Urgent tips please for finding a GOOD nursing home!

Ok I think I've realised this isn't going to work πŸ˜“

I can't tell you how I feel cos it hurts so f****** much!!

If even for respite I think putting my Dad in a home may just finish me off.....

My Dad is MY DAD and you know what he is very very sweet, kind and oh so loving! He's very very scared about my dear Mum and obviously not be able to see her and protect her is something he is finding incredibly difficult if not impossible to comprehend?!

If I send him off somewhere no one will cherish as we do!! I know that, I'm not stupid! I know he'll decline very quickly and the outcome will be death! Equally I know that's the future anyway! I know he won't be fed properly, cleaned properly, no doubt often be left in a dirty pad, I know no one will sit and talk to him and love him! I know no one will switch the tv over for him. I know no one will come straight away when he is coughing up flem. I JUST KNOW NO ONE WILL CARE AS WE DO! And I'm f****** scared of that!

Unfortunately the hospice can't take him, if they could I would not be scared or concerned or worried as hell!!

I also know that mum isn't out of the woods and the recovery will be LONG!! But what I do know is this, with good care from ME she will recover and could have another 10 to 20 years! My mum is easy to look after! And I want to enjoy that with her! I also fully understand my Dad is coming to the end of life!


Help me please!!

30 Replies

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  • Oh sweetheart I wish I could give you a huge hug. I lost my mum and dad just less than 2 years ago and I understand your worries. I'm here if you want to TNT and rave. Have you and sisters or brothers who could help you? My heart goes out to you.

    Keeping you in my thoughts

    Loads of hugs Tillyhugs πŸ€—πŸ€—πŸ€—πŸ’πŸ’πŸ’

  • Aww thx you Tilly, it's so hard isn't it? I'm very sorry about your parents so so sad! My brother and sister have families and loads of commitments and live an hour away so it's 99% down to me x

  • My parents wouldn't let my sister do anything so it was all left to me. I thought thanks a lot. But turned out it wasn't my sister's fault, it nearly split us. I am so glad I found out and I still have the love of my only sister. I understand we all have families but hours should over some help. Hang on in there. Here if I can be any use

    Love Tillyhugs xxx

  • Thx u darling x

  • Oh Amanda so much on your shoulders not really fair for you, you are too young for all this. You are hurting, pulling yourself in all directions. Maybe you should think about live in career it does work, it works for us, I still get tired, but I can walk out the door, and know that George is safe, and I am sane, still exhausted but much better, the other careers come in and double up at care times. Amanda you are going to make yourself sick, please look after yourself. Sending you a big hug . Yvonne xxx πŸ’•

  • Thx you Yvonne I'm considering this too x

  • Could be the answer for you xxx

  • Very hard indeed when you all you want to do is have then both with you at home. You find yourself in a situation that has occurred out of any control for any of you & so quick.

    I've seen many on here offer advice and say when the time comes for home you can then return to being the daughter Dad dynamic and can go regularly to see your Dad and make sure they are doing the care at required level. From what I've seen you aren't going to take any crap from anyone.

    With my practical head on I would try and see if you can get recommendations on local homes. The PSPA has advice in their info about homes and your local area advisor or local support group will probably know what homes are decent for PSP. Do the hospice know of good ones also?

    Big love xxx

  • Thx Spiral I don't think the hospice can recommend but if I tell them about one they'll give their opinion and thx I'll look in the pspa now x

  • Amanda I understand completely about the care home ... consider a live in carer ?

    I do hope your mum may show signs of recovering today ... lots of love and strength to you Amanda . Xxx

  • Thx Mary x

  • I think you are expressing the fears of us all, Amanda.

    Its an intolerable position. In crisis I expect it depends on which Home has space ?

    A live-in carer might be easier to set up quickly ?

    Please look after yourself - for everyone's sake. I do hope your mother is making a good recovery.

    Lots of love from Jean xx

  • Thx Jean for your understanding as always x

  • Hi I have been looking at homes recently for respite care and my opinion is they are more money orientated than caring, I think it is disgraceful and refuse point blank in putting my partner in that position. I cannot find anywhere suitable here locally so therefore am not getting any respite (which I could do with) its all soooo wrong. xx

  • Very very wrong Escada!! X

  • The two homes Steve went into, the staff were lovely. Always joking and laughing with him. I know from the things they would say to me, that they sat and talked to him. He was always clean, well fed. Of course if I was there, they would expect me to feed him. They loved Steve and looked after him, one reason, he was soooo much younger than anyone else and a lot sicker, even though he could barely communicate,each and every one, found a way to get through to him. More than I could at times. The staff are trained to care for sick people, a lot more than hospital nurses and doctors are!!! So try not to worry if you have to go down this route. Both places Steve stayed had had patients with PSP, another bonus.

    Lots of love


  • Those home sound very good indeed Anne x

  • Hi Satt

    Google Nursing Homes in your area... There will not be that many.

    Telephone each one and speak to the senior nurse - usually the manager and ask:

    (Say who you are and you are looking for a placement)

    Have they experience of PSP?

    What is the make up of their residents... Some places have very high levels of dementia service users or people who are particularly elderly and that might not be a good environment for your Mum... Discuss it with them and most homes are fairly open.

    You may now be down to one or two possibles. Check these on the Care Quality Commission Website. The CQC is the inspectorate and they produce reports on each home which you can download.

    If you are lucky you will now have one or two left standing. Go and visit at lunchtime. Lunchtime is a good time for you, less so for them, that is the time they are particularly stretched staffing wise and you want to get to see the food too as well as a room.

    Staffing should be around 8 staff per patient overall (remember they have shifts).

    It sounds lengthy, but actually it is quite quick and simple.

    Give me a shout, if you like, and I will help out on getting reports or whatever.

    Good luck




  • Simply brilliant

    Thank you Kevin x

  • This is great advice, I too may be looking at nursing care soon so I'm writing down these points for reference later

    Thanks Kevin.

  • I so wish I had the words to comfort and reassure you that all will be well soon. But with terminal illnesses, we can't have that hope. Praying that your Mum continues toward better health, and you can find just the right help for taking excellent care of your Dad. Oh, how I wish we on this site could ease your painful situation. Please know you are cared about...

  • Awe thank you ❀ x

  • There are good nursing homes. I'm in SE England and my parents are in the same home. My mother has dementia - she is 96- and dad is bedridden with heart problems. The home is open all the time so you can visit whenever. A lot if the staff are east Europeans and are lovely. They give my mum a hug and a kiss . Dad is turned every hour and he has a special bed which pumps up and down. They have to do everything for him. They are superb. You're in a terrible situation and I pray that you will come through. X x

  • Thx you

    Where is the home? X

  • It's in Reigate Surrey. It is called Wray Common Nursing and Residential Home.


  • No!!!!! I'm going to look at it now, that's 25 minutes from me! Can I pm you please?? X

  • Yes of course.

  • Amanda try not to worry. There are good nursing homes out there. Derek was in an excellent one for the last eight weeks of his life ( in Sevenoaks SE England). They really did care and they did sit with him and talk to him. I went every day and it really felt as if we were a team doing the caring together. I could go any time day or night.

    Try to find one that has experience of PSP, not too many dementia patients, fairly small and above all one where you get on well with the manager. She/he is crucial to the running of the place and ideally she will be very hands on and visible I.e. Not in an office somewhere but actually directing operations and talking to patients. Don't be swayed by plush hallways, lavish flower arrangements and en-suite bathrooms but do check on staff ratios and length of service of key staff. If the staff stay it is generally because there is a happy atmosphere.

    Do hope you can get things sorted and that your Mum improves.

    Vicki x

  • Vicki

    Brilliant tips thank you soooo much, hadn't thought about length of service of staff!! X

  • I know this is such a horrible difficult decision, and one I was thankfully spared from making. But there are good care homes! It doesn't have to be such a terrible thing, you just have to try and pick the best one possible. I now work for a charity as a placement adviser for care homes in South Wales and help older patients being discharged from hospital settle into suitable homes. The homes can vary significantly but some of them are wonderful ! You see the residents thrive, especially after leaving hospital. The extra time and care that homes can provide compared to hospitals and exhausted relatives can be really positive! It's still a very difficult decision though, I feel for you xxx visit as many appropriate ones as possible and be honest about your dads needs. Not all homes will be able to cope with all the facets of PSP but good ones will. Read the care quality commission reports for general nursing homes in your area. Also be mindful of CHC, although this means the NHS pays all costs, getting it granted means care home options are reduced.

    Which county are you in? I'm presuming 24/7 CHC care in the home isn't an option? We were fortunate and lived in Northamptonshire which was piloting it so I had night cover 7 nights for the last few months. Thoughts are with you all xx

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