I Worry About My Care-Partner, My Spouse

Blessed with a supportive spouse, I am fortunate to have someone who is able and willing to help me anytime I need.

An attentive and supportive spouse

Rob makes a point to listen to me when I share the ups and downs of living with RA and MS. He pays attention and is good about noticing when I might be experiencing extra discomfort or disability.

An example: Rob will ask me if my hands hurt when he sees me rubbing my fingers or knuckles.

Sometimes I am in more pain than usual. But more often than not, I’m just deep in thought and gently rubbing my hands because it feels good. Other times I might be subconsciously keeping my hands warm with the extra friction.

A moment of feeling good and getting lost in thought can be a wonderful escape from the realities of illness and responsibilities. But I worry about how Rob might deal with rough patches in the future. Caregiving can be exhausting and burn-out is real.

Caregiving can be a family affair

For a long time, Rob and I have each been caregivers to our mothers.

I took care of my mother at home as her health deteriorated due to scleroderma, lupus, and pulmonary arterial hypertension during her final 10 years.

Rob and I have both taken care of his mother after she experienced a traumatic infection following total knee replacement four years ago. It has been an exhausting four years.

Various caregiving responsibilities

At first, Rob and I took turns living with his mother during the weeks following her surgery. We attended to her needs while she spent 6 months bouncing back and forth between a rehabilitation/nursing home and the hospital for additional surgeries that saved her leg.

We located an assisted living facility she could accept when it was clear she could no longer live on her own. We proceeded to clear out her home, updated it, and ultimately sold it on her behalf.

Although my mother-in-law lives in an assisted living facility, the caregiving responsibilities do not end. I accompany her to every doctor visit and manage her medication refills among other things. Rob is the go-to person to solve any other problem that she perceives. Even these activities can be emotionally draining and leave you feeling tapped out.

Anticipating the need for additional help

Thankfully, Rob and I work well together as a care team for each other and for our family members. But my needs are about to change in the near future.

I have been told by one orthopedist that I need bilateral total knee replacements (TNR). I’m ready to interview other surgeons to find one I feel has the experience I desire in operating on patients with potential complicating factors.

Now that I am seriously considering TNR surgery, I worry about how my surgery and necessary recovery time will affect my husband. He will need to burden all of the caregiving duties for both his mother and myself. I anticipate needing extra help at home for several weeks.

I am very fortunate in that medications have rendered my RA to a mild stage. I don’t typically have great needs at home caused by my RA. At this time Rob will carry heavy items that would strain my joints.

He also carries the laundry basket up and down the stairs as my osteoarthritic knees make it difficult for me to carry myself up and down the stairs. Successful knee replacement should help that considerably.

Being proactive about caregiver burnout

I am one who doesn’t like to ask for help if I don’t absolutely need it. It makes me feel weak and inferior which I know that I am not. The bottom line I guess is that I feel guilty for putting more pressure on my spouse when I know that he is already stretched very thin with caregiving activities.

The time to talk about the future is now

In writing these words, I realize that the wisest thing I could do RIGHT NOW is to talk to my husband about these worries. Talk to him about what we will do together when I need help at home after surgery. Talk to him about how we will work together as my disease progresses, which I hope is delayed for many more years.

We discuss caregiving for his mother so much that we don’t really talk about my needs at home. Like I mentioned before, Rob is really good at observing when RA might be intruding. It’s time to open up the lines of communication. Perhaps this inevitable surgery is making me realize that I will not always be as independent as I am right now.

If you have a care-partner at home, do you routinely discuss the current state of your disease and your potential need for additional help in the future as the disease progresses?

Please share your story in the comments. Together as a community we can learn from and support each other.

Be well,

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