for your mum.
As for feeling you don’t need the respite when things are going well!! I know that one! I’m in the process of sorting some care to get an an occasional night off. And in the last week I had two nights sleep...and started thinking, well, I don’t need a night off after all. I had forgotten so soon that the last two nights off were in August! So, I will sort the respite...maybe I needed a bad night tonight, to remind me! Because yesterday I was feeling AWFUL that I was arranging respite.
Hmm...maybe I need to give the GM a mighty whack too!
Thankyou. We are very good at giving advice but not always at taking it ar'nt we.i dont know which is the worst slowly watching the person you love disappear before your eyes or processing the guilt of wishing the suffering would end for them .Peoplele are very good at offering support when you are berieved by death but dont know how to spk to you when you are going this type of loss.dementia is so isolating for the victims and the carers.No two hrs are redictable let alone dys weeks or mths.x
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, @Campbell, I think that unless you have actual experience of dementia you dont have any idea about what it is like. I think that most of us have wished that our relative would simply pass away, so dont feel guilty.
You need to be able to have a rest so that you can keep on going - if you are ill or have a breakdown then she would have to go into a care home anyway.
Get rid of that guilt and take your respite

@canary I believe has a very nice guilt monster stick emoticon!
t0153.gif
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Yes, @Campbell, I think that unless you have actual experience of dementia you dont have any idea about what it is like. I think that most of us have wished that our relative would simply pass away, so dont feel guilty.
You need to be able to have a rest so that you can keep on going - if you are ill or have a breakdown then she would have to go into a care home anyway.
Get rid of that guilt and take your respite


t0153.gif
Thanks, @canary ! I've searched for that emoticon, and couldn't find it anywhere!

@HarrietD couldn't we add something like this to TP stash of smilies? We really need a Guilt Monster Stick smiley!!
 

campbell77

Registered User
Dec 4, 2016
6
0
Thankyou. We are very good at giving advice but not always at taking it ar'nt we.i dont know which is the worst slowly watching the person you love disappear before your eyes or processing the guilt of wishing the suffering would end for them .Peoplele are very good at offering support when you are berieved by death but dont know how to spk to you when you are going this type of loss.dementia is so isolating for the victims and the carers.No two hrs are redictable let alone dys weeks or mths.x
So true thankyou
 

campbell77

Registered User
Dec 4, 2016
6
0
Life is not any easier.mums bad days happen more often not very good at talking some days..frustrated and wanting to die in equal measures....Bigest stress of looking after her is funding care costs for what is a terminal illness of unknown length.Due to cicumstance money is tied up in our home and scared for the future.something ee dont need on to of everything else...!!!
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Life is not any easier.mums bad days happen more often not very good at talking some days..frustrated and wanting to die in equal measures....Bigest stress of looking after her is funding care costs for what is a terminal illness of unknown length.Due to cicumstance money is tied up in our home and scared for the future.something ee dont need on to of everything else...!!!
I see that the last time I wrote to you was back in December ...since then, my husband has moved into a supported living apartment. I hadn’t realised how near to the end of our lives together we were. I hadn’t realised how tired I was. Maybe you are in the same situation? That you joined this forum when you were feeling pretty desperate? As far as the money is concerned, do you mean your mum’s money is tied up in your house? Because you do not have to pay for her care. And if she cannot, then it becomes the LA responsibility. That does make things harder, though. Because if they are paying, they have to assess her as needing care. Have you had formal assessments yet? You, as carer, are entitled to one too. It would be a good first step in any case. You can request an assessment, https://www.ageuk.org.uk/informatio...one/can-carers-get-help-from-social-services/.
If your mum’s money is tied up in your house, then I am not sure how the financial assessment of her assets works...but I expect someone else on the forum will know! I have a vague feeling that it would only be disregarded if an adult living in ‘her’ house was disabled...or if there were young children, but I’m really not sure.