From partner to carer: knowing when you need help

Marriage poses a variety of challenges, but throw in a dementia diagnosis and things can become even harder.

As we age, it is not uncommon for partners to take on a carer role when their husband or wife receives a diagnosis like dementia, which often puts added pressure and stress onto the relationship.

But carer Linda Clark, 75, who lives in Adelaide, South Australia is proof that your attitude and outlook can be a game-changer when ‘carer’ is added to your ‘wife’ title. 

After her husband of almost 60 years, 78-year-old Allan was diagnosed with Alzheimer’s disease seven years ago, Linda took on the carer role immediately which saw her having to keep track of appointments, make some hard decisions and also watch her life partner forget who he is. 

A good sense of humour and normalcy was Linda’s saving grace to get through it all.

“Keep both of your lives the same as much as possible. We still did stuff. I kept our life as normal as we could,” Linda said.

“I had to make the difficult decision of stopping him from driving and he is still convinced that a lady had taken his license and won’t give it back to him. 

“But generally, because of our nature, we would laugh about it and although it was very difficult we could always find something to laugh about.”

Decades of Linda and Allan’s healthy, happy marriage were peppered with small moments of forgetfulness and mild Alzheimer’s symptoms when more difficult decisions came after Allan assaulted Linda in their home last October.

During the altercation, Allan did not recognise Linda, mistaking her for an intruder and trying to force her out of their house. 

After discovering what she described as the limited emergency respite care options available, Linda decided to stay at her daughter’s house after the incident and had to make the tough decision to begin organising a placement for Allan in a residential aged care facility. 

Now Allan is thriving in aged care, Linda said it’s a hard reality to deal with and she battles her head and heart every day. She always knew if Allan became violent she needed to put her own health and safety first and reach out for help.

“I feel really bad because now he’s in an aged care facility and he has medication to keep him calm, I feel like he could come home. 

“I know I can’t, but I feel mean putting him in there because he still seems okay.”

Knowing Allan will need care indefinitely, Linda’s solution to staying a part of her husband’s care is to volunteer at his facility. 

“The last two times I’ve been he’s been sitting in his room just sitting there doing nothing. No TV on or anything. That’s not a life,” she said.

“He’s still got brains there and he can still do things. So I thought as long as I can go down there and do stuff like play bingo and he’s allowed to come with me, it would be good.”

Allan is active in his aged care community, tending to the garden and participating in some lifestyle activities with others. 

Linda’s advice to anyone who may have a partner in a similar situation is to keep your cool, despite how difficult it is. 

“When someone asks you the same question five times in five minutes, that’s when it can be quite stressful, but try not to get too angry because it’s not their fault,” she explained.

Linda also recommends starting the aged care journey through My Aged Care as early as possible to avoid stress, but still said there is limited support for carers, particularly those who are caring for partners once their loved one receives a placement. 

Linda received some carers’ support through a Home Care Package (HCP) before Allan went into residential care but she was frustrated to find carers did not take Allan outside of the home much and when they did, they were not as attentive as she would have liked.

“I would have liked for them to take Allan out for the day, but they don’t do that,” she said.

“It’s usually for me to go out for about an hour to go for a coffee or something, but I didn’t really want to go out. I wanted to stay home and get stuff done and have a rest.”

While navigating life as a carer, Linda would often lean on carer support services, talk to carers or other staff who would come to the home for advice, and stay engaged in her social circle to stay active and feel supported.

Have you become a carer for your partner? What was your experience? Let us know in the comments below.