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Hello. - Carers UK Forum

Hello.

Tell us a bit about yourself here.
I,m Gary...my mother who is 89 and recently had a major stroke and has been just discharged home after making a great recovery. Initially she wasn't aware for 3weeks the started to recover and has made a great improvement. Me and my partner have rallied around her ..supporting , encouraging at times it's been tough love.
Her fear was ending up in a home ..so to get her to where she wants to be has been a feat.of grit determination from her and support from us.
She is home with an initial package set up for 6 weeks..but alas I feel this may be on going. She has two other heath issues one her diabetes will need continued support.
I am a nurse myself (working nearly full time)...and understand her needs for continued good diet. I have assessed risk at home ..making the environment safe as I can but not taking away the look of her home. We have been organising food as she is not allowed to cook anything due to the fact she needs assistance to move and be washed,helped and prepared for bed by the care company involved.
I am trying to maintain her home ,washing ,ironing ...give support reassurance. But in truth I am struggling and am emotionally exhausted..
The last 2 months have been very upsetting stressful frustrating ...my partner had been fantastic..but he is also caring for his 93yr old mum. I feel such guilt that I am not doing enough..but feel I have put in place as much as I can to keep her at home. We are going on a Holiday booked way before this stroke happened...we need it so much..to rebound ourselves as well.as relax and be able to come home fresh..to organise more permanent care etc. But I fell guilty in the fact I'm leaving her in the hands of the care company and that o will have to rely on them to maintain her basic needs and health. What I have encountered so far with this company does not instil me with a lot of faith. It may be as a nurse I have high standards. I understand their constraints and time issues...and I am not being ungrateful but I worried about what we may come home too.
I apologise for rambling on ...but just so worried, tired stressed and feel guilty that we are going away..I feel at a loss.
Hi Gary,

Mum has had a "life changing moment" and we can only adapt to it. Dump the guilt and be proud of what you are doing, not guilty about what you cannot.
The best thing you can do is to see your role as Care Organiser/Manager.


There are a number of ways to make sure mum is as safe and happy as she can be at home. If you could give brief answers to the following questions, it will help us give you the best advice we can.

Does she have a Lifeline alarm pendant?
Does she have over £23,000 in savings? (Yes/No)
Do you have Power of Attorney?
Is she claiming Attendance Allowance?
Do you have any brothers and sisters?
Does she own, or rent, her home?
Hi Gary,

It does sound like there will be ongoing problems and if you are booked to go away on holiday within this six-week period I think it is the best time. Even if you are not 100% happy with the care company, they have more responsibility within the six weeks than may be the case in future. It sounds as if you really need a break and you will need all your strength to sort things out in future.
When you say you have sorted out food, I hope that is something the care company can be trusted to handle (our carers were not allowed to reheat home-cooked food for health and safety reasons, but in your case I expect that is more of a long-term future problem than in the six weeks after hospital). You do refer to the importance of a good diet, but that may not be easy to maintain if there are so many other problems.
Perhaps you could be more specific about your worries and we could help more with advice based on our own experience. It would certainly be good if someone else could liaise with the care company while you are away. I don't know whether there are organisations that could help there. I'm just speculating.
I take it the six-week package is the 'free' one that your mum is entitled to post-hospital. But after that, is she going to be self-funding (ie, having £23,500 in 'cash')(not the value of the house/flat if she owns it)? If so, you are entirely free to engage whatever care company you want - you are/she is 'the customer' and you can select who you want (from what is available of course - not always that much, sigh) (as you know, demand WAY outstrips supply, and costs are inherently high).

if she isn't self-funding, but reliant on carers via SS, then you have less 'choice' in the matter, other than stipulating 'needs' etc.

As for your holiday, definitely take it! In the future, one option for holidays might be for your mum to have a 'holiday' herself, ie, respite care in a care home, so you reassured she is being well looked after 24x7 while you and your partner 'recharge' on holiday (What happens to your partner's mum while you two are away?)

Care homes CAN be 'lovely'. My MIL with dementia was in an absolutely lovely one (till her mental state deteriorated beyond their capability, and she had to move to one with a secure unit). It was like a 'hotel for OAPs' with lovely food, company, views over the countryside and a daily programme of entertainment. And the mother of a family member who, like yours, was hospitalised, had an (NHS-paid) week in a private care home that was, again, absolutely lovely - she really enjoyed being 'waited on hand and foot' (and then enjoyed coming back home again after her 'holiday' etc).

So long as your mum knows she is 'coming home again' she should not object, especially if it means her son and his partner can have THEIR holiday with 'peace of mind'.

As for guilt, well the word we use here on the form is 'sad'. We do not need to feel 'guilty' for 'not doing more' (because we are already doing all that CAN be done in practical terms), but simply 'sad' that our parents' health has declined, and that, after all, is a direct result of their great age. Until she was 89 my MIL was 'hale and hearty'. Had she died then (eg, fatal stroke), everyone would have said what a 'wonder' she was! But she didn't die, her physical body remained strong, but her mind started to go....her dementia is truly simply the result of her 'extreme old age'. It is, sadly, the price she paid for living that long. It's hard to accept, but we must. Infirmity is the 'price' for extreme old age. The alternative is not to make it to extreme old age at all.
Hi Gary
Yes you have done good! Be proud!

But also be aware this life changing event means many things won't be as before . Families (espeically those with nurses in) always have higher standards than any agency or care home does. That's not say either side is wrong, they just have different aims. As long as the Carers keep Mum fed, clean, warm and safe that's 'good enough'. For you to retain your sanity you will need to adopt 'good enough' in some of the things you for her too, there just won't be time , or the need, for anything higher.

For example my Mum (now nearly 96) used to be immaculately dressed, now buttons are awry, cardies don't match and there's often spilled food on her front. It breaks our hearts, but she doesn't notice, it doesn't matter to her. Likewise nutrition goes out the window. She can no longer manage 'al dent' vegetables, most fruit, decent meat or indeed much variety. She is happy with fish and soft foods, in very small amounts. She simply can't manage more. It is pointless us even making the effort to cook tasty and nutritious, it just gets pushed to one side.

If anything I'd suggest you concentrate on doing the things others won't, sitting holding her hand, chatting about the past, finances.

Try too, not to make promises such as "we will always keep you at home" as her needs may increase to need residential at some point. You already feel unneccessary guilt, so don't make promises that may be broken. Better to promise "we will ensure you get the care you need and to always love you"

The last couple of months have been very stressful and it will take time for you all to adjust to the 'new normal'. Go on your holiday, come back and book the next one. Regular breaks for you will be important.

Ditch the guilt

Kr
MrsA