ups and downs and relatives

Annoula

Registered User
Dec 4, 2008
155
0
Greece
i am having some bad days then i get desperate and something good happens and i take a break from feeling miserable, but then again misery comes back. i suppose it's gonna be like that for as long as it takes...

but i am also starting to withdraw from relatives. i rarely visit my aunt whom we used to visit 1-2 times a week. i haven't been there maybe for more than a month. i feel bad about it but i just don't wanna go there anymore. i just don't wanna visit anyone. i have asked this aunt to look after my mother for a week or more so that i could go away but she said she could just do it for a weekend. i know she has her own problems and things to take care but i felt let down.

i have asked my uncle to come and visit my mother in regular intervals (he visits anyway) but he said when i need something to let him know. i "need" every day... if he could come for 2 afternoons a week, even 1 i could just go out and feel free good because my mother would be with someone.
then this same uncle although i have nagged and complained about all the situation to him, said once that he would prefer to lose his memory than be in pain.
darn... he said that in my home! i just wanna cry...

he lost his son and his daughter in law so "losing" his memory would be a way to forget all his pain... but what he said just made me understand he knows nothing of all the pain the carer and patient suffer. it's not that the patient is happy not remembering anything... why can't they get that........

i want all the relatives to know that they have left me, they have dumped me ... they have no idea what i get through every day...
i haven't told them that my mother got lost last week, or that she fell down or that she hit her head on a drawer.

they all have their difficulties but they are not alone. i am alone with my mother. and i feel very very alone...

i envy my friend that she took care of her sister when she was ill. she would stay at her home together with her mother to look after her.
i envy another friend of mine who had her MIL in the hospital for surgery. she would tell me in a relaxed manner that the family was taking shifts in the hospital so that the MIL will not be left alone...
i dread the mere thought that my mother may need to be hospitalized or get sick in any other way.

i am in a down bla bla mood...
:(

thanx for listening.
 

Snip

Registered User
Mar 16, 2009
127
0
Oh Annoula...that does sound really awful....and I think I would feel the same way too. We all hope that our families will support us but it often doesn't seem to work out - I really do think people don't understand the misery of dementia sufferers and their families. I guess I didn't myself, in the past :rolleyes:

Do you have any carer groups locally? Or even someone from a voluntary group who might help out to give you an afternoon off??

Best wishes...and at least on TP you know we know what you mean!


Snip x :)
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Do you have any carer groups locally? Or even someone from a voluntary group who might help out to give you an afternoon off??

I was wonder that also . Do you have a social worker that could get a sitter in sit with your mother. So you could indulge in something you may like to do outside of your home during the day ?

They could also organize respite care to give your a week of . would you contemplate in asking for that ?

It is a lonely place to be in while caring having no support from family. I have my adult children in out around me. help out sometime so I can get an evening out .

My mother go to day centre 5 afternoons a week. So I can get some " ME " time .
 

Annoula

Registered User
Dec 4, 2008
155
0
Greece
Best wishes...and at least on TP you know we know what you mean!


Snip x :)

i liked that one...

i can still leave my mother alone and go out but she herself feels so much alone. she is like a child when my uncle comes for a visit, so happy for the company, smiling and talking.
i feel bad because i can't chat with her like we used to. when i am in good moods i may start talking and explaining things but in the end i may feel tired with all the repetion and explanations..

i am in a carers group but we don't have home support yet. but i think we will in the future, because i suggested that in our last meeting.
another solution is for me to ask a lady to come over for a couple of hours, but this will be with payment.
i have to do it but i am still reluctant...
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Hello Anna

It can be very isolating and lonely caring for someone with a dementia:( Not once have any of our family said to me "You have a break Helen we will have dad for an hour, half a day, a whole day, a weekend or a week". The first SW that came here asked about friends and relatives:(:eek: I said I haven't time to invest in friends as mine have disappeared and relatives all have their own problems. I was embarrassed.

My assistance comes from the social care system and in this I have been very fortunate. I have no idea what is available in Greece?! Do you have anything equivalent to Crossroads which is a non profit making organisation which provides a sitting service for carers. I am sure they do more and if you are interested I could send TP that not everyone receives the social care that they need.

Anna I am sorry that you are hurting so much but I do send you a big (((HUG))).

Love
 

Annoula

Registered User
Dec 4, 2008
155
0
Greece
Margarita... this is Greece... we don't have social workers and people caring for us the carers... caring for a dementia patient in Greece is considered very expensive because you have to pay for almost everything. a usual practice for serious conditions is to have a lady full time (living in the house with the patient). this means money.
if you want to place the patient in a nursing home (they are not actually nursing homes) you also have to pay and usually a patient's pension is not enough to pay for this, so more money there.

there was a good program with a day center but the goverment refused to continue paying for it so employes left. there is not an organised way of care for dementia patients. carer groups are trying to help and they are doing a good job, but it still is not enough.

i am lucky to have a friend of ours coming over and staying for a week or so. she had her father with alzheimer's and she knows how things are. i take a good break when she comes. but now i am expecting her in may so i have some time ahead...
 

Annoula

Registered User
Dec 4, 2008
155
0
Greece
dear Helen thanx for the hug... it made me cry and smile..

i don't know what Crossroads are.
Athens' carers association liked the idea i suggested of creating a volunteer group who would receive some training by professionals and then would visit patients.
they had something similar but only for serious conditions where professionals would train carers at home in how to take care of patients. but i think it stopped because of non govermental funding.

i hope they do something about it and i am myself willing to help because cases like my mother really need company. it may take a while to get started but it will help nevertheless.

darn.. the planet is overpopulated and we are so alone..
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
Margarita... this is Greece.


Please except my apologies as I never look at what county you are living it, but thank you for explain how it is with Demetria support in your county.

i am lucky to have a friend of ours coming over and staying for a week or so. she had her father with alzheimer's and she knows how things are. i take a good break when she comes. but now i am expecting her in may so i have some time ahead.

but now i am expecting her in may so i have some time ahead

Yes it is a long while to wait to get a break, I do feel for you .
 

susiesue

Registered User
Mar 15, 2007
2,607
0
Herts
Hello Anna

I am so sorry you are feeling so desperately miserable - I do understand exactly what you are going through. It is a very lonely place being a carer and I really do believe that this illness is often worse for the carer than it is for the patient.

Not once have any of our family said to me "You have a break Helen we will have dad for an hour, half a day, a whole day, a weekend or a week". The first SW that came here asked about friends and relatives:(:eek: I said I haven't time to invest in friends as mine have disappeared and relatives all have their own problems. I was embarrassed.

Helen, I could have written that! Friends (the ones that are left!) frequently say 'you know where I am if you need any help' - and that's it. As for family - don't even start me off on that one!!!!

It is so lonely and I can no longer have any conversation with my husband. I still try hard to talk to him but he just does not understand most of the things I say to him and vice versa. I too can feel myself becoming very isolated - so I do sympathise.

You are not alone and I am thinking of you.
Love