I am invisible

[sqeaker]

I just wanted to know if anyone has experienced this, my husband has Altzheimers and it was his speech that went first so he is only able to say odd words, but lately I am finding he looks pleased to see odd people and smiles but once they are gone he closes his eyes and does not inter act with me, I seem to be turning myself inside out to please him but to no avail.

Its so hurtful I know its not him but I am so lonely now as he sleeps a lot but when I feed him he keeps his eyes closed and just opens his mouth for the food,

Has anyone else noticed this whilst looking after someone.

thank you all for your time.
sqeaker

 

[AliceA]

People with dementia do use hosting behaviour with other people, the effort really tires them so they do close down. The secret is, I find, to not take it personally. It is the illness that causes it. Get some support if you can, this is a good place as is the help centre for a chat. Take care

 

[canary]

I was thinking the same as AliceA - that he is making a terrific effort when people visit him and then when they leave he is exhausted and can do nothing. This hosting behaviour is instinctive and my mum did it right up until she passed away.

 

[karaokePete]

I have found that the world of a person with dementia can shrink to the point that their OH becomes something that is just there, supplying the care. I still bear the scar of the first time my wife told me I was her carer, rather than referring to me as her husband.

I have also found that all attention from Doctors, SS etc., is focused on the person with dementia with little attention to the carer other than the occasional 'Don't forget to look after yourself' comment thrown in at the end of a visit. Recently I had to make an unholy racket to get some attention before carer's burnout hit me and I am now awaiting a carers assessment. I have found my GP useful in regards to getting help for both my wife and myself.

Do reach out for help and keep the pressure on as much as possible.

 

[the fairysolaris]

I have found that the world of a person with dementia can shrink to the point that their OH becomes something that is just there, supplying the care. I still bear the scar of the first time my wife told me I was her carer, rather than referring to me as her husband.

I have also found that all attention from Doctors, SS etc., is focused on the person with dementia with little attention to the carer other than the occasional 'Don't forget to look after yourself' comment thrown in at the end of a visit. Recently I had to make an unholy racket to get some attention before carer's burnout hit me and I am now awaiting a carers assessment. I have found my GP useful in regards to getting help for both my wife and myself.

Do reach out for help and keep the pressure on as much as possible.

karaokepete such a familiar song you sing , to hear it sung over and over again cant fail to groove and scar the heart of anyone who cares ( forgive the pun xxx)

love and pain …..flip-sides of the same coin.....
as does if follow that … the clarity of genuine caring one side of the coin relates directly to how deeply carved is the hurting on the flip-side. Tis what it tis no escaping the fact if you care / it hurts

The findings in your second paragraph...... sadly you find correct.

'Don't forget to look after yourself'.....while I hate to knock any kind words said with good intentions xxx…. When we lose hope sometimes good intentions is all we have to cling to..plus lets face it.... we too exhausted to look deeper into the meaning of the phase. 'Don't forget to look after yourself'....relevant I guess if you're a 17 year old in their first term at university trying to sustain all night partying with a diet consisting of nothing but alcohol and kebabs. I didn't accidentally “FORGET “ to look after myself! …....nor does it figure high on my to-do list !.............which bit don't they get ?........struggling ,caring doing your best to look after someone more vulnerable than yourself …. by default has your well-being prioritized out of the equation. 'Don't forget to look after yourself '…..boiled down….. ' you look like ****. and you're on your own with that'......still I smile “ that's sweet of you to say ...yes I'll try … thank you have a lovely bank holiday” The worst of it is …........i simply cant see the SENSE in it.... if I could logic the common or commercial sense in it all id shut up and give it a rest ….honest I would! Surely ....Put your resources into to separate areas … .a... looking after the best interests of vulnerable people who no one cares for. .b.... real help , proper support , funding and god help me for saying it …. Pride and Respect given to those who love and care for vulnerable people …... make them your priority and they 'll look after they vulnerable for you (efficiently , effectively profit free wagelessly and with LOVE. if you waste resources bypassing and battling against the carers of vulnerable people then what ya gonna get ? …..broken carers ..well done “the powers that be....you've just doubled your quota of vulnerable people now needing care…..............i just cant see how that's in the “best interest” …........of.....of of.........humanity? Im so sorry about rant …. 6am... lunchtime already? ….and I have no idea why the man from the Pru keeps stealing the toaster? Love the fairysolaris

 

[Soroptimist]

karaokepete such a familiar song you sing , to hear it sung over and over again cant fail to groove and scar the heart of anyone who cares ( forgive the pun xxx)

love and pain …..flip-sides of the same coin.....
as does if follow that … the clarity of genuine caring one side of the coin relates directly to how deeply carved is the hurting on the flip-side. Tis what it tis no escaping the fact if you care / it hurts

The findings in your second paragraph...... sadly you find correct.

'Don't forget to look after yourself'.....while I hate to knock any kind words said with good intentions xxx…. When we lose hope sometimes good intentions is all we have to cling to..plus lets face it.... we too exhausted to look deeper into the meaning of the phase. 'Don't forget to look after yourself'....relevant I guess if you're a 17 year old in their first term at university trying to sustain all night partying with a diet consisting of nothing but alcohol and kebabs. I didn't accidentally “FORGET “ to look after myself! …....nor does it figure high on my to-do list !.............which bit don't they get ?........struggling ,caring doing your best to look after someone more vulnerable than yourself …. by default has your well-being prioritized out of the equation. 'Don't forget to look after yourself '…..boiled down….. ' you look like ****.. and you're on your own with that'......still I smile “ that's sweet of you to say ...yes I'll try … thank you have a lovely bank holiday” The worst of it is …........i simply cant see the SENSE in it.... if I could logic the common or commercial sense in it all id shut up and give it a rest ….honest I would! Surely ....Put your resources into to separate areas … .a... looking after the best interests of vulnerable people who no one cares for. .b.... real help , proper support , funding and god help me for saying it …. Pride and Respect given to those who love and care for vulnerable people …... make them your priority and they 'll look after they vulnerable for you (efficiently , effectively profit free wagelessly and with LOVE. if you waste resources bypassing and battling against the carers of vulnerable people then what ya gonna get ? …..broken carers ..well done “the powers that be....you've just doubled your quota of vulnerable people now needing care…..............i just cant see how that's in the “best interest” …........of.....of of.........humanity? Im so sorry about rant …. 6am... lunchtime already? ….and I have no idea why the man from the Pru keeps stealing the toaster? Love the fairysolaris

'Don't forget to look after yourself '…..boiled down….. ' you look like ****....and you're on your own with that'. - That really make me laugh, thank you!! xxx

 

[Helly68]

I so empathize with this! Look after yourself everyone says. I don't even know what that means any more....

 

[the fairysolaris]

'Don't forget to look after yourself '…..boiled down….. ' you look like ****....and you're on your own with that'. - That really make me laugh, thank you!! xxx

Ha ha ha ….. pleased it got appreciated

I wish it weren't so true really I do !!..... and I know it said out of good intentions.....but like most people caring “good intentions”. A luxury my energy cant afford !...... id settle instead for someone saying “you look like ****… anything I can do to help ?.... but nooooo its the last thing they say as turn and walk away .( naughty well intentioned polite little muffins bless their hearts x)



I sound bitter I guess but I not , not at all …... just exhausted!

Thank you for “getting it “ chuffed it made you laugh.

Hugs

the fairysolaris

 

[the fairysolaris]

'Don't forget to look after yourself '…..boiled down….. ' you look like ****....and you're on your own with that'. - That really make me laugh, thank you!! xxx

I so empathize with this! Look after yourself everyone says. I don't even know what that means any more....

 

[the fairysolaris]

helly68
a sunbeam to warm you ,
a moonbeam to charm you,
an all sheltering angel , to watch over
so nothing may permanently scar you.

………."don't know what that means anymore ?"
i'll tell you what that means...… that you probably look like xxxx......noticed by those with kind words and capacity to comment...…..who are either unable or unwilling to look you in the eye asking HOW CAN I HELP YOU?...………. then refusing to leave till (however small or insignificant it may seem) ……. you gather trust enough in them to delegate them a task that helps YOU (start with something simple like " chemist …. go chemist bring me nice thing... anything...make me feel little better about me...…..no more that £3 pounds of your own pennies not cost more that that ever …….please don't ask me what !…. if you have to know then id rather you not ………...if they accept its ok not to go ….. apologise for your funny five mins ...say thanks let them know you'll be fine...…………………...BUT if they go and come back with little something for YOU... not needing you waste the little energy you have and the eternally thanking yous...….on the crazy off chance they return and ask you again......then maybe trust them tiny task to help you with something you need …………………………………...if however they return from the chemist that first time with either utillitarian talc or PADS !!!! …….well that down to you,,,,( personally I liable to kill the xxxxxxxx ) …...or politely say ta muchly and ignore any future " don't forget to look after your self's " they offer.

Anywaysup ………….what it all means is that I can see how amazing beautiful you is looking to me !! ………..and that over rules all the " don't forget to look after yours-selfers"
over there ?
hugs
the fairysolaris