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Grief Stricken


Registered User
Jul 16, 2014
North Lincolnshire
I can't stop crying. on 22nd May my Pete went in for respite for 2 weeks. Its been extended with the view of it becoming permanent. He's in a home that I'm unhappy with. I realise that the care they give will not be the same as I give him but his basic needs are not being met. He's incontinent and his pads are only being changed sparodically which has resulted in an open sore. I reported on the day (last Wednesday) and nothing had been done. I purchased some suda cream myself yesterday. It hadn't been passed on at shift change so staff yesterday were totally unaware. He's not always eating 'he said he's not hungry' and yet when I take him later to the dining room, get his meal, cut it up, he eats most of it. Including my own sandwiches, a sausage roll that I had brought him and a trifle...not hungry?! This has happened twice now. and so it goes on..My biggest fear is they are talking about DOL's in a couple of weeks, If I agree to this I will in effect be signing him over to the state. I'm not convinced. I even went to the home where he had day respite yesterday in desperation. It's not modern like this one, but it's home from home. I know they really do care and its not just a means to an end. On top of all this 2 letters arrived yesterday to tell me how much this is going to cost...I can't afford it and the only way out as far as I can see is bankrupsy. I work full time but tomorrow I will start making calls to try and get help and advise. I miss his so much. I go to see him every day. I guess I am grieving for the living and will have this to go through again one day for real.Lets hope not soon. It's his Birthday today :)
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Sue J

Registered User
Dec 9, 2009
A so sorry Witsend-1 :(. You sound totally overwhelmed. You can get advice though as you are going to that hopefully will give you and your Pete some other options.

Love to you


Registered User
Apr 24, 2013
It sounds as if you badly need advice and a financial assessment. No one should be made bankrupt in the UK because of illness. Phone social services asap and tell them your dilemma. You might phone the Alz Soc helpline and get advice from them too.


Registered User
Jul 20, 2011
this is extremely distressing for you and I think you need to talk to someone
Age UK lines are open today until 5pm 0800 169 2081 this is a free call
Alzheimers society helpline is also open 0300 222 1122 until 4pm I believe but this is not a free call it is charged at local rate. They will be able to talk you through the financial situation - you need help and support with this

The home should not be treating your OH in this way. His pads need to be changed regularly and the sore is completely unacceptable and could get infected. The best way forward is to put your concerns about food, pads and sores into writing - that way it can't be hidden but can you phone the respite home (you are so right, it doesn't matter about brand new or nice fittings, what matters is care) and ask them if they have a place, if not put him on the waiting list, then phone your adult social care and ask for the duty desk and tell them about your concerns and that you want him moved to xxxx asap or as soon as there is a place. Don't be fobbed off, you are in control.

Then if you can face it please phone the Care Quality Commission and report the care (if your OH is receiving poor care then the chances are that everyone else is too) you can do this by the web page http://www.cqc.org.uk/content/report-concern-if-you-are-member-public or by phoning on 0300 616161. You might not feel up to it now but please do it when you can.

No wonder you are feeling unhappy when his basic needs are not being met. You take care and keep posting, we are all here to support you xxx


Registered User
Aug 25, 2015
South coast of England
I am so sorry that you are in this position. Your concerns about the home are not just matters of preference - they are very valid concerns about lack of care. It does sound that moving him will be the best option if it is feasible.

Wiser people than I have given you advice about getting financial assessments etc. You should not have to bankrupt yourself in order to get Pete looked after!

Special days are always difficult for the PWD's loved ones, I hope that you and Pete are able to have as good a day as possible.


Registered User
Apr 30, 2013
Hi witsend. Your username must be echoed by so many carers here. :( I'm sorry, but sometimes you just have to put your foot down harder than what you're used to doing, especially regarding those who cannot speak for themselves.

Ask to speak to the Manager, or whoever is taking this role, on the next visit. I usually found a "pleasant" tone (through gritted teeth :mad:) worked better. Something like "I know you must be as distressed as I am that Pete has developed an open sore, which I can only guess is due to his pads needing to be changed more frequently. I did provide some cream, but not everyone appears to be aware of this and using it. What, do you suggest, we can do?"

Once the Manager has noted all this on hubby's records, then continue with something like "And I am so puzzled because whenever I bring him something to eat, he can't wait, and woofs it down and yet I'm told he refuses food, because he's not hungry. What, do you suggest, we can do?"

Regarding the cost, nobody should be in fear of bankruptcy. I don't wish to pry into your private affairs, but if your hubby isn't self funding, ie the Local Authority are charged, and then they charge you, the most that your hubby has to pay is his State Retirement Pension, half of his net private pension - and then £25-ish is deducted from that as his personal spending (what I refer to as pocket money).

To simplify, say he receives £150 SRP a week, and about £650 ish a month Private Pension, then he'd contribute £150 (SRP) plus £75 (half his weekly private pension), less £25 = £200 per week. If I can help in any way, please do not hesitate to send me a Private Message, and I can give you more detailed info.

If you are self funding, hubby is still entitled to receive both SRP and Attendance Allowance, if he is receipt of this, and if he isn't, you can apply for it, which will help offset some of the costs xxx


Registered User
Jul 16, 2014
North Lincolnshire
Thank you all for your comments and advice. You are all so very kind and helpful.
I have called AZ and am awaiting a call back. I have also spoken twice to the home manager who has assured me that she is working hard to turn the home around and to make it the best in class by training and improved processes. My gut however is telling me that I need to move.
I have been to his old respite home and immediately felt the love. All of the staff on duty wanted to know how he was and how I was and told me how much they missed him! I have also spoken to the wonderful lady that manages that home and as much as she would like to take him, she just doesn't have a bed. However, should one become available she will be in touch. She has even offered to come with me to find another place but I don't feel it would be fair to disrupt Pete again. I won't be fobbed off and won't be taken in by promises to improve. I visit everyday and I don't miss much. As far as I'm concerned he is still my responsibility until proven otherwise. Thank you all once again. Sorry my reply is a bit late, It's the first opportunity I've had.xx