Dear @snowball
Like the rest of our community I empathize with everything you’re dealing with in your current situation and send you prayers and best wishes.
While I haven’t experienced caretaking for a spouse, I was the primary caregiver for my parents for the last 9 years (up until my mom’s passing last month). I am writing to you because your story touched me and I hope to help in some small way.
You have received great advice. I hope you don’t mind if I share what I found helpful as I navigated rehab, hospitalizations and day-to-day care. This may end up being a very long rambling post, but please forgive me. I have good intentions.
You don’t need to hear my long story so I’ll try to condense my thoughts.
Caregiving for a loved one is so stressful. I suggest adopting patterns of behavior to reduce some of the stress. I realize some things that worked for me, may not work for you, but I recommend:
-
lots of lists…with consideration of proactive measures and
-
a calendar planner to record “stuff”. It’s amazing how memory is affected by stress. I would take a quick photo of the whiteboard at the hospital and rehab to keep track of nurse and therapist names. Then later I’d write the names down along with important information in the planner. I also would note when doctors visited, their name and bullet points of the visit, highlighting action I needed to take so I wouldn’t forget.
Also your husband may find having his own 8x11 monthly calendar useful. Days in rehab can feel a little disorienting. Days of the week become blurred. Visualizing and crossing off days helped to mark time, record achievements and approaching goals.
In my opinion a written list helps organize one’s thoughts and declutters the mind. As you check things off the lists it gives you a semblance of control and accomplishment as you check them off. When creating the lists try to remember to address emotional needs as well as physical needs.
I’d start with the “have to” list which would include things like pay the bills, maintaining the house/yard/shopping/etc. Delegate where possible. Adult children often want to contribute in some way and sharing a list of ideas where assistance would be appreciated can be helpful. They can pick what works for them. Don’t try to do everything!
(Quick note: I remember having to make quick shopping trips for things. I didn’t want to impose on anyone and I figured I could always do it during my “free time”. In hindsight I think that was a mistake. I would’ve benefited from having someone be my go-to once a week or possible short notice shopper.)
Then there’s the proactive list, which is hard because it sometimes feels like conceding to negative expectations. For us, most things did come in handy. If they are never needed, they can be returned or donated…the shopper should definitely keep receipts and note the return policies. Items we purchased include a tray table, a shower chair and a portable toilet seat with handles that goes over the toilet (no screws) but can also be freestanding with a below seat bucket.
You mentioned diapers so I’ll mention Costco sells these which can help protect the mattress and linens.
https://www.costco.com/kirkland-signature-extra-large-absorbent-pads%2C-30-in-l-x-23-in-w%2C-100-count.product.100229990.html
One list that might be good to give structure to the day is a (rough) daily schedule. At the end of the day it can provide closure and can serve as an introduction setting up expectations for the next day…hey, it’s the teacher in me. Lol.
Your husband can give input to the list, giving him a sense of control over his schedule. For instance Morning: get dressed, breakfast, brush teeth/hygiene, physical therapy, outdoor time, meditation/relaxation Afternoon:(tbd) Evening:(tbd)
You learn what the loved one likes and dislikes.
Dressing reminds me that I bought easy slip on indoor shoes and easy to put on and off clothing.
Btw putting a list or directions in plain sight can be helpful. I used painters tape to hang them on walls, mirrors, etc.
Also video taping important stuff that you communicate to your husband may come in handy. I avoided confrontation numerous times with my mom when she insisted I hadn’t told her something. All I had to do was whip out my phone and show her the time stamped video. Just a thought.
Lastly, I’ll share my mantra as a caregiver to my mom. I said the bold part over and over.
You’re doing the best you can (in your current condition). I’m doing the best I can (under these conditions). We’re not going to be perfect but we’re a team. We’re going to face this together. It won’t be easy because we don’t have the experience. But we will learn together. We will have to make sacrifices, compromise and be better communicators as we navigate this uncharted territory. We have to play this hand we’ve been dealt…and most importantly, everything we do, we do it out of love.
