Good afternoon does anyone else find it hard being a carer I’ve opened this group for like minded carers my dad has Parkinson’s and is 88 it’s very hard at times as his mobility is bad and as a carer I’m just looking for support and trying to find out what’s out there for carers I’ve not been on here long but it’s nice to know that people are there to give you support and find the forums very helpful xx have a good weekend everyone
Nikki, it’s so, so hard. I’ve had ten carees, in various ways, over the last 40+ years. Before my son was brain damaged at birth, I had a wonderful llife. I met the man who would be my husband when I was 16, married at 19 (in between he drove to Australia with a group of Scouters!) We bought a house, went back to Australia for 3 years, where I used to ride a powerful motorbike in hot pants and a midriff top! By the time I was 25 we had bought our second house in the New Forest with half an acre, mortgage free. Our first son was born and I felt like the luckiest girl in the world, a lovely baby, a handsome husband and our own cottage. Two years later our long awaited second baby was born and life was never the same again. I’m now 71, but still mourn my old life in some ways. I’m now a wreck. I wish more than anything else that I had stood up for myself better, taken more care of myself, but the more I pleaded for services the more I was seen as a pain in the a***. Then our parents all living nearby and all were entitled to highest DLA, so 5 carees for a while!!! Don’t be the family “sacrificial lamb”. If you love someone enough to care for them, they should love you enough to give you 2 weeks holiday, even if it means residential care. Insist on breaks, a dishwasher, a tumble dryer. Don’t try and be Superwoman, start yelling for HELP!
Yes Nikki - caring IS hard!!
Some days are easier than others; some weeks are easier than others.
It can be lonely and tiring and only carers understand what it is really like.
Does your Dad receive any support from care workers?
Thanks @Melly1 my dad has carers 3 times a day coming into his house and I only live down the road so I go round a couple of times a week I couldn’t care for my dad full time it would be too much hard work. I couldn’t cope with the personal care. Although I do have to sometimes do it enjoy the weekend and I hope the fireworks aren’t too bad by you xx
Nikki - NO-ONE gets it til THEY have to do it - and if it’s for a loved one it is doubly hard.
Graham’s bad night left me drained before I started this morning - but just have to suck it up and get on with the day. Now I have done everything I intend to except cook some food this evening - so having had a lovely long hot shower, I am now making a mug of tea to watch the last few minutes of the rugby league and then doze in front of the fire. G still hasn’t moved from the sofa - other than to go to the loo (phew!) so he is happy to stay there for the rest of the day as well.
Hope your day is reasonable.
@Nikki_Anne, hi Nikki, it is tough being a carer. Sending you a big . This forum is such a god send and the guys on here are lovely. I’ve found it so supportive. It really helps to be able to talk to others who are going through the same.
When I first started caring I found it useful having external support. I had a cleaner once a fortnight and applied for various funds and grants in order to cope alone. Citizens Advice website was a good online resource too when it came to benefits. Good luck. I kept a diary to describe my feelings each week. I went to local libraries to get free leaflets and pamphlets designed for families in general as well. I found out about social clubs and signed up for a few different ones within walking distance. But if you cannot leave the house try to do share and learn sessions hosted by Carers UK online in addition here.
Some days are more difficult than others. The bad ones are when I feel completely overwhelmed by it all.
It is very very hard. I agree some days are worse than others. I am glad that you do not live with your dad though, but I do understand that you do care and worry about him. There are no easy answers but you can only do your best. It might be worth you at least contacting the local Support for Carers group if you have one in your area? A telephone befriender (and there may be a waiting list) could be a safe place to vent and most have been carers themselves.
Counselling is another option. The Forum is great and I think everyone would posting would agree it is a huge struggle.
@thara_2207 yeah it’s though I’m just trying to find groups out there to help as I didn’t know there was any out there I just thought there was only help for the person that was suffering. I find this forum very helpful and I will certainly look at other things that carers uk offer xx
Are you getting any help at all at the moment, or is dad refusing to have anyone else?
You are his daughter, not his slave.
Start by listing all the jobs you do, for a week, and then shuffle them into a list.
With my mum, I handled all her money, as she had never done this before, and really just wanted to know that she could order what she wanted from her catalogue!
After various issues, mum then had someone to do her cleaning and ironing.
Actually, if she ran her house differently there was absolutely no need for any ironing! He doesn’t need to wear cotton woven shirts, cotton jersey polo shirts are easy care and far more comfortable.
Are you expected to look after the garden? Another job someone else can do!
Does he have a tumble dryer and dishwasher? Have any ready meals?
Has anyone told him that he is entitled to highest DLA?
He is probably exempt from Council Tax as he has a severe mental impairment, i.e. Parkinsons?
Do you manage his benefits as his “DWP Appointee”?
It’s really important that someone other than you is involved with him now, just in case you have an illness or family crisis. A “cleaner” can actually be a carer in disguise. If she starts when you are there until he gets used to a “stranger in the house” she can gradually do a few more odd jobs that you are left to do just because he can’t.
Did he run round his parents the same way as you are expected to run round him?
I found asking myself this question very helpful. My mum did very little for her own mother.
@bowlingbun he doesn’t get DLA he gets attendance allowance didn’t know he would be exempt from council tax though x
People with “severe mental impairment” are exempt. It’s an awful upsetting phrase but I believe that severe Parkinson’s would come into this category? I’m only a lay person, maybe ask the Parkinson’s Society about this. It’s easy to claim, the council responsible would send dad a form giving authorisation to speak to his G P. If the claim is successful it CAN be backdated! Martin Lewis, the money expert helped someone who reclaimed about £9,000! I’ve helped lots of people claim this. Some councils in the past have been in denial, so if you have a problem with them, please say.
I am finding it tough too. 18 months caring for my husband with MS. Carers 4 times a day. I really struggle with them in the house but know they need to be here. I reached out to my local Carers group. I currently see a well being practitioner for my anxieties. Also local Age Uk can help. I use their gardening service.
Isolation and lonliness is the worst. Keep being told to be kind to myself. Easier said than done.
Just been reading this article about caregivers. I know it’s about Americans but the feelings are the same. The 500+ comments at the end of the article are interesting too.
Thanks for sharing Penny.
Thanks for this - I was about to share it myself and you saved me the effort!