Partner, carer or both?

It is not uncommon for partners of people living with dementia to feel that their relationship has changed dramatically.   

We talked to people living with dementia, their partners and a Dementia Australia counsellor to explore if you can still maintain your partnership after a dementia diagnosis.  

 

From partner to carer 

Dementia Advocate and former carer Cheryl knows what it is like to have dementia turn your relationship upside down.      

“Over time, my relationship with Geoff evolved from being his partner to being his carer,” Cheryl, whose partner Geoff lives with dementia, said. 

“The emotional connection was severed.” 

When Geoff wanted to be by Cheryl’s side throughout the day, she found a way to create some much-needed space for herself. 

“I ended up buying myself a push bike and getting up early every morning to go for a ride so that I would be able to have some time to myself.” 

Taking on a caring role can be difficult and life changing. However, it is important to know a dementia diagnosis does not automatically mean a relationship is over.   

Dementia Australia Family Clinician Jane Smith said although maintaining a relationship may not seem possible at first, sometimes it can be about resetting expectations.  

“We all grow up thinking our lives will go a certain way,” Jane said.  

“We might think we are going to get married, have kids, a career and then enjoy a nice retirement with our partner. It doesn’t always turn out the way we imagined. This is more often than not the case when a partner is diagnosed with dementia and we may need to take on a caring role.” 

Jane said it is important to first start by trying to accept that things are not always going to turn out how we think they should and to let yourself feel whatever emotions come up when things change, whether this is feeling angry, sad, frustrated or any other emotion.  

“These types of feelings are normal and you should give yourself permission to feel them,” Jane said.  

“It is from there we can start to ask ourselves questions like ‘How can I reconnect with my partner?’ ‘How can we best communicate?’ and ‘How can we continue this relationship?’  

“You can also start to look for ways your partner is still trying to show love and affection and putting in effort to maintain their relationship with you. 

“Sometimes relationships and connections can be stronger after we go through something tough together such as a dementia diagnosis.” 

 

A need to be with each other 

Jenny, whose husband Noel was diagnosed with younger onset Alzheimer’s disease 15 years ago, said that despite the many years dementia has been in their lives they both still need each other and depend on the other for life and love.  

“Not long after his diagnosis I remember him drawing me close for a hug and telling me ‘Everyone has something in their lives to contend with. This is ours and we’ll accept it with grace’,” Jenny said.  

“Noel is now 15 years since initial diagnosis in 2007, but he is still emotionally connected to me. He’s still with me. 

“We have this need to be ‘with’ each other. ‘With’ is a simple word, but it is one of the most profound in our relationship.  

"I remember so vividly a moment several days after we were married. Noel had found an interesting log he wanted me to look at. I didn’t want to climb down the stairs to see it. I was exhausted. He just reached out his hand and said, ‘Come with me’. In that simple moment, something very deep happened and that’s how it’s always been – a being with. We have been ‘with’ each other ever since. 

“Just a couple of weeks ago I was frustrated and frazzled about something, not at all connected to Noel or his care. Yet as soon as I was with him, he reached out to me, he took my hand, rubbed it and then leaned into me from his wheelchair and voiced some soft, soothing sounds. He was there for me. 

“Some say they will remember him as he was before this demeaning, dehumanising, debilitating disease took hold of him. But I will always remember Noel as he remained true to himself throughout this journey: his courage, his love, his gentleness, his openness to people, his smile, his beauty. I adore him!” 

 

Uphill battles  

Although some connections can grow stronger, for some, the symptoms of dementia can create an uphill battle.  

Dementia Advocate Cam, who lives with his wife Kathy, said that his dementia symptoms of apathy, lethargy and loss of empathy make things difficult.  

“It is hard to do anything at all when you experience these symptoms, this includes investing time and energy into my relationship like I once was able to,” Cam said. 

“My symptoms mean I am not the person I used to be.” 

Cam’s wife Kathy said that after being together since the age of 18 it has been hard to see dementia impact Cam’s personality and their relationship dynamic as a result.    

“Cam let me know about his extreme apathy and lack of feelings in general during a session with Dementia Australia,” Kathy said.  

“He just blurted it out, as someone lacking empathy naturally would, and I thought wow that answers a lot of questions.”  

Kathy says that although their experience with dementia has been very tough, she has found some relief in attending a carer support group through Dementia Australia.  

“That group of women saved me I think,” Kathy said.  

“I encourage any carer to go to those.  

“I also encourage any carer or partner to seek out grief counselling. Grief counselling has helped me immensely to process hard emotions.” 

If you need any support or advice to help you navigate your relationship following a dementia diagnosis, we are here to help. Call the National Dementia Helpline on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.  

 

It’s not clear cut 

Cheryl, whose partner Geoff is now in residential care, said the way you may feel about your relationship will often not be clear cut.   

“When we are dealing with emotions, there are many layers and many different ways they can transpire and effect you,” Cheryl said.  

“It has been a difficult process to get to the point where I can say ‘Do I care about Geoff?’ Yes I do. ‘Is he missing out on anything?’ No he is not. He is being cared for. It’s just that I need to also look after myself and do what I need to whilst I still have the chance.”  

 

Every relationship evolves differently  

Family Clinician Jane says although dementia does not automatically mean a relationship will end, and that there are things you can do to try and maintain connection, it is also okay to acknowledge if this is not your reality.  

“Sometimes you will not feel the connection and relationship like you once did and you may decide that you can no longer continue your partnership,” Jane said.  

“Just how some couples may remain together and feel a stronger bond, the reality is others may not. It is important to acknowledge what you are really feeling and reach out to Dementia Australia or another  provider of professional counselling you feel comfortable with to explore these feelings and to get support and guidance.” If you need any support or advice relating to this topic or anything to do with dementia, we are here to help. Call the National Dementia Helpline on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.  

 

Want to know more about dementia and relationships? Check out these articles: 

How do you navigate intimacy with dementia? How does dementia impact a person’s ability and desire for intimacy? Can people with dementia give consent? In this article we explore these topics and provide practical advice for couples. 

Can aged care residents continue or start new relationships in care? Aged care residents have the right to access safe and high-quality care and services. But what happens if a resident wants to engage in intimacy, and should aged care staff interfere? 

Does dementia impact your libido? When Phil was diagnosed with dementia, he knew things would change but one symptom he didn’t expect was his lack of interest in intimacy. 

Should I stay or should I go? When Vicki’s new husband Michael was diagnosed with dementia, she quickly realised their life together was not going to be the one she had dreamed of.  

For more resources about relationships, intimacy and dementia visit our library guide here: https://dementia-org.libguides.com/relationships-intimacy-and-dementia 

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