When is caring for your spouse at home the wrong choice?

oldehandsholdigI am invited to provide “Caregiver Academy” workshops around the metro-DC area and get to meet a lot of spouses, as well as adult children who are caring for a loved one. At a recent talk, a gentleman came up to me after everyone left and wanted to talk about how he might be able to better care for his wife at home.

“What kinds of things can I do beside sit her in front of the TV?”; “Why does she insist that she’s showered when she hasn’t for days?”; “When should I start thinking about finding a memory care community?”

I could hear the pain in his voice as he was battling with frustration, fatigue, and the marriage vows he made. I shared with him that I had recently heard and also seen statistics that show how often the caregiver predeceases the person they are caring for. He needs to put the oxygen mask on himself so he can be a good advocate for his wife.

He also started talking about how they are continuing to lead the life they have always lived. They are going out to dinner with friends but she won’t talk and is now eating with her hands. As much as it pained me to lose my parents bit-by-bit, I truly can’t imagine going through this with a spouse. That promise of a retirement together unravels as you try to maintain a sense of normal.

I don’t think there is a right answer that fits everyone. However, what I do know is that you need help be it spouse, partner, sibling, or adult child.

Because it’s easier to see the choices that I made in the rear view mirror, I will always suggest to people that they bring in more help if they can so they can enjoy their original role (spouse, sibling, adult child). The caregiver role can eclipse all others and I regret that a lot of my time was spent as a caregiver, and not her daughter.

  • Are you able to bring in some care for a few hours a day so you can run errands or get to your own doctor visits? There are probably a host of local home care agencies in your area and many have caregivers specifically trained to care for individuals with cognitive impairment and dementia. They typically run from $20 – $28/hour. There are also means-based options for those that can’t afford to privately pay and your local Area Agency for the Aging will be able to tell you more–you can find one near you here.
  • Are there local adult centers that offer classes or activities that your loved one could enjoy? We have senior centers run by the county and day programs run by several non-profits. Don’t dismiss them until you have tried them. They have music programs and run activities that will engage your loved one where they are. I know how much my mom wanted to continue playing bridge, but could no longer.  She quickly engaged in the arts and crafty activities when she joined them.
  • Have you found a caregiver support group to connect with other caregivers? Some even offer respite when you meet. Being able to talk to others who are facing the same issues can provide you with some ideas as well as companionship.

There might be medical factors that make living in a community the right option for you and your spouse, or just your spouse. You just need to find the option that is right for you. They need you to be a good advocate, not necessarily help them with all of their activities of daily living.

What do you think your spouse would want if you had this discussion a decade before it was personal? Wondered. 


Security, will you please escort my Mom to the car?

security guardMy brother has come to town to help manage the coming appointments and support my parents. When he goes out to visit my parents on Sunday, my Mom reports that my Dad seems to be choking in his sleep.

We know he has a tumor in his mouth but are waiting to see an oncologist and don’t really understand how fast the tumor can grow or its exact location. We understand the tumor has tethered his tongue and he can’t move it at all. In mid-August at his physical, I watched as the doctor had him stick out his tongue and put her hands in his mouth to see if she could find any reason he was slurring and found nothing.  A month later, he can’t move his tongue and finds eating painful. Could the tumor be growing that fast and be blocking his airway?

My Dad agrees to go to the Emergency Room — our appointment with the oncologist is several days away and now my Brother and I are worried my Dad might choke to death before we even get to that appointment. I meet my Dad, Mom and Brother at the Emergency Room.

My Dad sits quietly, but my Mom begins to grow anxious and asks why we are here. She tries to talk my Dad into leaving. When we review the reasons we came with my Dad, he agrees to wait a little longer. My Dad is called and I walk with him back to see the Doctor while my Brother stays with my Mom. I tell the Doctor that he seems to be choking, recap the details of the tumor and mention that we haven’t seen our Dad take in more than a few sips of liquid in days. They put him on an IV as we wait to see if he’s aspirated.

The activity and change of scenery is difficult on my Mom and she is agitated. She starts talking loudly and rudely in the waiting room. My Brother brings my Mom to visit my Dad in hopes it will calm her down. Instead, she begins to berate my Dad and now he is agitated too. She demands that we leave and my Dad tries to get up but realizes he has an IV in his arm. My mom moves to pull it out of his arm.  As I’m trying to divert my Mom, my brother goes to get Security.

We recognize that the change of scenery and getting bumped from my being my Dad’s advocate has tipped her scale and she is really off-balance. My Mom orders me to leave the room. Before I go, I make her promise me that she won’t pull the IV out of Dad’s arm. As I walk out, the nursing staff moves in  as my brother arrives with Security. Thankfully one of the nurses is able to soothe my Mom and helps walk her to the car so my Brother can take her home.

I as sit in the hallway, the ridiculousness of the situation hits me and I begin to laugh  I’m still chuckling as I walk back into my Dad’s room to continue the wait. Witnessed.