caregiving

Sleep deprivation is a common challenge for CarePartners.

I know I didn’t need to say it, but getting a full night’s sleep is one of the biggest challenges I face in caring for my husband. It takes me longer to go to sleep because I can’t let go of the worries of the day. My sleep is disturbed because I am still aware of any noises or movements he makes at night. We get up to take meds or use the bathroom and then my brain won’t let me go back to sleep. The reality is that I sleep less and the sleep I get is less restful which impacts my health overall.

What can I do? GREAT question and there are lots of answers available but do any of them really work? AARP shares 4 tips and their resources for caregivers that I can try. Their suggestions include creating a restful space for yourself to sleep which may be in another room, I don’t want to leave my marital bed to get a good night’s sleep. They suggest setting aside a time each day for worries, but then how do you keep them from creeping back in the middle of the night? I already have a bedtime ritual that is supposed to promote sleep and it works on occasion. Their final idea is to use relaxation techniques to help me transition into a more peaceful state of mind, something that has never helped.

It seems like I am being negative in this blog and that isn’t my intention, I’m just being realistic. One thing that has helped me is talking with fellow CarePartners and knowing I’m not alone in this challenge. Some of them have found success with melatonin supplements, others use cbd drops. I have spoken with my Primary care doctor because she needs to know that I am facing this challenge and has been working to help me eliminate any physical reasons that might be causing insomnia.

I have decided to look at those middle of the night awakenings as opportunities to get up and have some quiet time for myself. A piece of toast and some warm milk, a good book and my cat. I know I’ll pay for it tomorrow, but hopefully there’ll be time for a nap. If not, there’s always tomorrow night and maybe I’ll actually be able to sleep it through.

For more on sleep and caregivers, check out this NIH article “It’s Been a Hard Day’s Night”, Sleep Problems in Caregivers for Older Adults. The AARP article I reference can be found at Tips for Better Sleep While Caregiving.

One of the biggest challenges about Parkinson’s Disease is the uncertainty of where it will go and what might happen next. That may also be a blessing in disguise.

As research continues and tests are being developed that can detect Parkinsonism, my question becomes when will it be possible to define the actual type of PD someone has? Will this new research allow medical teams to tell us whether our loved ones will be facing more physical or mental challenges as their disease progresses? Will we finally have a roadmap for the journey we are on? More importantly, would I want one?

One of the things I often complain about with this diagnosis is the lack of clarity for our future. We are told that the disease is progressive and that there are many possible outcomes, but no one can actually predict what will come next for us. Now, it appears that the body of research is finding similarities in the physical makeup of people who develop the different variants of Parkinson’s. Further research should lead to a better understanding of the disease, new and better treatments and even a cure. As they distinguish between characteristics of patients showing different symptoms, it seems that neurologists may one day be able to give a clearer prognosis to individuals when the disease is first detected.

My husband was diagnosed 14 years ago and we were given lots of frightening information about possible outcomes. It might have been helpful for us to know that he would face mostly physical challenges rather than cognitive, but I’m not sure that it would have changed anything. I don’t think I want to know if cognitive challenges beyond normal aging or hallucinations are in his future unless it comes with a proven plan for treating those symptoms. I guess what I’m saying is that not knowing is tough, but knowing might be tougher. Perhaps there’s truth in the old saying “what you don’t know can’t hurt you.” I think, for now, I like not knowing every turn in the road ahead as we continue our journey with Mr. Parkinson’s Disease.