New to the forum

[BMinSyorks]

Hi,

I’m new to the forum as have just registered. I have found reading some of the posts really helpful and comforting to know I am not alone in how I am feeling as Dads carer. It’s been a really stressful time and am feeling every emotion going whilst trying to juggle a stressful job in mental health and my own illnesses. I do feel really burnt out but Dad is refusing to go in a care home and now his carers are saying they can’t meet his needs so it is falling to me and my Brother. I am finding myself feeling so angry all the time and don’t really like the bitter person I have become. I find it really hard to be around people in general at the moment as feel so isolated and that no one really cares they just carry on. I’m in my 30s, haven’t even had a chance to start a family of my own because of fertility issues/illness and didn’t sign up for this. I don’t feel like I have any time for myself anymore and fear it’s going to get worse before it gets better and don’t know some days if I have the strength to deal with it. I’m hoping speaking out on the forum may help as don’t feel I can speak out in everyday life without feeling judged.

 

[special 1]

Hi,

I’m new to the forum as have just registered. I have found reading some of the posts really helpful and comforting to know I am not alone in how I am feeling as Dads carer. It’s been a really stressful time and am feeling every emotion going whilst trying to juggle a stressful job in mental health and my own illnesses. I do feel really burnt out but Dad is refusing to go in a care home and now his carers are saying they can’t meet his needs so it is falling to me and my Brother. I am finding myself feeling so angry all the time and don’t really like the bitter person I have become. I find it really hard to be around people in general at the moment as feel so isolated and that no one really cares they just carry on. I’m in my 30s, haven’t even had a chance to start a family of my own because of fertility issues/illness and didn’t sign up for this. I don’t feel like I have any time for myself anymore and fear it’s going to get worse before it gets better and don’t know some days if I have the strength to deal with it. I’m hoping speaking out on the forum may help as don’t feel I can speak out in everyday life without feeling judged.

Hi there. Never ever fell that you are being judged. You are doing the best that you can and are doing a good job at taking care of your Dad in the best way that you can. I know that you are only 30 years young and you will feel that your life is getting taken away. Just try and take a bit time for yourself if you can. It is not easy to put someone into a home, as it costs so much, also that person is taken out of their place of comfort for them. My Husband is 79 & I am 72, there is not a day goes by that I am not in tears as it just gets too much also. They always say it is the dementia, but what about the carers. There are days that I just want to end it myself as I think that is the only way to get away from it. Then I think how selfish. I feel for you as you are sooo young. Do take care. 🦋

 

[2ndAlto]

Hello @BMin, welcome to the forum. I am so sorry to hear about your Dad but the time might be coming when he will have to go into a care home - if the carers can't cope and you are at the end of your tether - it will be the only way to keep him - and you - safe. It isn't cruel - he will be taken care of and you can start to live your life. You might need to get in touch with Social Security and tell them you just cannot cope. I am not in the UK so apart from this forum I'm not sure how the Care system works but I'm sure someone else on this forum will be along soon to give you good advice. Please don't feel guilty, there simply comes a time when your Dad needs more than you can possibly give.

 

[Violet Jane]

No one with any first hand experience of caring for someone with dementia will judge you. It’s entirely understandable that you are feeling as you do, particularly as the majority of your peers don’t have this caring burden and are free to live the lives they want.

I’m afraid that whilst you and your brother prop up your father Social Services will do nothing. You need to tell Social Services that you are stepping back and that once the carers leave (which it sounds they will do shortly) he will have no support. Due to ideology and lack of money Social Services keep people at home until things are grossly unsatisfactory for the PWD and / or the family carer(s) has/have reached carer breakdown. When Social Services want someone to go into a home they will find a way and will override the PWD’s wishes to stay at home (almost every PWD says s/he wants to stay at home).

It will be hard to step back but if you don’t you and your brother will fill in all the gaps which are left when the carers depart AND you will be doing all the other things that they couldn’t do / weren’t contracted to do. As your father’s dementia progresses you will be running or dealing with all aspects of his life: home, finances, life and health admin, food and personal care. That’s too much for you and your brother. Do NOT think of giving up your jobs or cutting back your hours. That could damage your careers and seriously affect your future finances.

 

[SAP]

@BMinSyorks no one would judge you on here, many of us have got to breaking point and needed our loved one to go in to care for the 24/7 support they need. It can be a battle with social services so please take the advice from @Violet Jane to push their hand.
My mum is in a lovely home now , she is well cared for and I visit her regularly as her daughter not the worn out wreck I had become.

 

[try again]

Once a person is not safe in their home they should be moved into a care home. The problem is deciding when this time has come. There are obvious things like wandering outside at night, leaving door open etc.
Some people have the temperament and help to keep the PWD at home but they are few and far between and I do sometimes think they do not manage as well as they think they do.

No one would really want a loved one to stop living to look after them.
Dementia is a progressive illness and any improvements along the way are short lived.

Please don't sacrifice your own life. At some point the PWD will be unhappy wherever they are.