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Guilty as Charged...

irina.b

New member
Jun 26, 2022
2
0
Wow! I just joined and read almost all posts in hope to find and answer...Of course, found many and none...
I'll start with that I don't live in th UK and in my country care for people with dementia orAlzheimer are non-existent. There are maybe homes for such people but are are extremely costly and as far as I have heard - care is far from real care. People are just let to slowly die, losing their dignity and human face.
anyway, my mom was diagnosed with dementia 5 years ago and since then has deteriorized fast, with all the package of delusions, paranoia, aggrssion, accusations and the likes. I care for her myself, losing my business, my several jobs, friends, any social or other life. I have been strong enough to cope and most of the time it was bad for me, but me only.
Since recently, my mom's anxiety levels rose, for no reasons as anything else, which now make going out for groceries and walking the dog a nightmare, since she starts shouting form the windows to passers-by that she's been held prisoner, left alone and so on. The people in our building are starting to complain, I give her medications prescribed by the GP for dementia anxiety and stuff, but things do not change. it happens when I am home, too, but at least I am home and can address the issue. I am home 24/7 with exceptions of walking the dog and grocery shopping. i have tried taking my mom with me, but she refuses most of the time and even when I've managed to take her out, after that she seems more disoriented and with more paranoias, as anything new that she sees or hears creates new fears and concerns.
Most of the days she begs me to give her something so she can die. Guilty as charged, I have often thought that would be better for all. But then, I feel guilty of these feeling as well as I feel guilty that I cannot really help much.
I am getting panicking myself lately, because besides the everyday pre-heart-attack conditions, I am strongly worried how my life will continue with or without her. I am afraid I may go before her and equally I am afraid that if she lives long (the life-expectancy calculator said she will live 91 years, and she is still 82 now), I will be over 60...and then what?
Guilty as charged, I feel and think these things and then feel even more terrible and bad person for thinking them...
Is this dementia a diagnose for the care-givers, too?
Is it the end of the care-givers' life?
In my country, people are ashamed to talk about that.
I was thinking of creating a support fund or society that can discuss thigs freely and give support to both patients and care-givers. But I do not know how to do it
Please, share anything that you think or know. I will be grateful for any advice on any topic...
Thanks ofr reading!
 

update2020

Registered User
Jan 2, 2020
275
0
Wow! I just joined and read almost all posts in hope to find and answer...Of course, found many and none...
I'll start with that I don't live in th UK and in my country care for people with dementia orAlzheimer are non-existent. There are maybe homes for such people but are are extremely costly and as far as I have heard - care is far from real care. People are just let to slowly die, losing their dignity and human face.
anyway, my mom was diagnosed with dementia 5 years ago and since then has deteriorized fast, with all the package of delusions, paranoia, aggrssion, accusations and the likes. I care for her myself, losing my business, my several jobs, friends, any social or other life. I have been strong enough to cope and most of the time it was bad for me, but me only.
Since recently, my mom's anxiety levels rose, for no reasons as anything else, which now make going out for groceries and walking the dog a nightmare, since she starts shouting form the windows to passers-by that she's been held prisoner, left alone and so on. The people in our building are starting to complain, I give her medications prescribed by the GP for dementia anxiety and stuff, but things do not change. it happens when I am home, too, but at least I am home and can address the issue. I am home 24/7 with exceptions of walking the dog and grocery shopping. i have tried taking my mom with me, but she refuses most of the time and even when I've managed to take her out, after that she seems more disoriented and with more paranoias, as anything new that she sees or hears creates new fears and concerns.
Most of the days she begs me to give her something so she can die. Guilty as charged, I have often thought that would be better for all. But then, I feel guilty of these feeling as well as I feel guilty that I cannot really help much.
I am getting panicking myself lately, because besides the everyday pre-heart-attack conditions, I am strongly worried how my life will continue with or without her. I am afraid I may go before her and equally I am afraid that if she lives long (the life-expectancy calculator said she will live 91 years, and she is still 82 now), I will be over 60...and then what?
Guilty as charged, I feel and think these things and then feel even more terrible and bad person for thinking them...
Is this dementia a diagnose for the care-givers, too?
Is it the end of the care-givers' life?
In my country, people are ashamed to talk about that.
I was thinking of creating a support fund or society that can discuss thigs freely and give support to both patients and care-givers. But I do not know how to do it
Please, share anything that you think or know. I will be grateful for any advice on any topic...
Thanks ofr reading!
What a stressful situation. So much sympathy. I think that starting a support group would be brilliant as conditions vary so much from one country to another. Where are you?
 

Violet Jane

Registered User
Aug 23, 2021
892
0
@irina.b, dementia can bring out some very dark feelings in the carer as caring for someone with dementia for years is extremely stressful and takes a huge toll. You have said that organised social care is very limited in your country but would it be possible for you to pay someone to sit with your mother a couple of times a week so that you can go out?

Care homes in the UK used to have a bad reputation, with residents being over-sedated and under-stimulated, but things have changed a lot in the last few years and relatives are often pleasantly surprised when they visit, either when they are looking for a home or when they are visiting their loved one. Is it possible that homes in your country have improved as well, or at least some of them have? If you haven't looked round any homes it might be worthwhile doing so and seeing for yourself what they are like.

I think that setting up a support group, would be a great idea.
 

irina.b

New member
Jun 26, 2022
2
0
What a stressful situation. So much sympathy. I think that starting a support group would be brilliant as conditions vary so much from one country to another. Where are you?
Thanks for answering! I am in Bulgaria and special homes are too expensive. I took my mom to the psychiatrist not long ago to only be told they do not deal with dementia or Alzheimer since they are not psychiatric deseases. Interestingly, I have a few friends that have been through this with their moms and just like me they had to care for them until the end. And just like me, it wasn't the care and dealing with all the things that is the most terrible, it is the slowly ruin of our lives, our psyche, self-respect etc. I know that if I could give her in a home, that would be a relief and actually I do try to settle her somewhere, but searching for an adequate place takes a long time. Hopefully, I will be able to.
And yes, reading through all this wonderful forum that I came upon in my desperation, I definitely will set up a support group on a social medial where I hope to meet people in the same situation and discuss issues. This is an awful condition and although syptoms are similar, the carers seem to meet a bit different challenges depending on where they live.
Thank you!
 

update2020

Registered User
Jan 2, 2020
275
0
Thanks for answering! I am in Bulgaria and special homes are too expensive. I took my mom to the psychiatrist not long ago to only be told they do not deal with dementia or Alzheimer since they are not psychiatric deseases. Interestingly, I have a few friends that have been through this with their moms and just like me they had to care for them until the end. And just like me, it wasn't the care and dealing with all the things that is the most terrible, it is the slowly ruin of our lives, our psyche, self-respect etc. I know that if I could give her in a home, that would be a relief and actually I do try to settle her somewhere, but searching for an adequate place takes a long time. Hopefully, I will be able to.
And yes, reading through all this wonderful forum that I came upon in my desperation, I definitely will set up a support group on a social medial where I hope to meet people in the same situation and discuss issues. This is an awful condition and although syptoms are similar, the carers seem to meet a bit different challenges depending on where they live.
Thank you!
Using Social Media is a great idea. You are also lucky to be in the EU and I wonder if you might find something useful here: https://www.alzheimer-europe.org/policy/eu-action

Really hope you find a good solution for you both xx