I wrote about this in a previous blog in August 2018, which resulted in nurse funding for my Mum. This time around the care home was hopeful that Mum might be approved for the full continuing care whereby the NHS would pick up 100% of my Mum’s care costs.
The individual is reviewed and assessed against various care domains and in order to be approved Mum would have to score as one ‘severe’ and four ‘high’.
Mum scored as one ‘severe’ and three ‘high’ for nutrition, cognition, mobility and communication. Sometimes they account for a number of ‘moderate’ scores to make up for the fourth ‘high’ however in this instance they did not and as such Mum’s case was not approved for continuing care. The care home nurse informed me that in a lot of dementia cases the behaviour domain score is high whereby behaviour can be challenging and potentially cause a risk to self, others or property. My Mum is so gentle and compliant that she scores low in this domain.
From a financial perspective it is no longer such an impact for me given the majority of Mum’s costs are now covered by the care home and council, however I can appreciate why the care home would be keen for Mum’s case to be approved.
I feel blessed that she scores low in the behaviour domain and is so gentle as it makes spending time with her an absolute pleasure which outweighs a higher score in order to pass the NHS assessment any day!
After 5 years of living on the dementia floor my Mum has recently moved up to the nursing floor.
April 2022 first visit without me having to wear a mask – lots of smiles!
Despite having a good appetite, she has lost a lot of weight over the past couple of years and has been under special supervision with regards weight maintenance. She is hovering between 32kg and 34kg. She deteriorated quite quickly from a mobility perspective.
She is no longer weight bearing so a harness and sling are required to move her as it is more gentle therefore preventing potential bruising. She has to be repositioned by a carer every 3 hours whilst sleeping and regularly during waking hours as well.
Her increased needs require the specialist nursing care and I can already see her thriving under their supervision.
I’m thankful that she has her appetite and still getting enjoyment from her meals (even if it does take an age to feed her!). Whenever I visit she always greets me with her lovely smile and over the past few months she has been more alert and even tries to engage in incoherent conversation.
So many people tell me I am such a good daughter. My response? It’s easy to be a good daughter when you have such a caring mother who always wants the best for you.
Even though she can’t express herself anymore I know she still wants the best for me and Mother’s Day is a time to reflect on this and feel grateful.
Perseverance is key. My boyfriend and I spent months drafting correspondence back and forth with the Council and the key stakeholders. It was almost like taking on a second job. After logging off from the day job we would spend evenings carefully drafting the next instalment in the saga.
Clive was constantly reading statue, case law and regulations. I believe the Council rely on families giving in to their convoluted policy and process, however it was apparent when they recognised they were dealing with someone not willing to give in so easily. Their returned correspondence style notably changed in that it was likely being reviewed by their internal legal department.
The Council have block beds that they reserve in care homes. The fees for the care home they wished to move my Mum to are £1,400 a week (in excess of what my Mum’s fees were at £1,200 a week). The block bed that the Council pay was supposedly £400 a week. So as you can imagine most families would be unable to pay a top up towards the fees when the gap is so vast, especially if like my Mum, the individual’s income i.e. pension contributions are minimal and of the state pension variety.
I researched care home fees and obviously some counties are more expensive than others. That said the average across the country was in excess of £850 a week and given the Council my Mum resides in would be one of the more expensive, I could not fathom how the Council could operate with block beds at £400 a week. When I challenged them on this point they eventually responded explaining that as a result of a recent review their contribution towards the fees were increasing from £400 to £850 a week.
What an interesting coincidence… but one that I was delighted to hear about. With the care home reducing their fees and the Council increasing the contribution, I did as a good will gesture agree to a minimal £25 a week top up (although we made it clear to the Council it was a good will gesture and no contribution should be requested under law in these circumstances).
The agreement that I have arranged with the Council is in accordance with case law rather than Council policy in that I pay the Council rather than the care home directly. This ensures that as my Mum’s needs increase and the costs increase I won’t have to enter into another round of unpleasantness and negotiations again.
As you can tell I totally lost my trust with the Council. All I wanted was for my Mum to be treated fairly. I believe the very least the Council could do was organise a best interest meeting with the relevant stakeholders i.e. me (as her power of attorney), her GP, the Council and the Care Home to discuss what the appropriate next steps should be in my Mums best interests especially during these unprecedented pandemic times. This is something I constantly asked for but which the Council never organised.
It should also be noted that the Council wanted to move my Mum to a care home that had previously been deemed unsafe and had fairly recent headlines in the newspapers detailing serious abuse and neglect of residents. In addition when we visited this care home we asked detailed questions and the manager informed us of staff shortages which is another obvious concern. As I have highlighted in past blogs you should not underestimate the importance of doing your homework. Note that all care homes by law have to provide detailed assessments and inspection reports on their website.
To be fair to the Council, the complaints department has been very helpful and quick to respond to my grievances. I had suggested I would also request a Data Subject Access Request but decided against this when the Council started taking my concerns and complaints seriously.
The positives from this posting (aside from the fact my Mum gets to remain in her care home which I know she loves and where she receives wonderful care), is that so many people I spoke to from the free legal advisors to the MP’s office (all of whom had never met Mum or knew anything about her) really cared about her case and genuinely wanted to help. They followed up with me regularly and it was nice to witness the good in society.
I hope my post will help others about to embark on a similar journey with the Council. My advice is to persevere no matter how unpleasant it gets. Like me it may take a good 14+ months but you will get there in the end!
In the UK the sale of your assets (which in my Mum’s case was her property) goes towards the funding of the care home. Once you reach a £23,000 threshold the Council is responsible for managing the funding of the care from then onwards.
The recommendation is to get in touch with the council approximately 3 months prior to reaching the threshold amount. Given the pandemic I decided to get in touch far earlier as I assumed it would take a bit longer for the process to complete during these unprecedented times. Little did I know that when I made the phone call to the Council in September 2020 I was about to embark upon what can only be described as 14 months of the most unpleasant of experiences.
Initially you are asked to provide all the documentary evidence and financials such as bank account and pension statements.
As you can appreciate my preference was for my Mum to remain within her care home. After all it was the only environment she had known for five years.
Based on the financials and a health assessment the Council provide a sum they are willing to contribute. Let’s just say their contribution was way off the care home fee and as such they were expecting me to top up an eye watering £600 a week difference!
What then unfolds is a ridiculous negotiation game play between the Council and the care home and you are the pawn caught in the middle of it all.
In my case whilst the care home kindly came down in price the Council was not willing to budge. They informed me that they had found an alternative care home to move my Mum to and recommended I check it out. I did visit this alternative care home but due to Covid-19 I was unable to enter the home. I did however meet with the manager of the home who was surprised that I would even consider moving my Mum (with such an advanced dementia condition) from her home of five years as such a move would be detrimental to health. I was encouraged to persevere with the Council.
I was not impressed when the Council called me on a Monday to say that if I was not able to top up the difference in fees, they would move my Mum to an alternative care home by the Thursday. I sprung into action immediately contacting the safeguarding team. I was adamant that such a threat was not in my Mums best interests.
I proceeded to contact numerous stakeholders. Whilst I appreciate all have to remain independent and objective, I was encouraged that all those external to the Council agreed moving my Mum to an alternative care home were not in her best interests and detrimental to her health. Stakeholders I escalated to included:
– The care home Director
– My Mum’s doctor
– My Mum’s MP
– I managed to obtain free legal advice from a charity and from my employer Assistance Program
– The Council’s Leader and the Council’s Head of Health and Adult Social Care
– The complaints department at the Council
The Council should ideally perform the care assessment on my Mum in person however due to COVID lockdown they chose not to visit. As such the assessment was paperwork based only. They take their decision on how much to support the case based on a risk rating. The risk ratings are 9 in total and my Mum was rated as 7. The Council informed me that the only way they would support my Mum remaining at her care home was if she rated as 8 i.e. permanently bed bound or 9 i.e. 6 months or less to live.
They argued that because my Mum was mobile and I was unable to top up the care fee the only choice was for her to be moved to another care home. If they had visited my Mum they would have seen that my Mum had suffered greatly following testing positive for COVID. She lost so much weight that she often required 2 carers to support her mobility. She was so thin that she was put on a high risk list whereby her meals had to be carefully monitored as she was boarder line malnourished. Despite this, her GP and the care home manager opinions that my Mum was not fit for a move, the council continued to pressure me.
I had to remind the Council of the new covid guidance which they seemed to ignore. To think they thought it was reasonable to move my Mum in her condition and allow her to be quarantined in a room on her own in a new unfamiliar environment for 2 weeks!!
For the last few weeks of visiting my Mum I have been allowed to hold her hand for the first time in a year. I am still wearing gloves and mask but it really is a wonderful next step in this Covid journey.
You can’t underestimate the importance of touch, especially when having spent 12 months communicating with someone who is incoherent at a distance through a phone screen or room divider screen and the additional barrier of wearing a mask.
I am not sure if my Mum recognises me although I like to think she knows I am special to her. So being able to hold her hand again adds a strong sense of connection which I am convinced my Mum can feel too.
Second lockdown has resulted in reverting back to video calls with my Mum. Never easy given her confusion and incoherence. At times she tends to look everywhere but the screen.
Introducing George – mischievous George, who as soon as he joins the call will make her smile. I cannot bring George to her care home but video calls allow for her to meet him. If she could speak she would say ‘hello puss’.
The calls don’t last long, but they are another example of living in the moment, where I can see in her eyes that he has brought out the mischievousness in her too!
Vaccine day has arrived for my Mum. I provided consent as soon as I was asked. All care home residents should have been vaccinated across the UK by end of January.
Hopefully one step closer to being able to see more of my Mum and enjoying more living in the moments with her. How wonderful to have that to look forward to.
As I reflect back on the last six months I noticed I was getting more and more frustrated at not being able to see more of my Mum and not being able to hold her hand or take her for a walk. I am sure many of us around the world have similar thoughts that Covid has robbed us of so much.
That said, as I continue to try and live in the moment I appreciate the time I have had with Mum albeit brief and distanced. I believe I have seen my Mum half as much as I had anticipated but better than not being able to see her at all.
In addition I am grateful for my Mum slowly recovering from testing positive to Covid. She continues to struggle with tiredness and has lost too much weight but I hope with time her appetite will improve. The long term effects do concern me of course, especially as she becomes more and more fragile but I see that she is well cared for and continues to be happy in her own world.
Roll on the vaccine which I expect Mum to receive imminently. I’m sure there will be a long wait for me. I just hope being able to hold my Mum’s hand again won’t take as long and hope we can find a way to meet safely without a screen dividing us.
Here is to hoping for a happier and healthier 2021.
After 3 months separation, the care home has opened to visitors under strict guidance. I have had a few visits now and it has been lovely to be able to see my Mum in person.
The visit lasts half an hour. I have my temperature checked, sprayed all over with disinfectant and provided gloves and mask to wear. I also have to read and sign a disclosure confirming I am not experiencing any of the Covid-19 symptoms amongst other things.
I’m not convinced that Mum recognises me especially wearing a mask but she seems comfortable in my company. It is all rather strange as I can’t give her a hug or hold her hand as we need to stick to the social distance rules. As conversation is difficult, I have been playing her the traditional Irish music that she enjoys. I hope it won’t be too long before I can hold her hand and take her for a walk around the garden.
Living In The Moment With Dementia 