caregiver sleep

SoMD

Hi, all.  I searched for possible answers to my question, but found none, so I'm posting my question in hopes someone has thought of solutions to the problem I'm having.

Setting the stage:  I am currently sole caregiver for my mother, who is mid-stage ALZ and lives with us.  She currently needs no help with the ADL, just constant supervision.  I am working on getting caregiving help, but until I find help, it's just me.  My husband does live with us, but does not assist with caregiving, only adds to the stress of the household, unfortunately.

So my problem is with my sleep....or lack thereof.  I see tons of entries about the amount of sleep the LO takes, but my problem is that my mom gets up before 7am each day and refuses to go to bed before 11pm.  If I wish to have any time to myself at all, I have to do so by getting up earlier in the morning, which I do by setting my alarm at 6am.  That means, at a maximum, I'm getting 7 hours; and it usually turns into less because she usually gets up before 7am, and she is usually up after 11pm, trying to feed her cat its bedtime meal for the 2nd, 3rd, 4th, etc time.

She does take a couple of short naps throughout the day, but I am not a napper (it makes me feel more tired and irritable), and I need those times to do my ADL (lol), so napping for me doesn't work.

I'm sure someone out there has had the same experience, so I'd love to hear how you solved for this problem.  I know how unhealthy it is for my brain not to have enough sleep, and I know I'm suffering from sleep deprivation.

Ideas, anyone?

Gail

Shevie

I wonder if you used a diffuser with essential oil such as Lavender,  soft lighting, maybe relaxing music same time each night with a cup of Camomile tea. This might create an atmosphere of relaxation and new bedtime 8:30-9:00. Dark blackout curtains in her bedroom so daylight won’t wake her as early  

SoMD

Oh my goodness, Shevie, those are all excellent suggestions - and ones I would normally have thought of before - were I not so tired these days!  THANK YOU!!

Anyone else have ideas to share?  Keep 'em coming!

Gratefully,

Gail

LovingAwareness

I feel your pain - Dad is such a shadower of me that he always wakes up when I do in the morning, which is aggravating when I get up early and sacrifice sleep specifically to get some work done. And nap time is so irregular - that time is pure gold, but I never know how long I'll get - if he says he plans to nap for an hour, he could be back in 20 minutes or he could sleep four hours until dinner. Makes it hard to plan the time or do anything that requires focus. 

Has she been tested for sleep apnea? Dad wears a CPAP machine for his sleep apnea and it functions both to treat his condition and health and also as a white noise machine so I will not wake him up by creaking the floorboards when I tiptoe past his room. If she doesn't need a CPAP or can't learn to wear one (I don't think Dad could learn to accept it if he hadn't started wearing it years ago), then maybe you could get a white noise machine or air filter that would create a noise barrier - that way you wouldn't wake her up by running the blender in the kitchen, etc? 

If any of her medications make her sleepy - (or if her doctor would agree to adding melatonin to her medications, if she does not take it?) - maybe you could give them to her earlier in the evening so she would want to go to bed earlier, and then you'd get some you time before you need to turn in, or you'd get your full 8 hours?

ninalu

Hi SoMD,
When I was caring for my mother as the sole caregiver, my rest was always topic for discussion with mom's PCP. For him, her care was directly impacted by my wellbeing, so he always asked whether I was sleeping through the night. 
 
We ultimately helped my mom's sleep and night-time energy / anxiety with pharmaceuticals. From early on in her journey with Alz, my mom showed signs of increased activation at the end of the day. Sometimes she'd seem anxious, but more often she just seemed extra chatty and companionable (needing company / entertainment) in the evenings. I was originally resistant to give mom medication for this, especially when she didn't seem obviously anxious or nervous. What I came to realize (with the help of mom's PCP & neurologist) is that the medications, when they work well, can help the patient rest and feel better / more balanced overall. It took some trial and error (and a couple appointments with her doctor) before we landed on a small dose of Seroquel. This med took the edge off of afternoons and evenings and made for some very nice - CALM - evenings and bedtimes. Further, as time has passed, we've been able to increase the dose of this same med for her wellbeing / calm / rest as the disease progresses.

I would still encourage you to pursue caregiving help. But also looking at meds could be a big boost in quality of life for you both. One big risk to caregivers is their own health suffering due to the stressors. Your mom is so fortunate to have you loving and looking out for her. 

Sending good wishes.  

ninalu

SoMD,

One more thing I just thought of that helped us. My mom's chattiness and sociability increased a lot with the Alzheimer's. When she started to attend a daycare program during the weekdays, her evening fatigue increased because she was getting the socialization and activity she needed to become tired. Her anxiety decreased as well, again presumably because of having those connections that we all need. Her sleep was better overall. 

I found the daycare program through my mother's primary care doctor (PCP.) Mom actually preferred the program over 1-1 caregiver companions when given a choice. I think she liked having more people to interact with - plus there were games, music, activities, etc. 

SoMD

Loving Awareness, thank you!  It does sound like you're quite familiar with my situation   You gave more helpful suggestions (white noise and melatonin), and I appreciate that.

I decided to look up melatonin and brain health, and I found a few articles urging caution in using melatonin, especially as it relates to cognitive impairment and dementia (and also if one takes SSRI antidepressents).  Of course, everything we do as caregivers is on a cost-benefit basis, so there may be times that its use will outweigh even those cautions.

I'm so thankful to have input from kind folks like you, LA!

Gail

SoMD

Ninalu, thanks, as well, for your input!  I will definitely keep pharmaceuticals in my quiver, and I also wanted you to know that I was already working on getting Mom into our county's senior center programming.  I'm hoping that, once I do get caregiving help, we can combine that with regular programming at the senior centers.  I agree that keeping her busy in the daytime (something I try to do, but need help doing) will help her rest better in the evenings and nighttimes.

Gratefully,

Gail