Worried And Alone

[Andyp101]

Hi All,

I am new to the board. My Mum is 82 and has dementia. She is in its latter stages. I have been left alone to care for her after family difficulties. They are content to shout from the sidelines but offer little help. Money is no object but time and caring is. So I came to take care of Mum after she had burnt herself. I have been here nearly two years. Through a combination of unwanted family pressure and seeing my Mum deteriorate I guess, I tried to kill myself in April '17. It was of no hindered to my continued care and little consequence to Social Services. I was recommended to seek respite.

It is easy to say and less easy to do. I do not want to condemn my Mum to a care home, even for as little as two weeks. I do not socialize, do not stop caring for Mum. I do not have to tell anybody here about how hard it is. I am taking medication for stress, depression and anxiety but again, as long as I take the medication, the authorities do not worry.

I worry. I worry I am not doing enough for my Mum. I worry that she is unhappy or upset. I worry that I am not good enough for her.

She knows my name but that is only because I am here every day. She does not really know who I am or what I am to her.

When do I consider full time care (in a home)? Am I wrong to think this? Can they do more for her than I can? Can she been happy there? How do I do it?

Thanks for listening.

 

[Fullticket]

Hi Andyp101
You sound like you have reached the end of your tether and are seeking more than reassurance that you are doing enough for your mum. You sound to me as if you have done more than most could and you need to give yourself a bit of a rest (easy to say I know). If a care home is not the route you want to take, can you get someone in to help you? Can she go out for day care in a home, or are there any clubs like Memory Cafe or Singing for the Brain that she would enjoy? Even if she is no longer able to communicate very well, she may enjoy the company of other people and join in the singing. I am a great believer in leaving it to the professionals and I now have people in to get mum up in the mornings (saves me being shouted at and her clinging to the mattress) and they shower her twice a week and supervise washing/teeth cleaning, etc. The day care at the local home provides stimulus (knitting if your mum is still able, drawing, crafts, singing, having her nails painted, and lots of cuddles, tea and smiles).
I know I almost gave up some time ago before I let go of the reins and let others do for her what I could not provide.
Now I have a bit of time for me and feel a lot less stressed about everything - despite having a totally authoritarian family who provide instructions but nothing in the way of any emotional or practical support.
Please, please seek some help for yourself. You are at crisis point and need to tell social services that you need help - initially for your mother if that is how you want to tackle it but please explain what has happened to you and how you feel.
Someone will be along in a bit I suspect who may know more about the practical side of getting help for your mum and yourself. Meantime, all I can do is offer sympathy, empathy and a large hug. Please keep posting and letting us know how you are getting on.

 

[Beate]

Andy, I think you would benefit from counselling. It might help you to see that you matter too and that you are entitled to a life outside caring. It shouldn't consume you like it does at the moment. No man is an island, and you shouldn't dismiss support or a care home out of hand. There are day centres, carers, befrienders.... And if you still feel overwhelmed then please know that you will not "condemn" your Mum to a care home. You will do what needs to be done, and often, when a carer is breaking down, it's in their best interest to involve a care home. What can they do what you can't? Well, for a start there is more of them so they can be around your mother round the clock. They can provide activities and social interaction - not just with themselves but with other residents as well. Being at home with no one else around is a lonely existence - not just for you but for her as well.

People often ask: When is it time for a care home? I usually reply: When you're asking the question.

If money is no object and social services are of little help, research and contact care homes in your area yourself.

 

[Amy in the US]

@Andyp101, hello and welcome to Talking Point. I'm sorry you had to find your way here.

I am even more sorry to hear about your incredibly painful and difficult situation, and think you are smart and brave to reach out here for help.

You are correct, you don't have to tell anybody here how difficult being a carer is for someone with dementia, we all know that it is extremely difficult.

If I could very gently suggest that there is no shame or blame in getting help, because this is not a job that only one person can do, 24/7, by themselves, with no support, forever, without suffering repercussions? And it sounds as though you've suffered more than enough?

From an emotional standpoint we all understand that you do not want to abandon your mum. I hear you, I really do.

But from a logical standpoint, you are asking of yourself an impossible task and it is okay to get a helping hand now and then.

If you will indulge me, please allow me to be ruthlessly logical and give you a "what if" scenario. What if: you were the new parent of a child. Would you expect yourself to give that child all the care it needed, 24/7, 365 days of the year, for its entire childhood, 16 years, with no other person to assist? You would never leave its side? You would never, for example, send it to a friend's house to play, or on a school outing, or hire a sitter for an evening? I am sure you see where I am going with this.

I am sorry if you are too upset right this moment to think logically, and I do understand feeling overwhelmed by emotion. I am sure many of us do. Nothing about caring for a person with dementia is ever easy.

Perhaps you could allow yourself to think about the possibility of getting some help, some of the time. Even if your mother were in full time care, and I am not saying she should be or that is what you should do, but just if, that does not mean you stop caring for her. Getting some help around the house, or help with personal care, or some daycare hours each week, or respite, does not make you a bad person, a bad carer, or a failure. We are only human and we have our limits.

If you have carers' breakdown, or a health emergency, or something worse, that does not help you or your mother.

You say in your post that you worry, and we can hear that worry, loud and clear. It is enough worry, that I think many of us, feel worried also--not just for your mother, but for you.

I think you urgently need to reach out for some help, but I am not sure where to direct you. The Samaritans have a helpline that they answer 24/7, if you ever need to talk to somebody for any reason. Age UK and the Alzheimer's Society also have helplines. I don't know if you have a relationship with your LA and/or Social Services in your area (from your post, I would guess an unsatisfactory one), but those might be places to contact, as would your mother's Community Mental Health Team or Nurse, her GP, your GP, and your therapist/counselor/psychiatrist, if you have one. There are also the Admiral Nurses. I am hoping someone in the UK will have a better idea than I do, of a place to start.

Please believe me when I say I am very sorry and concerned to hear about your situation, you are obviously overwhelmed, and no wonder. Please do get some help, for your sake and for your mother's sake, and please do feel free to continue to post here on TP.

 

[gotanybiscuits?]

Welcome aboard Andy

 

[karaokePete]

People can be happy in a CH, although they can take time to settle. What help will you be to yourself or your mum if you have a total breakdown?
Don’t be afraid to give respite care a go.
Keep posting on here if you just need to talk or put ideas out there for comment. This forum is a friendly and informative place.

 

[love.dad.but..]

So sorry to read your obvious distress and struggles. I don't believe any of us who have had to make the very hard time for a care decision have done so willingly but it is often in the best interests of the pwd and health of the carer. Was for me. You have more than reached that point and have already done so much to keep your mum safe and looked after. Time to not condemn your mum to a care home rather time to realise that a care home can actually provide more expertise than one person no matter how willing can give. If self funding...no hoops to jump through..start looking at some now. A care home can be a good environment for someone declining with dementia. From the start I said my dad would never go into a Care home but things change beyond our control and the challenges become extreme and you have to be brave and make the kind decision for your pwd and more importantly yourself and your health. Please seek help and professionals to help you now

 

[mab]

Andy, you tried to kill yourself earlier this year. Can you be more desperate for help than that?

Would allowing helpers care for your mother, either at home or in a care home, be worse than succeeding in suicide and leaving her with no-one to care? Sometimes the greatest care and love we can give is to step back and let the professionals take over. You too have a right to a life.

Dementia sucks in everyone and anyone without mercy. And it never gets better! It's a constant decline. If you can't cope now, how will you cope later? Only by taking care of yourself can you hope to care for your mother, wherever she is. You need respite and as Beate says you would no doubt benefit enormously from counselling. You won't be loving your mother any less by letting go, indeed, you would be loving her wholeheartedly without the desperation of a carer's breakdown.

Just as airlines tell us to put the oxygen mask on ourself before another person, you too need to put yourself first if you're going to be able to take care of another.

And keep talking on here.

 

[Andyp101]

I would like to thank all of you for welcoming me and taking the time to read and respond to my message. It is so appreciated, I cannot begin to tell you by how much. I have taken all that is said to heart and am thinking about the future a little more clearly. Thank you again and I promise t keep in touch.

It is coming up to a tough time (or should that be 'tougher'?) but I would like to wish you all the best for the holidays.

 

[Shedrech]

hello @Andyp101
good to read that members responses have helped
thanks for your holiday good wishes - the same for you

and remember - TP is here all day every day, including holidays, so post here whenever you want to chat about anything

 

[emmags]

Andy I so wish I could give you a big hug. You are a carer in many ways but also it feels that is a trait of yours and you put others first. I was like that, then due to having 2 alcoholics in my life I found help from a support group and learnt that I need to look after myself, no one else will, it is not easy and I have to remind myself a lot, even the other day I had someone say let us look after you.

I too have depression and suffer with stress.

I think deep down you know you need to look at options for help. I am just going through it with my dad but unfortunately the only option for him is a home as his dementia has been covered up by drinking but he has been in hospital for 4 weeks and you can clearly see the dementia in him.

I sat there in the best of intentions meeting and said I don't want it seeming like we are passing him over to the system but I have to remind myself it is right for him, hurts me like hell but it is right for him.

Please please sort out some help and allow you some you time xx