The highs and the lows: Caring for my husband after his Alzheimer's diagnosis
On paper, Cathy and Alex Clark appear to have the ultimate retirement. Whether it’s catching up with friends in their retirement village, taking luxury cruises, going to the movies or attending dance classes, there’s not much the couple don’t do together.
What many people don’t realise is Cathy has actually been Alex’s fulltime carer since he was diagnosed with Alzheimer’s disease in 2015. Alex’s physicality is still quite good, but his memory has declined so rapidly since his diagnosis that he often can’t remember what he did five minutes ago. He also struggles to remember long-past events.
“As a carer the main challenge is just to more or less be there for him,” Cathy says. Alex can complete daily tasks such as showering, eating meals, doing the dishes or taking medication, but needs constant prompting from his wife because he simply forgets what tasks he’s completed or what he needs to do next. Even with clear guidance from her, Cathy explains there are times where it all gets a bit much because Alex can’t follow her instructions.
“It can be very frustrating at times because you maybe tell Alex to do something and then five minutes later you find he hasn’t,” she says.
Previous treatments for bowel cancer left Alex with incontinence issues and there are times when he’ll remove an incontinence pad but forget to put on another. Cathy describes this as one of her hardest jobs as a carer, but her frustrations about it often lead to her feeling guilty about her anger.
“I get cross because it means I’ve got washing. I feel awful afterward but then fortunately 10 minutes later he’s forgotten.”
Another struggle for Cathy is not being able to communicate easily or discuss important things she once did with Alex.
“I feel really on my own in regards to any decisions that have to be made. And the same with banking, and finances,” she says. “I’ve had to do a quick-learning course on taking over the finances and things that he used to do.”
Fortunately for Cathy, she’s learned tips about how to care for Alex and herself by joining a support group. Once a month she and Alex meet other carers and people with Alzheimer’s at a local café. In addition to the social aspect of these meet-ups, it’s a chance for carers to exchange helpful coping mechanisms and provide support to one another.
Through this group, the couple has joined an exercise group with other carers and Alzheimer’s patients so Alex can also comfortably participate in physical activity. While these groups benefit Alex’s health, they’re also important for Cathy’s mental health and wellbeing.
“It’s wonderful because you learn that it’s not just you going through this,” she says.
Because Alex needs constant supervision, Cathy doesn’t get much alone time to herself and instead chooses social activities they’ll both enjoy. She reminds Alex about their busy social lives by jotting down notes on a calendar next to his favourite chair.
“I just keep as busy as possible, otherwise if I didn’t Alex would probably just sit all day and not do anything,” she says.
Some days the village bus takes them on excursions, while other days are filled with walking, bush dancing, card games with friends, music therapy and even meals out.
“Fortunately we’ve got friends we can join and go out together, to films and music and different entertainments,” Cathy says.
Social connections like these are important for carers, given as many as 51 per cent categorise themselves as lonely and 54 per cent are socially isolated some or most of the time. For Cathy, she can talk about her emotions and frustrations with friends, while they can also care for Alex for short periods if she needs to attend a medical appointment or a meeting.
Doctors and GPs are a great starting point for connecting carers with support services. These services can help carers find support groups in their local area and can also assist with developing coping mechanisms, finding more information about Alzheimer’s and even tips about becoming a power of attorney.
“There’s a lot of support out there available if you take advantage of it,” Cathy says. Cathy also knows that exercise and diet is one way to delay Alex’s cognitive decline and keen to keep her husband as healthy as possible, cooks him nutritious meals and encourages regular physical activity. He also takes Souvenaid® on a daily basis as recommended by his specialist.
While she does as much as she can to help her husband, Cathy is also realistic about how much support she can offer and believes setting realistic goals or expectations is important to cope as a carer.
“Accept that you can’t be perfect all the time, accept the fact that you’ll get angry,” Cathy says. “Just be good to yourself.”
Do you care for someone with Alzheimer’s disease?