17 hrs! Exhausted!

[Lemondrop]

Is it awful to feel resentful and wishing the person you love so much...will be gone by morning? Am so tired..but keep going. Tired of hearing one minute I want to die..then when others come in. I'm gonna live to 100... She 94 and stubborn and determined. She very weak physically but mentally strong! Ask her age? She 26!

 

[Rosnpton]

You are just being honest and saying what a lot of us will have thought st some point in caring for pwds.
Mum is 87 riddled with arthritis ,can't walk,toilet,wash etc etc.whenever I've been at a & e with her following a fall or when scalded herself,I'm told how strong her heart and lungs are for a women of her age . Last time after 8hrs overnight and exhausted I snapped at the doctor saying that was the last thing I wanted to hear.

Thinking of you
Ros x

 

[Rageddy Anne]

You are just being honest and saying what a lot of us will have thought st some point in caring for pwds.
Mum is 87 riddled with arthritis ,can't walk,toilet,wash etc etc.whenever I've been at a & e with her following a fall or when scalded herself,I'm told how strong her heart and lungs are for a women of her age . Last time after 8hrs overnight and exhausted I snapped at the doctor saying that was the last thing I wanted to hear.

Thinking of you
Ros x

Understand completely...why would anyone in the medical profession think a strong heart in a person with advanced Dementia be good news for an exhausted carer?

I've been caring for my husband with Dementia for years, and my father before that. I'm totally exhausted and have recently been told I have cancer...Not surprised, because I've been neglecting myself for years...

 

[Lemondrop]

Another long day....I am thinking bout respite but can't bring myself to say to mum. I really need time alone in my house...not a holiday or pampering etc ( would be nice though)....just want to get up at my leisure..do things I want to do...last break was for a week in April...that was first in 2 yrs...my best friend told me today...what happens if you get ill? Looking into respite tomorrow ....yet I feel awful as I made a promise to mum! Mum holds me to it...been another day of grumpy, confused, sorry, hate you, love you and so forth!

 

[margherita]

Another long day....I am thinking bout respite but can't bring myself to say to mum. I really need time alone in my house...not a holiday or pampering etc ( would be nice though)....just want to get up at my leisure..do things I want to do...last break was for a week in April...that was first in 2 yrs...my best friend told me today...what happens if you get ill? Looking into respite tomorrow ....yet I feel awful as I made a promise to mum! Mum holds me to it...been another day of grumpy, confused, sorry, hate you, love you and so forth!

Hi Lemondrop!
It may be considered selfish of me, but I think promises should be kept as long as it is possible and reasonable to keep them.
It is no good either for you or your mother going on like that
A hug!!!

 

[father ted]

Lemon drop, my Mum is the same. Tells me she hopes she doesn't wake up, she'd be better of dead. Someone visits and asks how she is "Oh, mustn't grumble, no one likes a moaner"!!! Mum lives with me.

And I know what you mean about spending time in your own house not necessarily going away. But of course the assumption is that you want to go away when maybe all you want to do is potter around your own home or invite friends over.

My Mum is fairly capable in self care but needs to be fed, watered, medicated all of which she could not manage. I manage to get away with help of my husband and sitters for a few nights but nothing more. A family member has offered to have Mum for a week to give me a break on the pretext that it was a holiday for Mum but she refused to go. I have looked into live in care but quite complex and some on here suggested respite but today I went to visit a few and one was very nice, but the others honestly were awful. Tiny dark rooms, no en suite, no activities going on, no interaction between staff and residents. I know when you visit it is only a snapshot of a moment in time but still speaks volumes and the place looked like it had not been decorated in ages so no investment in the place at all. Will be looking again at live in care.

 

[Rageddy Anne]

We had someone who would visit us at home, introduced as just another friend of our son and daughter in law. The young man started by simply having a coffee with us, then one day he suggested they go out for a coffee while I washed my hair, and their outings became longer until eventually they would be out all day, golf driving range,local wildlife park, pub lunch, and then he was able to keep my husband company at night while I spent a night elsewhere...
My husband never knew it was all orchestrated and that I paid him.

Eventually my husband did need to move to a care home, but we managed for a lot longer with the "friend" who has, of course, become a real friend.He still visits my husband in his care home, so that some days I don't need to.

 

[Lemondrop]

Can't make a decision to respite...sitting here watching mum on monitor trying to see the time on her clock! Looking now for 15 mins! Dreading her ringing her bell! Would a care home monitor my mum, she scared and wanting reassurances? Happily just chewing a whethers soft toffee! No...now trying to get out of bed! talk soon

 

[Lemondrop]

Ah bless! She rang her bell...had Mother Nature ring her So! My back is broke again..as it normally takes 2 ppl to get her transferred! Back to sleep like a baby....not before saying I hope all this doesn't start again? She keeps talking bout arguments? I think sometime I get to place of...omg? What have I said? Have I done something? Thank god for this forum and reading likeminded posts....it's been a blessing! Right...I am off to bed now...zzzzz really needed...never mind 17 hrs! It's been 18 1/2 Today...thank you everyone for your words of knowledge and wisdom x

 

[Harrys daughter]

Hi Lemondrop. Some promises are made without full understanding on either side of what they will entail. They can even become humanly impossible to keep. I recognise your exhaustion in your words as have just been through the exact same scenario myself. My Mum is 93 and I have lived with her to care for her for over 2 years now. The problem with respite seems to be that the person with dementia has to agree to it (presuming they still have mental capacity). As no-one wants to willingly take themselves off to a care home and certainly not someone who is confused, forgetful and frightened, this makes things difficult to begin with. However, I would strongly advise you to try and arrange this. 2 weeks ago, after providing 24/7 care for my own Mum, I just reached the point where I could no longer carry on. I think it's the sleep deprivation that is the worst. Mum has been housebound with other medical conditions for over a year and I too have consequently, been unable to leave the flat at all for 9 months as we are managing without any carers or respite in place. I contacted SS and they arranged emergency respite for her, but that alone created another whopping great dose of stress all round which is still continuing. Have you thought of a daycare centre for your Mum? I don't know whether she is self-funding or local authority funded, because that will make a difference to how you go about arranging this. You would be able to go with her and spend time there for her first visit and in this way, may be able to persuade her to go regularly? It's very difficult, but I do know that unless you fight for your own rest and respite, you will not get any from anywhere! Sad but true. You need a break before you break. My Mum is coming home next week and by then I will have had 3 weeks break. My first in 2 years. I wish you luck in managing to sort this. Most importantly, DO NOT FEEL GUILTY!! You need to be fit and well in order to care for your Mum. If you break down through lack of rest, there will be no-one to care for her anyway. If I can help in anyway, please let me know.

Excellent advice x

 

[Oh Knickers]

Lemondrop,

Raising a point with regards to care homes and your anxieties over your mum's anxieties. Once settled, and this can take time. Once settled your mum will be receiving benefit of more company and stimulation. It is likely she is then more tired and thus sleeps better.

By being more stimulated she is likely to be, over time, less anxious as well.

You are sounding as though you need a break. Is there any chance of respite so you can re-gather your own internal resources and energy?

 

[Lemondrop]

Oh my....so guilty!
Yes I feel justified in all my tiredness etc to have had the same feelings like many of us carers. I do need a break...however the turn of events from Sunday morning, is leaving me feeling totally broken with a feeling not of guilt but maybe something similar.
Mum is now totally bed bound, syringe driver installed and Marie Curie nurses on call. From tomorrow night they are offering night sits. The relief in one way is weighed down looking at how frail and how far down my mum is right now. Still she blames me for bringing her so far down...just waiting now for last sedative to kick in. I know one day I will think, why did I moan about being awake from 4.30am to 01.30am....?
The break will soon be permanent, and I can't even think?
Thank God mums GP had her as palliative a long time ago and had the foresight to know how to have mum at home til the end.
We as a family know the end is near, no hospital! That was her biggest fear and thankfully that has not and will not happen.
Just took the chance to reply while waiting for her meds to kick in..she been kicked to a peaceful sleep, nowI am going to get a few zzzz's

 

[Shedrech]

get some rest Lemondrop
it's good that you have a thoughtful GP and that the Marie Curie nurses will be supporting you at this exhausting and challenging time
sleep well

 

[Izzy]

Thinking of you and your mum. I hope you managed some sleep.

I remember how good the Marie Cure nurses were when we got to the stage with my mum. It was such a relief to have them. It gave me the chance to recharge a bit and face what the next day brought.

Wishing you strength.

 

[Cat27]

I wish you strength for the coming days lemondrop.

 

[jorgieporgie]

It is so hard watching our loved ones suffering, my thoughts and prayers are with you Lemonjucie xx

 

[Harrys daughter]

Oh my....so guilty!
Yes I feel justified in all my tiredness etc to have had the same feelings like many of us carers. I do need a break...however the turn of events from Sunday morning, is leaving me feeling totally broken with a feeling not of guilt but maybe something similar.
Mum is now totally bed bound, syringe driver installed and Marie Curie nurses on call. From tomorrow night they are offering night sits. The relief in one way is weighed down looking at how frail and how far down my mum is right now. Still she blames me for bringing her so far down...just waiting now for last sedative to kick in. I know one day I will think, why did I moan about being awake from 4.30am to 01.30am....?
The break will soon be permanent, and I can't even think?
Thank God mums GP had her as palliative a long time ago and had the foresight to know how to have mum at home til the end.
We as a family know the end is near, no hospital! That was her biggest fear and thankfully that has not and will not happen.
Just took the chance to reply while waiting for her meds to kick in..she been kicked to a peaceful sleep, nowI am going to get a few zzzz's

Hi lemondrop
Get a rest everything you do is right for you and your dear mum the guiltmonster
Will be there whatever you do it's normal sadly x

 

[Lemondrop]

Well....I am getting the permanent break! The break that I never wanted! I just wanted to recharge my batteries, that was all. Mum passed and I really don't know what to do now. It's been the worst ever few weeks I have ever experienced....tiredness doesn't even compare...I would rather be posting about being tired than posting how lost, numb, lonely and EMPTY I feel.
Mum passed in my arms, in my home...not in a hospital nor hospice. Yes she had a hospital bed which she would tell anyone who would listen...you should buy one of these beds...the most comfortable thing ever. It actually was a fabulous bed with an air mattress...it was wooden and matched her furniture to perfection. She really was a woman who liked things matching.
I will just say this...as a 24/7 Carer it is so hard to just be left alone to deal with everything...am tired of crying on phone with all the sorting...we should be given more time to sort things!
i kept my promise xxxmumxxx

 

[canary]

Im so sorry for your loss Lemondrop
(((((((((hugs))))))))

 

[Amy in the US]

Lemondrop, I'm so sorry to hear your news. Please accept my condolences. You sound stressed and exhausted, and no wonder. You will be in my thoughts.