Family support crucial to Co. Tyrone woman’s dementia journey

IT was around the beginning of the pandemic when Kathleen Kelly was all but given a diagnosis of dementia, leaving her scared and uncertain for what her future had in store.

The Tattykeel woman had noticed and dismissed some oddities creeping into her life, like thinking she was fully dressed, looking down, and realising she had forgotten to put on her socks and shoes.

However, in an act of dismissal that most people can easily relate to, she spied nothing sinister in these incidents, and certainly did not suspect them to be signs of an incipient illness.

But, while Kathleen was blasé about these changes, her children were not, as she explained to the  UlsterHerald earlier this week.

“My son found himself walking around the house turning things off, like the hob, the oven, the taps.

“My husband and daughter, too, started to think there was something not quite right. They would ask me a question and every so often my answer just wouldn’t make any sense.

“After telling me that they were concerned, I agreed to go to the doctor, having heard that an early diagnosis can mean getting the medicine you need to help slow the decline, or maybe even stop it in its tracks altogether,” said Kathleen.

After a visit to her GP, Kathleen was referred for a brain scan, where the consultant showed her a picture of her brain compared to a healthy one.

“At that stage we were all more or less certain that I had dementia, but I still needed official confirmation before they could put me on medication.

“However, because it was the pandemic and the whole health care system was preoccupied with that, I had to endure a very scary wait before I was eventually put on medication, all the while wondering whether my condition was getting worse.”

Upon being granted her prescription, Kathleen and her family hoped that they would soon see some improvement. However, the opposite occurred.

“The medication I got didn’t agree with me at all. Every side effect you could get, I got. I was depressed, getting headaches, and I was unsteady on my feet.”

The adverse effects of the drugs came to a crescendo when Kathleen collapsed during a shopping day in Derry with her daughter, Linda.

“I went down, the ambulance was rang, my doctor was contacted, and I was taken off the medicine.

“They put me on new medicine and it seems to be working.

“Honestly, though, had I been worse with the dementia at the time I collapsed, I don’t know if they would have been able to tell whether it was the medication or the condition. I am glad that I was diagnosed as early as I was. I have my family to thank for that,” said the 73-year-old.

But that is not the only thing that Kathleen is grateful to her family for.

“My son, Paul, and husband, Peter, both live with me, so they are a great help, and my daughter, Linda, lives a stone’s throw down the road. They are a huge help to me.”

Life changes when you receive a dementia diagnosis, to a lesser or greater extent, depending on severity and circumstances, but, as Kathleen explained, there are adjustments that can be made to accommodate your new needs.

“I used to do all the cooking, but now Paul is the chef and I do the dishes.”

When asked to comment on how this has impact the culinary quality on offer in the house, Kathleen laughed inscrutably.

“Many of the adaptations you have to make are not cheap; sensor lights so people know I am up and about; painting doors to make it easier for me to know where I am going; changing the colour of the cutlery so it is more visible; paying legal fees to grant my family power of attorney. I could go on and on,” said Kathleen.

As well as all of that, there is all the care that Kathleen’s family now provide for her. This, she said, has been one of the hardest changes to accept.

“For most of my life, I spent my time thinking and worrying about my children; now they spend their time thinking and worrying about me. Linda is never done looking after me, and that is time that could be hers. I don’t know, it is a role reversal that is very hard to get used to.”

However, despite feeling somewhat guilty for the pressure the condition has put on her family, Kathleen acknowledged how fortunate she is to be surrounded by a family so willing to help.

“They are so good to me, and I appreciate everything they do. I love them all anyway, but how they have helped me over the last few years has made this whole thing so much more manageable. They help me get out of bed, they get me talking, they get me eating, and they encourage me to go to groups, which is something that has made a massive difference for me.

“If I had advice for people it would be this: Get an early diagnosis and join as many groups as you can, especially the Campsie Hub, Memory Lane and the Colmcille Club.”