Story with Landscape header

Mike and his partner Tom have been together for 43 years, since they were both 19. Tom joined the Merchant Navy,
leaving Glasgow to see the world, and it was when he came to London that he and Mike met.

In 2008 Tom started having some symptoms of minor cognitive impairment.

“I started noticing small things,” said Mike. “I noticed, for example, that we had accumulated 23 bottles of hand wash under the sink, Tom having forgotten that he’d already got some. Or I’d come home at half past five in the afternoon and he would just be finishing his lunch. But it takes a lot from noticing these small things to deciding it’s a medical situation that needs to be attended to.”

Because Tom is HIV positive, he was already having cognitive checks each year with the HIV clinic.

“They tested his abilities and we were told he was declining, but he didn’t get a formal diagnosis. In 2016, we pushed for a referral to a consultant, and he determined it was HIV-associated neurological disease (HAND).

The diagnosis has had a lasting and significant impact for the couple.

“You’ve got to see it as two things. His world is changing, not exactly day by day but reflecting month to month or over the year, you can see very big changes. And at the same time, you’re changing your life, picking up things he can no longer do,” said Mike.

“As a carer you’re doing everything from the minute you get up to the minute you go to bed; You are supporting him in all of his medical appointments because he currently can’t speak. You’re washing him, shaving him, brushing his teeth. You don’t really get time to sort of sit and wonder, how do I feel about it all? You’re just too busy.

“Then there’s lower level things like the finances. Our financial commitments are high because of Tom’s health condition, and retirement means the income has declined quite significantly. But actually the most important thing is how our relationship has changed and how important it is to communicate, and keep that going in a meaningful way. Because he’s still the person I met 43 years ago, he’s no different.”

Mike and Tom quickly got involved in their local community and tried to reach out to others in the same situation.

“[When] you get a diagnosis like this and I think you need that strength from the community. It was very important to find places where we were accepted without question, because what we really wanted was support with Tom’s dementia. We were involved in the development of a memory cafe which was specifically for LGBT people, so that people can feel safe to come forward and get the help that they need.”

Mike accepted that as well as being Tom’s partner, he was also in fact a carer.

“It’s important to call yourself a carer, even if it’s only to yourself or to people you choose to, because it’s only through acknowledging it that you will get the support and information and advice that you need,” said Mike.

Mike feels strongly that the Carers’ Centre has been crucial for him and for other carers.

“They are the local one-stop shop. They can give you an insight into the kind of groups that are available, websites where you can go and get information, how to join other people in your situation, You need that extra support — and it’s surprising just how much there is available.

“[Our Carers’ Centre] has been a lifeline because they’ve given me the ability to have a voice, to be able to convey my experience and listen to other people. They’ve been very helpful not just for Tom but for me too.”Mike and his partner Tom have been together for 43 years, since they were both 19. Tom joined the Merchant Navy, leaving Glasgow to see the world, and it was when he came to London that he and Mike met.

In 2008 Tom started having some symptoms of minor cognitive impairment.

“I started noticing small things,” said Mike. “I noticed, for example, that we had accumulated 23 bottles of hand wash under the sink, Tom having forgotten that he’d already got some. Or I’d come home at half past five in the afternoon and he would just be finishing his lunch. But it takes a lot from noticing these small things to deciding it’s a medical situation that needs to be attended to.”

Because Tom is HIV positive, he was already having cognitive checks each year with the HIV clinic.

“They tested his abilities and we were told he was declining, but he didn’t get a formal diagnosis. In 2016, we pushed for a referral to a consultant, and he determined it was HIV-associated neurological disease (HAND). The diagnosis has had a lasting and significant impact for the couple.

“You’ve got to see it as two things. His world is changing, not exactly day by day but reflecting month to month or over the year, you can see very big changes. And at the same time, you’re changing your life, picking up things he can no longer do,” said Mike.

“As a carer you’re doing everything from the minute you get up to the minute you go to bed; You are supporting him in all of his medical appointments because he currently can’t speak. You’re washing him, shaving him, brushing his teeth. You don’t really get time to sort of sit and wonder, how do I feel about it all? You’re just too busy.

“Then there’s lower level things like the finances. Our financial commitments are high because of Tom’s health condition, and retirement means the income has declined quite significantly. But actually the most important thing is how our relationship has changed and how important it is to communicate, and keep that going in a meaningful way. Because he’s still the person I met 43 years ago, he’s no different.”

Mike and Tom quickly got involved in their local community and tried to reach out to others in the same situation.

“[When] you get a diagnosis like this and I think you need that strength from the community. It was very important to find places where we were accepted without question, because what we really wanted was support with Tom’s dementia. We were involved in the development of a memory cafe which was specifically for LGBT people, so that people can feel safe to come forward and get the help that they need.”

Mike accepted that as well as being Tom’s partner, he was also in fact a carer.

“It’s important to call yourself a carer, even if it’s only to yourself or to people you choose to, because it’s only through acknowledging it that you will get the support and information and advice that you need,” said Mike.

Mike feels strongly that the Carers’ Centre has been crucial for him and for other carers.

“They are the local one-stop shop. They can give you an insight into the kind of groups that are available, websites where you can go and get information, how to join other people in your situation, You need that extra support — and it’s surprising just how much there is available.

“[Our Carers’ Centre] has been a lifeline because they’ve given me the ability to have a voice, to be able to convey my experience and listen to other people. They’ve been very helpful not just for Tom but for me too.”

The Carers’ Centre has a dedicated Support Line to help you with any questions you have about caring.

Get free information and advice every weekday from 8.15 — 12noon on 0800 0388 885.

Outside those hours you can leave a message or email support@banescarerscentre.org.uk

Support us

There are many ways you can help us to support carers like those you’ve seen on this site. From following us on Facebook to raising funds to donating your time – please join us in creating a community where carers can stay well, stay connected and stay in control.

Know a carer who needs help? click here>