11. Behavioural Changes

Safeguarding…

What social services don’t understand is that support in terms of fixing things around the house in the South Asian community is often done in an informal manner. I understand that safeguarding is important, but her action meant that I blocked communication with the young man and would not allow him to attend mum’s funeral. Furthermore, not everybody is aware of the services offered by the local council in terms of the Handy Man service.

On March 18th, 2020, social services and I were contacted by mum’s bank following a phone call to them by mum that she wanted to take out a large amount of money and her speech was slurring the bank could not understand precisely what she was saying. Mum had called the ‘young man’ to the apartment as she wanted him to help her to speak to the bank. Her hearing was getting worse, and she had difficulty speaking to people on the phone. When the ‘young man’ spoke to the bank, it triggered the bank to social services and me. Mum had not agreed on signing a financial LPA (Lasting Power of Attorney) so the bank could not reveal exact details, but they were concerned about mum, and as I banked with them too, they called me. I was unaware of the full story until after her death when I applied for probate. Despite informing the carers that the ‘young man’ should not be visiting mum without my presence, he did so.

It was time to re-new the lease of the rental apartment…

Mum was flip flopping about renewing the lease on the apartment for another year and the contract was due in April. She informed me that she did not want to renew and wanted to move somewhere in Ongar near where my parents had first bought their house. I reminded her that Ongar was further away and that it would be difficult for the carers to take care of her and for me to visit her. She had already discussed this with the carers, and they had informed me that if she moved further away they would not be able to attend to her. Mum did not care and stated that she was more than capable of looking after herself and didn’t need anyone to look after her.

The social worker performed the assessment and admitted to me that mum was keen to renew the lease on the apartment. This was a relief as I wasn’t keen on moving her out of there and into somewhere else further away. She then asked which carer was present when the ‘young man’ visited the previous day. Mum only had one day carer during the week and as she was present at that time, the social worker asked why she allowed the ‘young man’ into the apartment when strict instructions had been given not to allow him to visit. Her answer was that my mum instructed her not to tell me. The social worker reprimanded both of us saying that my mother had dementia and that she was like a young child and that this was an issue of safeguarding. I felt this was a contradiction. She insisted that mum was capable of taking her own decisions, but in the same breath said that she was like a young child. Which one was it? She could only be compared to a young child if she was partially lucid or not lucid at all. The social worker left informing me that she would speak to the ‘young man’ and inform him that he was under no circumstances to visit mum. I realised that day, that all was not as it seemed. Mum would confide with the carers and any discussions we had when she was angry or disillusioned with me, she would repeat to the carers which in my opinion is crossing a line.

I left mum’s apartment none the wiser that it would be the last time that I would see her but there were rumours about COVID and many offices were working remotely. Four days (March 23rd, 2020) later a national lockdown was announced where the Prime Minister ordered the country to ‘stay at home’ unless it was considered ‘essential’. I ordered gloves, masks, aprons and hand sanitisers for the carers from Amazon and had them delivered to mum’s apartment and then had letters of consent for both carers should anyone stop them on their journey to mums. The night carer decided to stay over at mums rather than going home so she was there 24 hours a day. If grocery delivery slots were unavailable, she would go to the grocery store to pick up emergency items.

11. Behavioural Changes

Having carers at home gave me peace of mind that Mum was not alone and that there may be less falls. Given that the carers were not medically trained, it is understandable that they would not know how to deal with some of the behavioural changes that Mum was beginning to demonstrate. She was declining slowly at this point but at times she would say things that were inflammatory and alienated the carers and our friends. On two occasions she accused one of the carers of being money motivated and the carer decided to leave. Mum didn’t remember saying this to her and the carer felt too hurt so left within a week. I understood the carer’s point of view, but this was an issue that we wouldn’t have faced had the carer been a trained professional. They would have ignored it and just put it down to mum’s dementia rather than taking it so personally.

Mum also falsely accused another family friend of taking money. He had always helped her so much I was embarrassed by the ludicrous accusation, and he too decided that he could not face mum and never met her again after this issue. I didn’t blame him for not bothering with mum anymore. It’s difficult to swallow when someone accuses you falsely of anything

Towards the latter part of mum’s dementia journey, there were many frustrating issues to deal with. I started doing the grocery shopping and mum would reprimand me for buying unnecessary food saying the fridge/freezer was full. When I would check both would be empty!! A family friend visited her once and mum had given her strict instructions not to bring any food as there was plenty but when she arrived at mum’s the carer informed her that there was no food to be seen. I wondered whether this delusional behaviour was part of the process.

Her carers were wonderful and became part of the family. In fact, after mum’s passing, they paid me a truly heartfelt compliment that they never felt like carers because they were treated like granddaughters of my mother and younger sisters to me. We would eat together and sit talking about various life issues. If they knew I was arriving from Sweden, they would cook for me too. To this day I’m still in touch with one of the carers. She took my mother’s passing very badly and what is worse, had to quarantine in mum’s flat as she had contracted COVID. I don’t know how she managed to stay in the place where she had so many memories of her precious ‘Aiza.’

We needed to raise funds and quickly..

Funding Care Support

The topic of funding is sensitive but needs to be discussed openly and frankly. All care support that my mother received was funded by her and managed/organised by me. In early 2019 it became apparent that funds were running out. We needed to raise sufficient funds and raise them quickly!

My dad had always said that he wanted mum to live comfortably after he passed and had suggested we sell the family house. Initially mum had said she wanted to sell it and then she changed her mind and then changed it back again. However, in February 2019 she agreed that she would sell and move into a small apartment preferably nearby. We both owned it jointly so both signatures were required for the sale. It needed to be done as the cost for care support was exorbitant to say the least.

Looking for an alternative accommodation in London to live in was a nightmare…

I arranged some viewings, but Mum was not happy with anything that she was shown and then flip flopped and said that she would not sell the house. She asked me if I could buy her out which was impossible as I was not earning at the time. She had lived in the house for over 40 years and loved her garden. She eventually agreed and we found an apartment very close to the GP surgery and all was set for the move. The completion happened and the move date was for June 19th, 2019.

At around the same time, my husband was due to have back surgery in Sweden so I needed to make sure that the move happened smoothly and quickly so that I could go back to Sweden as soon as possible. I flew back to Sweden on the 20th as all airports were due to shut down on the 21st for Midsummers and re-open the day before my husband’s operation. The carers were amazingly supportive and helped mum clear out and pack boxes as much as physically possible. I dealt with the issues they could not deal with but during that period they worked day and night to help us get through this tumultuous move. After moving mum to the flat, they helped sort everything out for her so that it felt like a home.

They became like family rather than professionals doing their job. They loved my mum and called her granny ‘Aiza’ and they loved me too. There is an advantage to having such devoted carers who become part of the family as demonstrated above. However, there is also a disadvantage especially when the patient has dementia. When the line between personal versus professional becomes blurry, and it can lead to all kinds of misunderstandings. There needs to be a line, but it is up to the family to decide where that line is. Mum was very open with her financial information with her carers which I didn’t necessarily agree with and as a result, started trusting outsiders.

She was still fairly lucid until early 2020, so wanted to do her own banking. When she had the initial diagnosis, the Alzheimer’s Case Worker had discussed the need to initiate an LPA (Lasting Power of Attorney) for both financial and medical issues, but mum was adamant that she would be able to deal with her own finances and pushed back whenever I brought it up. This continued right up until February 2020 two months before she passed away. I asked her what would happen if she had a stroke the following day and her response was that she would arrange everything the day before having the stroke. Afterall, her carers were being paid directly from her bank account to which I had no access. I gave up at this point and left it to fate!! She believed that she could conduct all her financial affairs despite having a hearing problem and slurring at times.

My husband and I re-located to London from Sweden…

By the time mum moved into the flat, my husband and I had already decided that we needed to move back to London to be close to her. I had a flat in Canary Wharf so we could move back in there rather than moving in with mum. We started sorting out our affairs in Sweden, closing our business, selling and giving away stuff and making arrangements for our goods to be shipped back to the UK. We finally arrived in London on September 2, 2019.

Mum became more demanding of my time…

After arriving in the UK, I noticed that mum’s expectations changed, and she grew more demanding. Many a time if she knew I was out visiting my sister-in-law, she would call me up and say that there was some emergency in her flat and that I needed to go and sort it out. The carer would say that nothing was wrong but mum insisted and I would jump in my car and attend to her needs. By the time I arrived mum would have forgotten why she called me in the first place. It was as if she didn’t like me being out with my husband somewhere and wanted me to be with her.

The child becomes father of the man…/A role reversal between mum and I…

I made it a point to spend quality time with her at least 3-4 times a week until COVID. We would knit together and play games. I fondly remember her teaching me how to knit when I was a teenager and whenever I made a mistake, I would hand it back to her and ask her to ‘fix it’. During the last few weeks of our interactions when we knitted together, the roles changed, and she would hand over her knitting to me and ask me to ‘fix it.’

I want it now!!

I remember as a child how patient my mother was. This was probably due to her role as my sister’s primary carer. I noticed however, that as her dementia progressed so did her impatience. It was totally out of character. When she wanted something, she wanted it now. Shortly after she moved to the flat, she wanted her curtains fixed in her lounge and I had said that I would arrange it with a local curtain shop to come and do it for it. She could not wait, and her constant badgering of the carer resulted in the carer calling one of relatives (a young man) to visit mum and fix it for her.

However, the ramifications of this interaction were such that this young man would attend to everything she wanted. She would discuss everything with him; her financial issues, what she wanted with her final burial wishes etc. She felt that I would not have her buried in the right place as per her wishes. On one occasion she called the bank and because her speech had started slurring the bank could not understand what she was saying and misheard what she wanted to take out of her account. She put the young man on the phone to confirm the details. This triggered an alert whereby the bank called me and the social worker who then conveyed that this young man should not be visiting my mother without my presence. She asked about the details of the curtains being fixed and said that they should have been fixed through the approved local council handy man and informed the young man that if he approached my mother again there would be serious consequences and reprimanded me for allowing him to visit. I had no idea he was visiting as my mother told the carers not to say anything to me if I asked.

Following the death of my mother, I asked the bank to relay the contents of the tapes from that particular day when my mother wanted to take money out of the account. The social worker had mis heard the amount and added an additional zero to it. I have not heard from the social worker since March 21st, 2020, when she left my mother’s apartment despite informing her of mum’s passing and the fact that she made a mistake with the amount and wrongly accused the young man.