Hi , I have just joined you as I am finding life hard at the moment . My husband and I made the decision to move to the south coast bringing my mum to live with us. Within 3 months mum had been diagnosed with Parkinsons, fallen over breaking her hip and shoulder. She was in hospital for 4 months and having developed equinus was told she would never walk again . She was sent home with a package of 2 carers 4 times a day. Our house no longer feels like my home, we both work full time and I dread going home . I feel so guilty but I am exhausted from everyone coming into my home and I feel like I have no privacy . My mum has now been told she has Sundowners syndrome and can no longer reliably take her medication that I put in dossette boxes. She us a different oerson in the evenings , cobdused and anxioys and constantly asking me to explain her medication. She gas gad several ooerations on ger feet and can now walk but all she seems to do in the daytine is sleep. I am off work at the monent as I am waiting for a hip replacement and being stuck in the house with her is driving me mad and then I feel so guilty. Sorry I seem to have had a long rant on here , Thanks for listening xx
@CAZ5714….welcome to the forum, I’m so sorry to hear how hard things are for you. I’m glad that you’ve reached out to this forum. It will give you somewhere to be able to talk to others that are going through/have been through similar situations. I can relate to what you are saying. My situation kind of echos yours. My husband and I moved into our bungalow 3 years ago and my elderly parents moved in with us. Almost immediately after moving in my husband, who already had bad mobility, had several medical emergencies, a stroke, a hernia that twisted his bowel resulting in emergency surgery where he was given a 50/50 chance of surviving the surgery (he was very overweight at the time), then sepsis. He spent 7 months in hospital then a rehab centre to learn to mobilise again. He came home and we had carers coming in, 2 carers each time, 4 times a day. He was also using adult nappies and weeing in bottles as he couldn’t/ wouldn’t go to the bathroom. Physio withdrew within the first week of him being home as he wouldn’t work with them. I couldn’t manage, I work full time as well. Social services moved him into a care home and he blames me for being there and is now divorcing me. Don’t feel guilty, your feelings are perfectly normal. I also dreaded coming home each day as I never knew what I would come home to. After 7 each evening we were also left on our own to cope. It must be hard for you especially when you need a new hip. Always here if you need to talk. Sending big hugs 
your way.
Thanks Sue , your situation does sound very similar and its wonderful to feel like i am not alone . We went through the full financial assessment for the carers and they make mum pay out of her pension , how does it work when they get to the stage where they need a care home , is it the same process? The adult nappies are awful , we are on our 3rd lot of carers now and these ones seem much better. They seem to respect my bungalow better . I opened a drawer once just before going to bed to find they hadnt put the lid on the squash properly and it had leaked everywhere…not what i wanted to clean up last thing at night ! And all the extra washing of the incontinence pads and bedding every day! I am so sorry to hear your husband has been so awful , fancy divorcing you when all youve done is try to help him .
@CAZ5714….you’re definitely not alone. I understand how tough it is, especially when you feel like there’s nothing to look forward to, it will get better even though it’s tough now. If your mum has savings of over £21k she will have to contribute towards any care home costs until she gets below the £21k and then social fund it. Some carers are definitely better than others, that’s good that your current ones seem better. When you’re tired and emotionally worn out the littlest things can push you over the edge so I imagine finding the spilt squash would have been upsetting for you.
Yep, I know what you mean re the washing, I was having to strip the bedding and wash it every day. I brought water proof sheets and also a waterproof duvet which helped. It didn’t help that everything was king size as he was in a large hospital bed at home.
Unfortunately he’s never seen it from my point of view as to how difficult it was and feels like I’ve abandoned him despite me trying to talk to him about it. To be honest all I feel now is relief that I don’t have to live like that anymore even though there is sadness that it’s come to this. It took me a while to realise that you can’t help someone who doesn’t want to help themselves and at some point you have to look after yourself.
Hi @CAZ5714
welcome to the forum.
Goodness you have had to cope with so many changes in such a short space of time.
A wise member on here used to advise don’t say you feel guilty, say you feel sad; sad for your Mum that she has been diagnosed with Parkinsons, had the fall and now is suffering from Sundowning and sad that she now needs the level of care that she does.
When you moved to the coast and took your Mum with you, you didn’t know what was going to happen. Juggling her now high support needs, having strangers in your home, holding down a full time job and caring every evening etc is very tough.
It does sound as if your Mum is approaching the stage where she needs a team of people to look after her. Although this is undoubtedly very sad, once she is in a care home - you will be able to resume your daughter role again and have quality time together,
Hi Caz,
Can I ask how old mum is? You?
Is mum claiming all the disability related benefits which she is entitled to?
I’ve had two knee replacements. You will need rest and help as you recover from surgery, and you won’t be able to do this unless mum moves out. We had a forum member with a husband to care for, permanently disabled because no one cared for her after her hip replacement.
You need to find a nearby care/nursing home so mum gets the care she needs, before your op. Details of all registered care homes can be found on the CQC website. Make a list of the homes and start looking, nearest first. Make notes of each home. In a former life I helped many people to find care homes, it’s like choosing a house, usually you know within a few minutes! Before you start looking, you need to look at mum’s finances. Above £23,000 she will be self funding, below the council will subsidise her but you need to check if the home accept council clients. Do you have Power of Attorney for mum? Lots to think about. The time has come when mum needs round the clock care.
When did mum last have a Needs Assessment from the LA, and you, a Carers Assessment?
Gosh, Sue24, that is a LOT! I hope you’re doing ok x
@Blomst…thanks, I’m doing okay. Hope you are too?
Hi , mum gets attendance allowamce , and she is really no bother as she mostly sleeps but that is such a big change in her , i really dont think i am here to entertain her! Just been for my pre op and poured my heaet out about mum , they were very firm about putting myself first so, i have gone to my local beach cafe to see the sea, sitting drinking a mocha in my happy place beside the sea…i feel free !