Social worker wants my mum in care home. Do I have any say in the matter?

[Waverleyone]

I hope you don't mind me asking one crucial question, Waverleyone.

Given the poor track record of your mum's carers when it comes to them dealing with incontinence, what solution do you see to this in the longer term if your mother remains at home (in your home, presumably)?

I have encountered a similar reluctance (mentioned elsewhere) on the part of carers to adequately clean the client and their surroundings when soiling has taken place, but the solution I have found is for there to always be a family member working with the carer when any personal care is being performed.

It's a solution that works very well for us, as far as getting the job done satisfactorily, but it does require either me or my wife or another family member to do the dirty part of the job, i.e. the wiping, cleaning, and disposal of waste after the job is done. We happily do this at every pad change, and in our case we do between six and eight pad changes a day on my two parents.

In order to ensure that your mother's hygiene is assured, would you and other family members be prepared to roll your sleeves up and do what you find the carers reluctant to do?

 

[Hermann]

Why it is ridiculous to be present for carers…. Well because it is their job to do the physical care they are paid for.

because the carers are being paid to do a job.

When it comes to care, I've always been concerned with the reality on the ground rather than with the theory. If paid carers all performed the personal hygiene aspects of their job satisfactorily, then of course it would be unnecessary, and arguably ridiculous, for family members to always be present to assist the carers to ensure the job gets done properly.

Sadly, though, the fact that someone is being paid to do a particular job is no guarantee of the standard to which they will do it, and in the case of personal care on vulnerable bed-bound adults, where surely no chances should be taken, it helps to ensure the long term wellbeing of the patient if a family member can be present to lead or assist. I personally know of two cases (friends of the family for many decades) where the care of a bed-bound person was left by the family largely in the hands of visiting carers, and, sadly, both people developed pressure sores that ended their lives. Both Waverleyone and I have also testified to our own disappointing experience of some carers' standards.

I think that your situation...is unusual...My husband and I supported an elderly friend for over three years. My husband was her attorney for property and financial affairs. Should I have attended every carer visit?

I did hope it would be sufficiently clear (evidently it wasn't) from my whole line of approach to Waverleyone that I was acknowledging the fact that always being present to assist at carer visits is not possible for everyone and might not be achievable for him and his family. It was precisely in order to obtain clarity from him on this matter that I wrote what I did in post #33:

It's a solution that works very well for us...but it does require either me or my wife or another family member to do the dirty part of the job, i.e. the wiping, cleaning, and disposal of waste after the job is done. In order to ensure that your mother's hygiene is assured, would you and other family members be prepared to roll your sleeves up and do what you find the carers reluctant to do?

 

[Waverleyone]

I admire your commitment and certainly hope I can step up to the challenge. I wouldn’t expect my kids or husband to help with that, but hopefully between me and the carers - I’m present at every care visit now and there have been no more incidents so far. Tbh I had been considering care work for a while - that would be a career change for me. Some say you get used to that part, I won’t know til I’ve been involved a bit longer. Do you ever find it too much?

 

[Hermann]

Very sorry to get your gender wrong, Waverleyone!

 

[Hermann]

Do you ever find it too much?

There have been been some very dark periods, and it's been life-changing in every sense. What's more, it's not over yet, so anything can happen if circumstances take a different turn.

All I can say about the present is that I seem to have reached a sustainable equilibrium, where pity and compassion have moved in to displace most if not all of the frustration and desperation the restrictive nature of the whole business has placed on my life. Sadly, the huge amount of work involved never goes away, and in fact seems to increase, but the good thing is you do get better at doing that work the more you do it.

Do keep us posted on how things work out with your mum. I do hope you manage to keep her at home and that doing so doesn't impact your own health and happiness too much.

 

[Waverleyone]

When it comes to care, I've always been concerned with the reality on the ground rather than with the theory. If paid carers all performed the personal hygiene aspects of their job satisfactorily, then of course it would be unnecessary, and arguably ridiculous, for family members to always be present to assist the carers to ensure the job gets done properly.

Sadly, though, the fact that someone is being paid to do a particular job is no guarantee of the standard to which they will do it, and in the case of personal care on vulnerable bed-bound adults, where surely no chances should be taken, it helps to ensure the long term wellbeing of the patient if a family member can be present to lead or assist. I personally know of two cases (friends of the family for many decades) where the care of a bed-bound person was left by the family largely in the hands of visiting carers, and, sadly, both people developed pressure sores that ended their lives. Both Waverleyone and I have also testified to our own disappointing experience of some carers' standards.


I did hope it would be sufficiently clear (evidently it wasn't) from my whole line of approach to Waverleyone that I was acknowledging the fact that always being present to assist at carer visits is not possible for everyone and might not be achievable for him and his family. It was precisely in order to obtain clarity from him on this matter that I wrote what I did in post #33:

It's a solution that works very well for us...but it does require either me or my wife or another family member to do the dirty part of the job, i.e. the wiping, cleaning, and disposal of waste after the job is done. In order to ensure that your mother's hygiene is assured, would you and other family members be prepared to roll your sleeves up and do what you find the carers reluctant to do?

I totally understand that some carers find it difficult - maybe they will get used to it in time, and if not they should consider a career change perhaps.

What I don’t understand is the callous way the system approached this situation. My husband has been worried I was on the verge of a nervous breakdown - it’s been a genuinely traumatic time. 2 of my siblings also have poa alongside me and almost fell into this trap - I do believe it was a deliberate trap.

However the time to fight any battles on that score will have to wait - I don’t want to antagonise the situation further and need to do whatever it takes so ensure Mums best interests are met as best as possible.

Someone asked how social services were involved. It’s social services who oversee the care packages. So care team report any concerns upward to them.

 

[Waverleyone]

There have been been some very dark periods, and it's been life-changing in every sense. What's more, it's not over yet, so anything can happen if circumstances take a different turn.

All I can say about the present is that I seem to have reached a sustainable equilibrium, where pity and compassion have moved in to displace most if not all of the frustration and desperation the restrictive nature of the whole business has placed on my life. Sadly, the huge amount of work involved never goes away, and in fact seems to increase, but the good thing is you do get better at doing that work the more you do it.

Do keep us posted on how things work out with your mum. I do hope you manage to keep her at home and that doing so doesn't impact your own health and happiness too much.

Thanks Hermann

 

[Waverleyone]

Very sorry to get your gender wrong, Waverleyone!

🤣I didn’t spot that you had!

 

[Scarlet Lady]

Am I the only one who is thinking about our original poster @CraigUK ? Who had his thread hijacked and from whom we haven’t heard since September? I hope he got some value from the opinions and advice offered back then before the thread became about someone else.

 

[SAP]

Fortunately in practice my mum has been very well cared for both in her own home and then in 2 care homes and a hospital. Regular skin inspections have been done as well as proper professional care. I think at times social services are over a barrel when providing care using private companies. Family carers have little or no time to be constantly complaining about home visit and do get regularly fobed off because there is such a shortage of staff. @Hermann you are doing this because you want the best for your parents as do we all it’s just so maddening that paid for care cannot provide the quality that people not only need but deserve.

 

[Chizz]

Hi northumbriank_k - I appreciate that my post has hit a raw nerve for many - I was at the end of my tether when I posted on the forum yesterday and could have worded it better, so apologies to whoever I’ve offended.

I can’t go into too much detail and may have already said too much. The system doesn’t always work in the best interests of the individual.

Given my recent experience, I don’t think I’d be able to trust any future respite offer. I’m genuinely trying to act in mum’s best interests and a care home may well end up being the only option - my issue is specifically in regard to people being taken away against their will prematurely - and by prematurely I mean the risks are not great enough yet to justify removal from her own house. Again I can’t go into detail as I’d be betraying confidences from within the system. I have the utmost admiration for the carers who are in the job for the right reasons.

Our GP is backing us on this as he’s seen it many times himself (the premature removal).

Honestly at my wits end worrying that mum might wander in the meantime before I have things in place - and that the decision will be taken out of my hands. I shouldn’t be living under duress like this - spending several hours every day at mum’s and trying to sort my own house out at the same time, and worrying every time I leave that something might happen. She’s classed as medium risk, not high risk, but my worry is that one incident is all social services are looking for.

One of the things social services said to me was that because she’s a smoker, I’m being irresponsible incase she sets herself or the house alight. There is no evidence to suggest this is an imminent risk. I feel bullied and harassed. I could confiscate her cigarettes but what if that triggered her to leave the house to buy some? Being a lifelong smoker doesn’t seem to me to be a justifiable reason to be locked up. I’m reducing and eliminating risks wherever I can and thought the system was there to help us. It seems I was wrong. 2 weeks was insufficient time to allow mum to adjust to care package.

My post re home care funding was based on the fact that that if the op doesn’t want to put parent in a home, the other option is to self fund extra care at home privately.

Hi @Waverleyone
I don't think anybody would doubt that you are doing and will do the best you can for your mum.
I hope it all works out for both of you as you wish it to.
I understand your distrust of the "system".
Best wishes

 

[Alzheimer's Society]

Hi everyone,

This is to let you all know that we have made the decision to close this thread, as it has run its course.

If you have any questions, please contact us at dementiasupportforum@alzheimers.org.uk

Best wishes,

The Dementia Support Forum Team