You can’t open any self help article and not read about creating routines. When I was a new mom twenty years ago, the suggested routine was to sleep when the baby slept. “Create a routine for the baby, it is critical.” Now caring for parents, I suggest you employ that suggestion again. Sleep! Get it when you can!! You NEED it. Create a nighttime routine for your loved one, it can be critical.
First, observe your loved one. Not just for one evening and bedtime, but over a period of time and that amount of time will depend on your parent and you. What am I suppose to observe? Does your parent have an existing routine at bedtime? Are there night time meds? Does your parent bathe in the evening? Is there a tv show time that their evening revolves around? Does he/she read before going to sleep? Observe. What could help? What could help them calm them to prepare for sleeping? Are there activities that would be better completed earlier in the day?
My second step was to process all the information I gathered and created a suggested evening routine. Yes, a suggested evening routine. Why? Respect is why. Depending on your parent’s disease progression, they may or may not have an opinion on their evening routine. EVEN IF, they really won’t be able to offer input, I believe they appreciate this respect. If they are still willing and able to discuss, by all means discuss and fine tune. Just be sure to clearly set the routine out for your loved one. This may include writing it down and posting it somewhere for them to refer to.
Life is fluid. Life caring for someone is fluid. Adjust accordingly. Do not necessarily abandon the routine the first time is doesn’t pan out. Give it a little time and adjust if necessary.
My mom has a routine now, which includes a few optional aspects depending on how she feels. She usually starts her evening with finishing the newspaper or working on a newspaper puzzle. If my mom has worked in the garden or worked up a sweat, she will take a bath. If she has not broken a sweat but is emotional or anxious, I recommend a lavender bath. She will generally concede and has been grateful afterwards. By the way, for the first 74 years of my mom’s life – taking a tub meant an inch of water. I insist on a tub at least half full of water! I remember her face after the first full tub months back! “That was wonderful.”
Fresh pajamas! Maybe not every night but a couple times a week provides your parent with fresh start to bedtime! Who doesn’t sleep better in clean pajamas? Seriously.
Bedtime liquid & medications. First, liquid to help her swallow her bedtime medications. Second, liquid to make sure she sleeps through the night and doesn’t wake due to thirst. For my mom, some nights this beverage is herbal tea, other nights it is Glucerna. We found on days when her intake isn’t as great as the effort she exerted during the day, the Glucerna helps her sleep soundly all the way through the night and not wake up with low blood sugar. (Note- mom isn’t diabetic, we do not need to measure blood sugar. This isn’t a medical statement. It is based on a previous medical condition.)
CPAP is next. We have entered a new stage in regards to this step. My mom has avoided use of the “machine” since July. I know this because, we – I – changed the headpiece since it was falling apart and wouldn’t stay in place through the night. We were in a hotel in Pennsylvania at the time, sharing a king size bed. There was no getting away from me! She didn’t like the new headpiece. Every time I fixed the complaint regarding the new piece, she had another complaint! Remember the winter socks and boots that your 3 year old fought to keep on??? Flashbacks – that’s all I am saying. So, for the months following, I have regularly suggested wearing the CPAP. Refusal. I contacted the home medical company, “she has the smallest pieces there are.” Finally, her husband took her in and they were blessed to meet the right customer service agent! The agent actually LOOKED at my mom’s head size, walked into the back and brought out a giraffe mask! My mom came home and told me not to look – then put it on like a prom dress reveal! Just as a note – I had taken my mom into this same home health care store. We scheduled appointments with the pulmonary techs. Still couldn’t get the child’s mask. My comment – keep fighting to get what your loved one needs.
CPAP on. Next, TV on a timer. Or Radio on low. Or just lights out. This completely depends on the day and my mom. I let her drive this decision. There is no reason for me to determine this right now.
Time to tuck in. Last Christmas, my sister bought my mom a weighted blanket. At first mom was hesitant. Why hesitate to use this beautiful and soft blanket? She was afraid she would get stuck under the blanket and not be able to lift it off of her. I assured her I would come check on her every 30 minutes until I went to bed. I did check on her, and she was sound asleep. She found that it was completely relaxing. Note – She was able to move the blanket. Moving a blanket off of you is different than lifting an entire weighted blanket. There are different weights for the blankets, pay attention.
Now the lights are off. Starting two years ago, my mom would come to me in the morning telling me that there was a crack in the ceiling and I needed to call the contractor! I went back and investigated, then got a flash light. I could never find the cracks or the water marks. My mom would either have these discoveries as she was trying to get to sleep or wake up in the wee hours of the night and see concerning things on the walls and ceilings… Something to be solved. So my mom agreed to go to sleep with the nightstand light on for a week. Then one of us turned it out about an hour later. It seemed to be helping – but was an unrealistic solution, since my mom doesn’t sleep alone!! How do we automate this? My husband purchased and installed smart light bulbs in her bedroom. We set them to go off after my mom went to sleep. Mom had no issue going to sleep with the lights on, but needed them go go off eventually or it wakes her later during the night. Solution found…smart bulbs.
As I was preparing notes for my mom’s next doctor’s appointment, it hit me! OMG – she is hallucinating. It never occurred to me -what experience with hallucinations have I ever had? Well, Grandpa (my mom’s father) had Parkinson’s and I believe he saw bugs crawling on his arms and attempting to dig them off , dug into his skin. Enough said, but he lived in Washington State and we did not – so I was removed from this. We spoke to the doctor about my mom’s hallucinations and we changed a medication. Definitely helped. Now she only has them occasionally. She is still aware enough, that she knows if she closes her eyes, the hallucination will go away. I hope this ability lasts for a long time!
The hallucination part of this story is more of a tangent – not part of a routine. However, according to my notes, the less reported agitation my mom has in a day and the more calm she is when she heads to bed, the fewer hallucinations. Could be coincidence. All I know is a routine helps her feel in control of something, therefore calmer.
Do your parents have evening routines? Have those routines changed as their illness progressed? How have you handled it?
Thank you for reading.
“I feel there is nothing more artistic than loving people.”Vincent Van Gogh