One of my strongest childhood memories is doing my homework at the kitchen table while my mom watched the countdown.
ubik’s cube, quiz shows, sudoku, crosswords, she loved them all.
Today she finds herself at odds with the house she has lived in for more than 40 years, her language is fading rapidly and she cannot remember close family members.
Her memory has been declining for a number of years, but the decline has been significant throughout lockdown.
However, despite the fact that my eight-year-old daughter was able to recognize the signs of dementia earlier this year, my mother has still not received a formal diagnosis.
Last summer a social worker came to the house and carried out an examination – the first step in obtaining this all-important diagnosis, we are told – but inexplicably no further action was taken.
At that time we were informed about long waiting times, so that we only found out when we asked in June that no transfer had been made.
A second examination was then performed and my mother is now on the waiting list for an appointment at the memory clinic.
However, by the end of May, 670 people were waiting for a memory test at their Health Trust in Northern Ireland, with the longest waiting time for an appointment being 442 days. In the meantime, my father’s burden was considerable.
At the age of 75 he is responsible for all aspects of my mother’s care.
It’s no longer safe for her to be left alone for long periods of time, so my dad makes frantic trips to the supermarket – the only break he has from his caring role so he tries to get home as soon as possible.
I live over an hour’s drive away, my brother lives in England so we can only help to a limited extent.
Given what we know about memory clinic wait times, we’ve all but given up on a formal diagnosis.
Instead, I’ve focused on getting support and a care package to give my father a much-needed rest.
I’ve spent many years writing about the broken health and human services, but my experiences over the past few months have been frustrating, terrifying, upsetting, and exhausting.
It can take countless attempts spanning more than two weeks for a social worker to return a call — but with a social worker working in two GP surgeries, delays are inevitable.
They get stressed and hassled when you speak to them and have very little to offer other than to apologize for the lack of service they can offer.
We have been told that care packages for the community are so scarce that it is unlikely that one will be set up for my mother, with one social worker commenting that getting a care package is “like a lottery”.
They offer different strategies on how we can improve our chances – for example, it was suggested that my mother should be hospitalized. The theory goes that the trust, while making a hospital bed, provides more of a care package.
Since my father doesn’t want help with personal hygiene or meals, her case doesn’t seem to be considered a priority.
It seems his mental health and physical well-being are irrelevant.
The approach of leaving caregivers to fend for themselves until they reach breaking point is false economics and in nobody’s best interests.
We have been told that our only hope of getting help for the foreseeable future is if we source and pay for it ourselves.
However, the only private company we contacted failed to get to us as planned, with no explanation – completely shattering our confidence and any notion that they deserve to care for my mother.
The achievement system is just as complicated and the NI Direct website is deplorable.
For example, it is recommended that you contact your local trust for more information, but when I tried this the person I spoke to had never heard of direct payments and I was further told that there was no one in the trust who could help me.
I am sure that my experience is not unique and what is particularly disturbing is that I am familiar, capable and competent with the system but have failed miserably in my efforts to get help.
How many people out there today are struggling, like my father was, with caring for a loved one – prop up the system and save the government untold millions of pounds in the process – with no support whatsoever and no hope of help from the Horizon?
https://www.independent.ie/life/health-wellbeing/health-features/mum-gets-lost-in-her-own-home-but-we-are-still-waiting-for-a-dementia-diagnosis-42006539.html Mom gets lost in her own home… but we’re still waiting for a dementia diagnosis