Really struggling

[Bobbiejo21]

Hello everyone I haven't posted on here for a while. I'm a full time carer for my mum who got diagnosed with CBD almost 2 years ago. She's been homeless since she got diagnosed as her partner didn't want to look after her. We're still waiting for the council to house her permanently. I'm finding things so stressful trying to deal with everything. I have 3 brothers who hardly help and I feel really angry all the time. I have a partner and 2 kids who I feel like I'm not good enough for x

[Yvonneandgeorge]

Oh dear sad to read your post, you must be a wonderful daughter and mum to care so much about your mum. Don’t know what to say about your brothers, it’s not fair to put all this on to you. Sending you a big hug, council seem to be dragging their feet. Stay strong it’s hard. Yvonne xxxx

[Helen119]

Hi

Sounds really stressful, from my own experience you may need to ring the council regularly every couple of weeks, depends on the system they use, do you have to bid on properties or are they just going to house her. I got doctors and Pallative care involved they wrote to the council and said how urgent it was due to patients welfare.

As for you not being good enough, I’m sure you are, you are just juggling everything at once, and that is hard, if they are old enough to understand try explaining some of it to them.

I really hope you have some luck soon, try some relaxation exercises once you get to bed, might help.

Love and hugs xxxx

[HilsandR]

Hi Bobbiejo21, believe me, you are doing a fantastic job looking after your mum and family - you are just too bogged down with it all to realise that. As for family and friends helping out, I'm afraid it's an all too sad fact that when the going gets tough these people fade into the background. There is help to be had but you may have to shout from the rooftops to get it. The council should surely be giving your mum priority housing due to her condition. Are they aware of her progressive illness and the implications going forward as her housing will need to be a good match for her care needs, for example I would imagine she will need extra care sheltered housing. Get social services involved, her GP and if she is under the care of a neurologist, make him aware of your situation - maybe he can write to the council to explain the implications of CBD. It's not easy but you have to make sure you are heard in order to get the help your mum needs, you can't do it alone. I really wish you well in getting things sorted out and I hope you post again in the not too distant future with some good news. HilsandR

[doglington]

Every one here understands feeling not good enough. It is inevitable when you are exhausted, stressed and overwhelmed.

I'm sure you are doing well in stressful circumstances.

I hope it is resolved quickly.

love from Jean xx

[Dance1955]

Hi Bobbiejo21 It’s a horrible disease you need research all the help you can get and get everything you are entitled to people don’t realise unless they are dealing with it themselves don’t give up I know we always find ourselves in our own when theses things happen just keep trying for help xx

[Amth_1948]

Where is humanity. Do we love someone when they’re well. I’m not patronising you but your a wonderful loving person. I’m my wife’s carer who has CBD. Yes, I get frustrated, anger because it’s very hard looking after someone. You only can do your best. To me you’re doing a fabulous job. I hope you get your help & wish you well.

Kind regards

Alex

[Sharon637]

Hi Bobbiejo21

You are good enough! Being a carer is tougher than anyone on the outside looking in will ever know, and with it comes a whole range of emotions we never knew we were capable of, including self-doubt on a crushing level. Every day we push it aside, make choices and decisions we can never be 100% sure are right and do the best we can. It's all a carer can do, and it makes every one of them amazing.

I'm sure your partner understands this is a tough time right now and you are stretched thin in too many directions. The kids will understand too, either now or later. That chat mentioned above is a great idea. It might help you too to get how you're feeling off your chest, and your partner may not have realised you're feeling that way.

I'm shocked at the council, but as many people have said above, perhaps they don't understand the illness and it's seriousness. All the practical suggestions given are spot on and I really hope they get you somewhere. Push for that help. Don't feel guilty for feeling angry at the lack of support. It's your right to feel angry. I assume you've approached your brothers calmly and stated a case for them helping out and if they've refused that's their decision and one they have to live with, but don't let yourself be dragged down by negative emotions. Right them off in terms of practical help, but think if there is any other way they could support you, like doing something fun with your kids or even helping you draft letters. Maybe they just can't bear to see their mum deteriorate. Some people aren't cut out for that. Some people step up regardless, and some just can't handle it and would rather pretend it isn't happening. Maybe they'd feel good about finding ways to help that doesn't directly involve them in the care, and you should take every tiny scrap of help you can get. No one can pour from an empty jug.

I'm sorry to hear you are struggling, but I know you'll get through, even though there will be times you feel you can't go on. Everyone on here will because they are the ones that have stepped up, fought when they didn't feel they could fight any more, and got up every day to do it all over again. You're strong, this will pass, things will get easier, and they will get harder, but you'll come through, and the fantastic people on here will always be the greatest support network for you. Everyone here understands, feels your pain, and can offer the greatest advice.

I really hope everyone comes through for you and you and your mum get the help you deserve.

[Bobbiejo21]

Thank you all for taking the time to respond. It's so hard not having anyone to talk to who understands what I'm going through. When my mum got ill all my brothers promised to be there for each other and see my mum regularly. That lasted a month then one moved away and only gets in touch when he wants something. The other 2 go 4/5 months without seeing my mum. I have spoke to them many times and broke down telling them I can't cope with everything on my own. They work and one has 3 children so say they're too busy. The only reason I didn't go back to work after i had my son was because I became my mum's full time carer so I could help her. They have said they can't handle my mum being ill but I can't either. They go home n forget about her whereas I'm the one stressing about her being homeless, deteriorating, making sure she gets all her medication, listening to her when she says she wants to kill herself but I'm the only thing that stops her. My partner gets angry with me being upset all the time and says it's going to break us up if I continue to let everything affect me. I don't know what I am meant to do i can't help crying. I wish I cud go home and switch my head off worrying about it but I can't. I broke down to my dad and step mum who said I'm depressed and need to go to the doctors but the last thing I want is for them to think I'm an unfit mum. A few months after my mum was diagnosed i had an ectopic pregnancy and I feel like I haven't even come to terms with that happening cos I had to be there for my mum. Even after surgery I had to take my son on the bus to go c my mum cos my brothers were too busy to even c her when i should have been at home recovering.

The council r finding any excuse possible to not house my mum. They have all her reports from doctors, neurologist, ot reports, speech reports but they still come out with excuses. Sorry for the long response. Sometimes I feel like I could just scream.

[Hidden in reply to Bobbiejo21]

Hi Bobbiejo, sure wish l could give you a big hug right now & bake you some nutritious oatmeal cookies. The old saying 'life is not fair' is so true. But l will tell you this... l am proud of you for doing all you do for your mom & your family.

Keep knocking on the council's door... l know it is not easy... and l wish you had more support from the men in your mom's life, but they are who the are... l can only imagine they have always been this way (but hope they will wake up soon). Sending gentle hugs of support, Granni B

[Heady]

OMG, an ectopic pregnancy on top of all this. I had one many years ago, it takes a long time to recover, physically and mentally. As to all your other problems. All I can suggest is screaming from the highest point and to everyone you can think of, until someone hears you. Unfortunately, I found nothing got done unless I broke down in front of someone in high places.

You are doing a great job, let no one tell you otherwise. Being a carer meaning being the biggest pain in the bum you can possibly be. The "angels" that we are all meant to be, is a load of old nonsense. We are tired, bad tempered and hate the world and everyone in it, including our loved ones at times! Use this anger, channel it at the authorities and hopefully, you will get the help you need ASAP.

Sending big hug and much love

Lots of love

Anne

[AJK2001]

Oh what an awful time for you. Where is your Mum living at the present? Have you got Social Services involved? Do you have carers coming in to help out? Is your Mum getting all the benefits she's entitled to - PIP, Attendance Allowance? Have you been in touch with somebody like the Red Cross or Independent Age to see if they could provide a sitter/buddy once a week to give you a break. If your brothers' aren't good at visiting could they help out in other ways - could they chase the council, do an on-line shop, check benefits, etc.

Has your Mum set up Power of Attorney? If not & she is still considered capable, suggest you get this sorted so you can manage her affairs in the future - perhaps a brother could organise this?

Can you get the brothers that do visit to stagger their visits and you don't go that day (it's tough I know not to go) but have a day with your family and though you may go back to a big mess, you will feel able to cope with it better, just for having that short bit of downtime. I speak from experience as I am rubbish at giving myself time off but when I have done it I definitely feel the benefit.

Hugs

[Hidden]

You are doing the best you can with a bad situation. Larry always says to get action from a bureaucracy is create a crisis. Your other being homeless with PSP is a crisis.

[NHGrace]

Oh, bobbiejo21; I can SO relate!

It is an untenable situation. Don’t underestimate that. My mom died 4 months ago after 2.5 years and I have two small kids also. It was the most hectic, saddest thing I’ve experienced, but in retrospect (now), it was a short amount of my time. She died in her sleep, still eating and drinking well and regular food. And she was able to laugh until the end as well. While I mourn the missed opportunity to sit vigil (I assumed she’d be beridden for long enough that it would allow my life to slow down enough to just “be” with her), that didn’t happen. One day all the chaos was just gone as fast as it’d come. It took a few months for the feeling of constantly needing to squeeze errands into the slightest slice of time. And then came the sadness. The injustice of it all.

Just keep reminding yourself it is a nearly impossible task and you’re doing the best you can. No one expects perfection, and we’re hear to listen when you need to vent or seek reassurance. Onward and upward.

[Servena03]

Bobbiejoe, my heart goes out to you, I am a carer for my hubby, I get so frustrated but try not to let him see it, and I have two children who help out and visit when they can , guess I'm one of the lucky ones. Your mum's housing, is she willing to go into a independent or sheltered housing, we were given a place in independent living, it was the best thing we done, we have made freinds, got company when I want it or peace and quiet. We have carers who come to dress him and put him to bed as it now takes two people to do this. I feel your mum would really benefit from this, that way you only have to visit her and look out for her personal needs, not so much caring, oh we also have 24hr emergency bell pull. I actually viewed four caring homes near, chose one, then kept phoning the manager for vacancies, one eventually came, she rang me to view, said yes, then the manager sorted the council out who sent someone to assess us, so lucky.

So there's no reason you can't have the same service.

Keep your chin up, and believe you me you're doing a great job.

Sending lots of hugs and good luck wishes. Try and let us know how it all goes. Xxx Jean