Getting some financial support takes a lot of weight off

About 18 months ago, my wife started to develop memory problems. Then last year, they started to get worse.  

I took my wife to see our GP and we were referred to our local memory assessment clinic.  

A formal diagnosis confirmed my suspicions that she had dementia. She was diagnosed with Alzheimer’s disease. 

Everything then happened at once. Straightaway we were inundated. Numerous appointments, messages, letters, leaflets, brochures. People kept telling us this and telling us that. It was totally overwhelming.  

I’ve always been fairly able to deal with problems and I spend a lot of time helping others. But my wife’s diagnosis knocked me. I’d been a journalist for many years and always took notes but suddenly there was so much to take in that I just couldn’t keep track of who I had spoken to and what they’d said. I couldn’t make notes.  This is how I knew that I wasn’t coping. 

Now in the past I haven’t shied away from or struggled with filling out complicated forms. I successfully claimed Pension Credit for my mother and my mother-in-law. Despite it seeming like the forms are trying to catch you out, by asking similar questions in slightly different ways on different pages, I was able to complete them and have Pension Credit awarded. 

However, when it came to trying to do this for my own wife, it was just too much and I just couldn’t deal with it. 

Rob went through the questions with me and part completed the application on my behalf. He then liaised with me to finalise the application. He predicted what I was entitled to and this is what I was awarded to the penny! 

The same thing again with claiming for Attendance Allowance and this is how we went on. 

Rob told me about council tax discounts and it was thanks to him that I pursued this and now we don’t pay anything at all. 

Rob also checked to see if we were paying for our TV licence. When he found out we were, he got me a refund. 

He raised whether we had Legal Power of Attorney in place, and fortunately this was something we had set up after advice from our GP. We had managed to get this done while my wife still had capacity to consent.  If we hadn’t got this set up, it would have been useful to know about it. 

There are so many other things to be worrying about all the time such as – has my wife left a pan of soup to burn on the gas stove… as well as having worries about my own mental health.

For the past 30 years, I’ve lived with a condition called Dissociative Fugue. This means I experience temporary amnesia and sometimes ‘disappear’ and find myself somewhere else. My wife has been my carer when I have one of these episodes. Fairly quickly it became clear that she was no longer able to look after me. I now have an alternative detailed care plan in place so that I get the support I need. 

We live in our own house and we were getting by on our weekly income. After a dementia diagnosis, costs and expense increase a lot. Our gas and electricity bills have gone up. My wife feels the cold a lot more than she did before, so we have the heating on more. Then there’s the issue of remembering to turn things off.  

You also become stuck at home 24/7. If you do go out, you can’t relax. You’re constantly worrying about what might be happening and you just want to get back as quickly as possible. 

The additional income has meant that we’ve been able to get some house maintenance done that needed doing. We’ve also been able to enjoy our shared hobby of birdwatching. We actually have an aviary in our garden. WE get so much pleasure from watching the birds nesting and breeding. It’s something we can still do together.

The extra money has also meant that I can go out one day a week, knowing that my wife is safe and comfortable. My wife didn’t want total strangers coming to our home. So, we have found a solution that works for us. We pay our daughter to spend a day a week at ours. She helps with cleaning and meal preparation as well as spending time with her mum. This means I can leave the house without worrying. 

I spend most of this time volunteering. I’m involved with my local mental health trust. I speak up for people with mental health problems, who don’t feel confident speaking themselves.

I’m wheelchair bound and can’t walk very far without being in pain, but I drive and enjoy visiting new places. From time to time I get together with other disabled ramblers.  We explore the great outdoors on our off-road mobility scooters.  

These regular outings help me to cope by giving me time to do things for myself. 

*Name changed to protect carer’s identity