One participant at Maidenhead Synagogue’s forum for full-time carers of partners with Alzheimer’s or dementia reflected that life with her 68-year-old husband was “like having a toddler in the house again”.

To which another added: “Yes, but at least with toddlers you know they will grow up, whereas with our partners it will only get worse.” A third confided: “I do it as best I can but it’s not what I signed up for when I got married.”

Rabbi Jonathan Romain explained at the outset that he had organised the meeting to enable people to share experiences, safe in the knowledge that those around them would fully appreciate the physical and emotional toll of caring for a loved one with diminished mental capacity. “Exhaustion” was a word commonly used.

It was also an opportunity to share information, including about the support that’s available from local or national charities, benefits that can be claimed, and tips for how carers can maintain their own well-being.

“It is not the end of your life but it is the end of your life as you knew it,” Rabbi Romain acknowledged. “When I first became a rabbi, the main fear everyone had was developing cancer. But we have learned to live with that. Now what terrifies congregants most is Alzheimer’s, which can not only destroy a once-intelligent person but shatter their relationship with partners or children.”

Issues raised included how the social seclusion of Covid had exacerbated the condition of those with Alzheimer’s, how carers were “always on duty” and their feelings of guilt at being a “jailer”, locking doors and generally limiting their partner’s movements for their own safety.
Among the more positive aspects were the power of music and the use of photographs to spark memories and stimulate conversations.

At the end of the meeting, two documents drawn up by Maidenhead member Irene Blaston were distributed, one listing tips for congregants to support the carers among their number.
The other was a list of benefits and discounts available to carers, many of which were news to those present.