Two weeks ago the Free Press reported on the story of Home Farm nursing home resident Sylvia Ladlow, and her daughter Diane Smith’s concerns about the mental and emotional toll of continued restrictions on family visits.
As a way of being near his wife throughout the pandemic Sylvia’s husband and partner of almost 30 years, Stefan Davies, had taken a part-time job at the Isle of Skye nursing home.
However, when Covid-19 struck the 73-year-old was to contract the virus, while his wife was one of only four residents to test negative.
Here, having recovered from what he described as “mostly mild” symptoms, Stefan tells his story of caring for a dementia patient, and his wish to now take his wife home….
A decision of regret
“My wife Sylvia, who I have been married to for 23 years (and together for five years before that) has been resident at Home Farm since December 2017.
“She had been developing Alzheimer’s for several years and I had been looking after her with increasing help from Crossroads, friends and others.
“I made the decision for her to go to the nursing home when the emotional demands on me became so great that I knew I would become physically ill.
“I was unable to get support in the evenings when I most needed to rest.
“I have regretted my decision ever since – or, more accurately, I have regretted the way things worked out in practice.
“I had no idea of the devastating effect that our being separated would have on both my and Sylvia’s mental and emotional health.
“I had hoped for a relatively gradual transition from our home to the nursing home, with some coming and going (we live very near to the nursing home), not an absolutely sudden change and a complete disruption of her life as she had known it.
“Although I do not blame the nursing home, social workers, community psychiatric nurses, or anyone else, this is what I felt was happening.
“Very few people initially want to go and live in a care home. To some extent I blame myself for not being assertive enough in protecting Sylvia.
“I felt under pressure to see less of her; phrases like ‘making a break’ were used, showing a lack of understanding of our relationship and our intense emotional dependence on each other.
“Whatever you think of this kind of relationship or attachment, it is not something to be ‘broken’.
“As a result of the separation of living-places both Sylvia and I suffered from extreme disturbance of sleep: which disappeared on the occasional nights later on when Sylvia came home and slept in her own bed.
“But generally she could not understand why she was living in a different place (Home Farm) and why I was not there all the time; she would ask if I still loved her and would be convinced I had someone else.
“She was also terribly afraid of losing her identity.
“As for me, I became prone to intense anxiety, panics, overwhelming and virtually suicidal feelings of loss and loneliness.
“My parents had died not long before and I had no other close relatives (Sylvia has children and grandchildren).
“So in fact I came to spend more and more time every day at Home Farm with Sylvia; I would also take her out, and about once a week we would go home and have a meal together.
“And I realised that a ‘person with dementia’ should not be seen just as someone with an incurable or life-limiting condition but – like anyone else – as a person who is still going through their own unique psychological processes and can be helped, emotionally and spiritually.
The Covid Outbreak
“The day that the Home closed its doors to family and relatives (13th March) I immediately applied to work there.
“Although my first reaction was for Sylvia to come home, I accepted for the moment the general consensus that Home Farm was a safe place for her.
“I had always enjoyed doing voluntary work there, mainly related to music and singing, and I liked the social interaction with the other residents as well as Sylvia.
“Most importantly for me, it was the only way I would get to see her.
“Following three weeks working as a housekeeeper at Home Farm I contracted the Covid virus.
“On recovering and testing negative I phoned and arranged a time to come back to work on Wednesday 13th May.
“The correct use of PPE was a steep learning curve for me and I had only incidental guidance during my shift rather than organised instruction.
“I assumed this to be down to the evident sense of crisis at the Home. I was phoned by one of the social workers later in the day to tell me that the NHS would be involved in managing the Home from that evening onwards.
“The following day I was asked not to come in, possibly until the manager had returned and was able to discuss things with me.
“However, it would seem likely that the home is now following to the letter the rule that over-seventies (which I am) should not be exposed to this virus.
“During all this time Sylvia has been one of the very few residents who has tested negative for the virus.
“It is possible that a very serious illness which she survived in December was in fact the coronavirus and that she has some degree of immunity.
“But in terms of keeping her safe, we cannot rely on this: it is a possibility, but is unproven, as our knowledge of Covid is still very limited.
Hard to feel confidence in her safety
“Sylvia’s attorneys – myself and Diane Smith, her eldest daughter (who is also activities organiser for Alzheimers Scotland in Skye and Lochalsh) – have to decide what is in Sylvia’s best interests.
“It has been disturbing to see Sylvia sitting in a small room getting very little exercise, with most of her familiar dolls, soft animals, cushions and blankets, removed because of infection control, and nothing happening except visits for toileting, washing, dressing and feeding from staff members, some of whom she knows, others less so, and all in protective gear.
“We have some video communication, but this goes nowhere towards fulfilling Sylvia’s and my needs to be together, though it helps a little for Sylvia and Diane, who have not been with each other since the lockdown (it does seem likely that we may soon be able to talk to each other through a window at the Home).
“We believe and hope that the situation in Home Farm is improving since the NHS moved in.
“But in view of what has happened it would be complacent to feel confidence in Sylvia’s safety.
“In the present situation we have to assume that Sylvia is not only still physically at risk from Covid infection, but also – and even more worryingly – mentally at risk, in danger of feeling abandoned and losing hope.
Care package for returning home
“Both Sylvia and myself have been through a lot of changes in the time that she has been living at Home Farm, but one thing has got stronger, which is the desire to be together, and for Sylvia to be back in her own home.
“Although I am personally fully aware of Sylvia’s needs and how they have changed over the last two and a half years,returning home will still only be possible with the support of a care package including possibly someone living in, either full- or part-time.
“Sylvia is a lovely, spiritually-minded person.
“She has been a teacher, a singer, and is a wife, a mother and grandmother.
“Although she has lost all sorts of abilities and lots of memory, and a lot of the memories she has are confused, to me the essence of her shines as clearly as ever.
“I don’t know how near or far she is from the end of her life; so far she has proved extremely resilient.
“I just want her to be happy in the rest of her life and to be surrounded with her family, and not to be left by herself in a small room.”