Caring for a spouse who is dealing with a long-term illness is a unique role with its own special challenges. Every caregiving dynamic is unique–and this is especially true when we are talking about the special one-of-a-kind relationship that couples enjoy. Nobody can know all of the particular troubles and joys you will have in the adventure of caring for your spouse. However, there are some broad points which are good for every person who is caring for their spouse to keep in mind.
Caregiving Will Change Your Relationship
Whether you are caring for a spouse battling cancer or dementia, when you become their caregiver that role will change your relationship. This can be very hard for some people. In all of the tumult of dealing with a sickness they hope that the one thing which will remain unchanged is the dynamic between themselves and their spouse. When caregiving begins to change that relationship, one (or both) spouses can become upset.
It is unavoidable that the presence of caregiving between spouses will change their relationship. How great the change is depends to a large degree upon how severe the sickness is and how consuming the caregiving needs are, but in the end when two people go from being healthy, equal, and independent partners to one person being dependent upon the other this will inevitably change their relationship. The good news is that this doesn’t have to be a bad change. With a good attitude and the right perspective, the previous good can transform into a new and different sort of good. The important thing is to realize the transition from the old dynamic to the new caregiving dynamic will be stressful.
How stressful it is to transition to a caregiving relationship between spouses is influenced by a number of factors: the nature of the previous relationship, the type of illness being experienced, and the personalities of the people involved. A relationship which was struggling before the needs of caregiving will often face additional problems when one of the partners becomes dependent. Dementia can inflict particularly significant changes in a spousal relationship as the illness strips away abilities, memories, and sometimes changes personalities.
We should not fear the changes that come in a relationship when one spouse must care for the other. It can be an incredibly rich experience for the couple. But we shouldn’t take up the task of caregiving for a spouse thinking everything will stay the same, or that the transition will be easy. Having a clear-eyed view of what is coming is the first step toward having a good outcome.
See Them for Who They are Today
One danger in caring for a spouse is being unable to recognize the changes that illness has brought to the other person. This failure results in conflict and frustration. When you have known someone for thirty, forty, or even fifty years it can be hard to accept that the illness is changing them. They are not exactly who they were before, but sometimes a spouse can become caught in seeing a person how they were before the illness came and they become frustrated that the sick person is not who they used to be. When my grandfather had dementia sometimes my grandmother would become frustrated with him because “he could do better.” Someone with a little more distance from their relationship could see clearly that no, he couldn’t do better. But my grandma had lived with a skilled and capable man for more than fifty years and with that long history between them she struggled to see more than what she had known him to be.
Mentally living in the past while caring for a spouse is an easy trap to fall into. Remind yourself daily to see them for who they are in that day–with all of their strengths, struggles, and needs. If you do this, it will save you much frustration when they are not the person you remembered from those years past.
There are many components of respect. It is important to continue respecting all people who are struggling with what can feel like the degrading aspects of being very sick–feeling incontinent, incapable, and dependent on help for the most basic and most private acts of daily life. But the particular issue that can crop up in a spousal caregiving situation is where familiarity breeds presumption. You’ve been with this person for more than half your life–you know how things are and need to be done. In that presumption of thinking you know better, there can be a failure to respect the wishes of the sick person.
Some people want nobody but their spouse to do the most personal care for them. Some people want anybody except their spouse to do that care for them. A husband or wife can be hurt when their sick spouse doesn’t want them to help with certain aspects of care–but these are very personal choices. It is particularly embarrassing for some people to have their spouse help them with certain needs and it is important to listen, understand, and honor these wishes as much as possible–even if sometimes it just feels like they are being difficult.
Accept The Sadness
There is a thread of sadness in all caregiving because being sick means something is not as it should be. But it is perhaps the most emotionally difficult to care for a spouse. The person in your life who you are closest too is now struggling, and you get a front row seat to witness every day of that battle. It can be hard. And if you are caring for your spouse on the journey through a fatal illness then your role becomes that of a partakers in the ending of all the deep good you had before.
It is important for someone caring for their spouse to allow themselves to feel the sadness and process it. Life is not what we want it to be, and loving someone means feeling the hurt of hard things–for them and for you. Losing a spouse is hard–losing a spouse you cared for through their illness can be incredibly hard. Don’t try to suppress that sadness or it will destroy you.
Live. Breathe. Feel. And have people there to support you when the sadness does well up like a flood.
Treasure The Good
Transitioning into the role of being the caregiver for a spouse is a challenge, but it doesn’t need to be a bad thing. If our eyes are open to the challenges we will face as a caregiver to our spouse, that can prepare us to be more able to face them and more able to see the good in spite of the hard things that come with illness.
At the end of the day it all comes down to what we will make of it. Caregiving is hard, but good things don’t come easy. The bond you had can be enriched by this new dynamic. Sickness cannot ruin a relationship unless the people involved allow it. Caring for a spouse can be full of meaning and bring a greater closeness in the shared life together.
Good things hide, but if you treasure them you will look until you find them. Though caring for a spouse may start out stormy, with perseverance and a good attitude it can end up being an adventure with memories for a lifetime. Just remember to treasure the good things, even in this place.