Heart failure can cause permanent emotional and physical changes. Rob Obey shares six things to keep in mind when your partner has a heart condition.
Heart failure is a serious condition that affects my wife's (Bridget's) quality of life as much as mine.
As my condition deteriorates, I'm having a hard time doing activities I used to take for granted.
Things like walking, climbing stairs, cleaning, personal care, bending over and even breathing "correctly" can take it out of me.
On top of that, I'm constantly bone-tired. Fatigue is much to blame for my inability to do what I need and want, and I never know when another wave will strike.
Living life this way frustrates me. More than that, I'm conscious of how frustrating it must be for Bridget. Of course, I'm not trying to pile guilt on myself for having health conditions. What's happened has happened. Still, I can't ignore how much Bridget's life has been affected by my limitations.
So, today, I thought I'd share some of my thoughts and feelings as someone with heart failure. For any partners reading this, please remember that your loved one may have different sentiments about life and relationships. What's true for me isn't a blanket statement for everyone with heart failure or cardiovascular disease (CVD).
But your and your partner's mindset and emotions can be tough to communicate. If any of these points ring true, please discuss them with your GP or health provider.
1. We may have changed as people
Heart failure has changed me.
Physically, my body has changed. It struggles as it tries to compensate for my heart's reduced ability to pump blood. The effort's exhausting for something that should happen naturally. As a result, I tire easily now, and getting back into "functionality mode" can take some time.
Psychologically, I grapple with the realisation that this is as good as it gets.
As the years go by, my symptoms will increase and further limit me. I know I'll need more support. I'll probably have several hospitalisations and rely far more on my loved ones than I'm comfortable with.
I look at life differently nowadays, too. I spend more time with my thoughts than anything else.
I don't want to talk about heart failure constantly, but it never leaves me.
Sometimes, Bridget wants to discuss my condition and how it'll affect us in the future. Bridget - I know it looks like I'm shrugging you off or being purposely vague.
I'm not disinterested in the now or the future. I know how important it is to talk about our health. But, as "HEART FAILURE" runs through my mind most of the day, I'm sick of it (no pun intended).
Partners: please keep this in mind when discussing heart failure with your loved one. We aren't being deliberately elusive. In truth, many of us are worried about what's happening, and talking about it can disturb us even more.
2. Changes in our relationships will affect us as much as our condition
This is uncomfortable, but it has to be said.
Bridget and I's intimate relationship has suffered immensely.
As I mentioned, heart failure means blood doesn't pump around my body like it used to. I won't spell it out; I'm sure you know what I mean.
I haven't lost interest in intimacy. But, most days, my body isn't up to it.
I know help's available. The thing is that I'm too embarrassed to discuss it.
Your loved one might be having the same trouble. In most cases, they still feel the same about you as they did before their CVD diagnosis.
I know it's difficult, but please don't confuse our physical trouble with rejection. If the problem continues, we may initiate less out of embarrassment, guilt, or shame. Again, that doesn't mean we don't want intimacy or that our feelings for you have faded. It's more that we fear our expectations will be disappointingly different from reality.
Talking might help, so be sensitive and take these conversations slowly. Our negative feelings can be our biggest barrier to getting help, so gentle understanding will benefit us much more than pushing.
3. Mood regulation may be a challenge, despite our best efforts
Depression is a common side effect of heart failure. I, however, describe myself as in a low mood (dysthymia) rather than majorly depressed.
I was prescribed anti-depressants for fibromyalgia, so I'm being treated for depression.
Regardless of the technicalities, I can't summon up much enthusiasm most of the time - even for things I used to love. This can appear as me being unbothered or lazy; truthfully, it's more of a mental block.
I lack the motivation I used to have in spades. And I hate myself for it because that's not me.
Anhedonia (lack of pleasure) and demotivation mean I exercise less. Any activity I can manage has less of an enjoyable "hit." This leads to weight gain, which puts a strain on my heart.
It's a vicious circle, and it gets me down. But it's even worse when people point it out to me.
From your point of view, if you suspect your loved one's depressed, don't badger them. Just listen. Offer to help, instead. Let your partner know you recognise it's unlike their usual disposition, and offer to visit a GP with them.
Most of all, be patient!
4. We may harbour feelings of guilt, despite your reassurance
I often feel guilty about how my heart failure affects Bridget and the kids.
I feel guilty about the stress my heart failure has caused them. I feel regretful about the things we can no longer do.
But my heaviest guilt is knowing I will probably leave them earlier than I should. I think about all the critical life events and milestones I'll undoubtedly miss, and I'm flooded with remorse. It's no one's fault, yet I'm still causing my wife and children future pain.
As hard as it is to accept, these thoughts aren't unreasonable.
For partners, the best thing you can do is remind us there's nothing to feel guilty about. CVD can be terminal. Still, we shouldn't let it end our lives psychologically before we're physically "ready" to go.
Instead, encourage us to make the most of each day and make every minute together count.
5. Though taking a back seat is a must, we may feel like we're missing out
Has anyone heard of Fear of Missing Out or FOMO?
FOMO keeps me pushing myself to participate in life, even if it doesn't look like it. "FOOMO" (Fear of OTHERS Missing Out) also compels me to dig deep into my energy reserves because I don't want Bridget and the kids to miss out on anything.
I'm good at creating activities that involve little effort. I've mastered the art of travelling with as little effort as possible - Bridget and I are travel bloggers, after all.
I cannot go on the same long walks or push Bridget's wheelchair for miles. But there are ways we can travel and spend time together.
Bridget now uses a power chair, so we take many more short trips than long holidays. Ironically, travelling this way is more enjoyable because we do everything we used to at a slower, more suitable pace.
Have a chat about the things you used to enjoy doing together. Try to figure out new ways to do them. Nine times out of 10, there's a solution. Dig deep into your mental and physical reserves to find it.
6. The future may weigh heavily on us
It's not unreasonable to be fearful of the future. I have made my peace, but I'm still afraid.
I don't want my family to endure a long, drawn-out illness. We all know I'm not getting any better. Still, seeing my condition take its toll isn't the same as knowing about it.
It's important to me that Bridget and the kids understand where we are.
The future is uncertain for everyone. As a heart failure patient, it's even more precarious. That's why I openly talk about what the future could hold.
Talking in these terms isn't easy - but it is necessary. I made it easier for my family by discussing one of life's biggest taboos (when we were ready and able to handle it).
This communication method may not suit you and your loved ones.
But I know that it worked for us - to some extent.
Some final thoughts on helping your loved one with CVD:
1. Ask them questions
Don't bombard. Ask what would be helpful, don't assume.
2. Be honest with them
Share what you worry about and what your fears are. Don't skirt around the issue, and don't play down the seriousness of heart failure.
3. Let them grieve
Give your partner any space they need. Let them grieve for their old lives. Most importantly, don't make false promises, no matter how comforting for them and you.
4. Reassure them
Reassure your partner with CVD that, no matter what, you'll support them.
A word of warning, though: there's a fine line between support and wrapping someone up in cotton wool.
Constant reminders and prompts become annoying after a while. While we want to be assured of your support, we don't want to feel helpless or mithered.
5. Love them
Most of all, love them as you did before.
Circumstances might have changed, your loved one with CVD may have changed, and you've probably changed.
But in the end, there's no reason you can't love each other as you did before their diagnosis.
I wrote this post to give you an insight into what it's like living with heart failure.
Moreover, I wanted to help you understand what is going on in your loved one's mind. Granted, I got pretty personal, and I hope it wasn't too uncomfortable to read.
If you can take one thing away from this post, I hope it's that heart failure is nobody's fault. It changes us, but we can learn to live with it together.
NPS-IE-NP-00551 November 2022