Utter lonliness

[smartieplum]

Hi. I care for mum with dementia and dad with macular degeneration. I do all for my mum. Dad is unable and a bit unwilling to take any responsibility. I live with them but other siblings are useless. "If you need anything...." Yeah, sure. I have no social life and friends are long gone. The responsibility is just so overwhelming. Home help are coming out tomorrow to assess for lunchtime assistance as i work. I just know she won't go for it. She also has her first day at day club Tuesday and hope to god she takes to it. Her physical health is getting worse. I'm now off work with stress and on antidepressants. Is there any light at the tunnel? The sheer lonliness of it all is awful. I read this post back and think " is this what I've become"

 

[notsogooddtr]

It is awful,caring takes over your life and becomes overwhelming.Do remember that you are also important,just as important as your parents.And at the end of the day they are not your responsibility.

 

[smartieplum]

It is awful,caring takes over your life and becomes overwhelming.Do remember that you are also important,just as important as your parents.And at the end of the day they are not your responsibility.

So who is responsible?

 

[Tara62]

So who is responsible?

Hello, Smartie. In the end, the State is responsible, because in Law, no one has the legal responsibility to care for another adult. No one can force you to do so. You can walk away if you wish.

You are having a really tough time, and you need to seek out all the help you can find. I know exactly what you mean about the responsibility being overwhelming. Feels like being constantly crushed under a heavy weight, doesn't it?

 

[Aussiesheila]

Hi. I care for mum with dementia and dad with macular degeneration. I do all for my mum. Dad is unable and a bit unwilling to take any responsibility. I live with them but other siblings are useless. "If you need anything...." Yeah, sure. I have no social life and friends are long gone. The responsibility is just so overwhelming. Home help are coming out tomorrow to assess for lunchtime assistance as i work. I just know she won't go for it. She also has her first day at day club Tuesday and hope to god she takes to it. Her physical health is getting worse. I'm now off work with stress and on antidepressants. Is there any light at the tunnel? The sheer lonliness of it all is awful. I read this post back and think " is this what I've become"

I don't have any answer but your post was so poignant I wanted to let you know I hear you and I sincerely hope someone comes along with advice that helps . Good luck

 

[marionq]

Whether she says she likes day club or not insist that she goes for the good of her health and for " stimulation". Once you get her established on a Tuesday look for an extra day. You will find it tires her out and makes her easier to manage.

With your siblings you need to tell them specifically what you want them to do eg come on a Saturday afternoon and let you out for a few hours, take them both out for Sunday lunch etc. If you don't ask you won't get.

 

[Lavender45]

Hi Smartieplum

I have no words of wisdom, l truly wish I did. I admire you caring for both your parents. I only have mum to look after, dad passed away many years ago, I could not cope with caring for two, I can barely cope with one. You are clearly a wonderful daughter.

I can fully understand how it feels to have no life left. I have precious few hours to myself (around 5 hours a week based on mum going to a pensioners group and church). If she refuses to go to either one, well that's just less me time.

I have to be honest I gave up work to care for my mum as I wasn't sure she was safe alone. Her judgement is definitely ski wiff. I saw caring through rose-tinted spectacles. They came off fast. I seem to be in tears an awful lot, I know my GP would suggest an antidepressant, but I don't really want to head down that route. I'm bitter that caring could result in me taking medication long term. Its just wrong.

I hope your mum will enjoy the Tuesday club and give you a breather. Fingers crossed. Another post has said whether she wants to go or not you should insist. Whilst I agree with them that is something I'm struggling with. I really want mum to go to a day centre even just for one day, but she is very resistant, she just wants to be at home. I find a battle going on between what mum needs and what I need and mum is winning. Its hard!

You mentioned that your siblings don't help. I only have one sister and whilst she visits regularly, she takes no part in caring and has made it pretty plain (though nicely) that with her own teenage family she won't be stepping in. In the 12 months since I left work to look after mum she has not once offered to take mum out to give me even an hour or two. I know full well there is no point in asking for her help, it would just damage our wafer thin relationship when she refused. To be honest I can't even off load to her, she doesn't want to hear it. Poor old TP gets the brunt of all my woes! You also mentioned friends being long gone. I have some good friends and I see them when I can, but other friends, people I was actually closest to melted away PDQ.

I'm sorry my post is full of my own woes, I just wanted you to know that there are probably quite a few of us in a very similar situation. You are definitely not alone. If you ever need an ear to listen I'm always around and loads of others are too.

Luv Lavender x

 

[Rageddy Anne]

Couldn't read and run....you are no longer alone dear. People are wonderfully supportive on here. Sending a hug.....

 

[Shedrech]

Morning smartieplum
my hat goes off to you - you have been working and caring for your parents - what a super daughter you are
something, though, was going to give, wasn't it
I'm sorry to read that you are off work - so at first I thought you had 'broken'
then I realised you have organised some home help and a day club for your mum - good for you - you're clearly together enough to know you need other input and have gone out and found some - I really hope it helps
I'm with your other responders - you have to insist that your mum goes to the club (and then ask for more day care) and that the home help keeps coming (then up it and get help at other times - you don't mention whether your mum may need personal care) - yep, I know, easier written than done - use every reason/excuse under the sun - eg it's for you, so you can go back to work, everyone you know of a certain age has help, it's free (fib) don't look a gift horse etc
I assume - because of the care organised - that you have had a needs assessment done for your mum (and dad?) and that you have Attendance Allowance (for both?) - I wonder if you have had a carer's assessment yourself - please do: I appreciate that as you are employed you probably won't qualify for carer's allowance However there may be other 'benefits' available - I didn't realise that a carer can be entitled to have respite care organised to give them a break (I looked after dad at his home for a while - he's now in a care home)
have you contacted the council about a reduction of Council Tax? I only mention financial stuff as the extra cash can help fund care - and your family is entitled to it
have you contacted your local Alzheimer's branch? - they may have contacts for sitters to give you some time out of the house
I wonder if there are any local societies for the blind/partially sighted RNIB eg for help for your dad
I appreciate that while you are working it's difficult to get to carers meetings/cafes - while you are off, maybe you can pop in to a few? just talking to others going through similar experiences can help
and of course there's this forum - glad you found us
sorry to seem bossy - just wanted to give you some options
your parents matter a lot - however so do you - you cannot compromise your health and your future - if your siblings have said "if there's anything ... ", well tell them there is - tell them you have tickets to a film, the chance of a lunch out (fib!) and they need to fill in for you - tell them you are at breaking point, and as marionq says, that they need to organise something every other weekend at least or you will breakdown - don't ask: TELL - if you can't do it face to face, write to them and suggest a weekend/evening 'sitting' time for each of them so there's a clear expectation from you that they will agree
finally (honest) - please consider for the future that your mum will be well taken care of in a care home; some will take both your parents - or is there sheltered housing available near you (though not sure all are suitable)?
ignore any or all of this
very best wishes

 

[fizzie]

Hi Smartie
I understand how you are feeling. I looked after my mum with dementia and my husband with cancer and two teenagers and worked and I too had no friends until I reached the point that you have now. I insisted my Mum went to lunch club and then another club in our area for people with dementia. She didn't want to go but I had to tell her that this was the only way we were all going to get through this together and be able to keep her at home which she desperately wanted. I had to be blunt a number of times and she did go and then, miracle of miracles, she started to enjoy it. I then brought in a carer for an hour in the morning to sort out mum and see her off on her bus so that I could concentrate on the others and not end up at work in a dreadful state!! Then just before my husband died I found our local carers cafe and it was my lifeline - just once a month - a coffee and cake with people who understood and I began to make a few 'friends'. Then I took the plunge and had a carers assessment and managed to get 3 hours (allocated 6 hours but never got it!!) at the weekend for my children. Life gradually became easier with the help and I began to feel slightly more connected. It takes some more hard work to get the ball rolling but I can only strongly suggest that you get it started as soon as you can and take a bit of a hardline (I know how difficult that is) with Mum. I had to really grab it back for myself and it will never be the same but perhaps we are not looking for 'same'. Good luck with this - thinking of you xxxxxxxxxx

 

[Essie]

That's a fantastic post Shedrech - everything I was going say, you've saved me a lot typing!

I will therefore just reiterate smartieplum everything that has been said - you don't have to be your parent's carer, you really really don't. None of us planned to be a carer, it happened because of need but there are many ways to fill that need - I do know that when you are exhausted from caring there is no energy or time left to explore other options but please do try - or get one of your 'anything to help' siblings on the case or a good friend - residential care comes in all forms these days and somewhere that has several levels of care on the one site, or a sister site so that the care could adapt as your parents needs change might be the answer.

I have no idea of the financial situation but very often other siblings will be very happy for one person to take on all the caring in the family home - for them it's great, it's free and it preserves their inheritance - if that is a factor in your situation well, you can guess what we'd all say about that!

In summary I would say take back control - say 'whoa, whoa, whoa' to the roller coaster you are on and a step back to review everything. And keep posting on here - questions, feelings or just to have a moan - I promise you we will always understand.

 

[Bessieb]

Hi Smartieplum,
I really feel for you and know what the loneliness feels like. Although I wasn't living with my parents before they went into a CH the loneliness of making decisions and trying to organise the right thing for them without support was overwhelming. I have never cried so much.

You need to focus on getting support in place so that you can get your life back too and make sure there is a balance. You didn't sign up to be a carer and although you want to be there for your parents it doesn't and shouldn't mean your life has to stop.

You need to start telling everyone that you can - Social Workers, lunch clubs, assessors etc - that things aren't working well and you need help. Don't give any room for doubt. If they think you are doing it all no problem they won't help. So you need to start telling them clearly and assertively that you need help. You might want to give them a deadline.....a return to work date for you, or a work trip meaning you won't be available.... and therefore your parents will be 'vulnerable adults' on their own might be helpful.
I might be struck down for this later but I confess to inventing a work trip to put pressure on Social Services to step in. I couldn't think of another way to stop them delaying and assuming I was doing it and I was completely sinking. A hard deadline of being unavailable was the only way - and it did help enormously. Just a thought anyway.


I hope the lunch club goes well. You need the break but start the shouting for help asap.

Bessieb

 

[smartieplum]

Thanks all so much for your kind words and practical words also. Had a home assessment visit this morning and have agreed, so far, to a trial of home help at lunch time. Had a wobble this morning and my sister came over and a hug was welcome! Money and benefits are in place and I've a carer assessment also set up for me. A listening ear is great and I thank you all. I'll keep you informed of any progress or otherwise!

 

[Shedrech]

Good on ya smartieplum - we're here whenever so do keep us up to date