Category Archives: Support for Caregivers

Posts mention resources and suggestions that can help caregivers stay healthy.

Forty Winks to Fight Dementia

A gift doesn’t excite me much, unless it’s something truly heartfelt or desperately needed. This week I got an incredible gift of the second type: two nights of deep, restful sleep. I never thought sleep would mean so much to me.

Between the Pond and the Woods

Don’t horse around! Get some sleep!

I have written about sleep research before, but sleep is much more meaningful when you actually get some. This week I was having a surgical procedure, so I forced myself to bed early to help my body prepare — and then recover. My sister was back on caregiver duty so I wasn’t doing extra labor for my mom. It’s impossible to put worry out of my mind for two whole days, but I tried to minimize it. Two nights of deep sleep really took the edge off my anxiety.

A New York Times article by Maria Konnikova quotes sleep researcher Maiken Nedergaard as saying, “Sleep is such a dangerous thing to do, when you’re out in the wild. It has to have a basic evolutional function. Otherwise it would have been eliminated.” Konnikova suggests that in the era when humans were living out in the natural world, sleeping would have put us at risk of “death-by-leopard-in-the-night”, something caregivers might understand. We know that when loved ones get agitated or hallucinate at night, they can create chaos that seems as dangerous as any untamed animal. But we put ourselves in danger, too, when we fail to rest our brains.

A range of studies have turned up data showing there is greater risk of Alzheimer’s disease in older adults with insomnia. The National Heart, Lung and Blood Institute has also published research linking lack of sleep to spikes in the hunger hormone ghrelin which may lead to overeating and weight gain. It’s no wonder that caregivers often end up fighting so many personal health problems — dementia can make sleep a rare commodity.

If you’re sleeping badly on a regular basis, here are some ideas that may help you get better rest. Try at least one of them, as a gift to yourself.

  • Leave all iPhones, laptops or electronic devices outside your bedroom. Nothing ruins my sleep plans like a late night email … which leads me to web surfing….that never ends when it should.
  • Set and enforce a real schedule for going to bed and getting up in the morning. Try to stick to it for at least three days and see if you rest better.
  • Resist TV for thirty minutes before you close your eyes. Televisions give off light that lowers levels of melatonin. If you need a distraction before bed, try music instead.
  • If anxiety is keeping you awake, use paper and a pen to banish it. Write your fears and worries in a small notebook for no more than 15 minutes. Then close the book (literally) and put your problems away. In most cases, there is nothing you can do to resolve thorny issues at 11 pm, so give yourself permission to stop fretting and start sleeping. You can always go back to the worry wheel tomorrow.

Sleep is essential because it appears to be the period when our brains clean themselves of accumulated waste. This garbage includes amyloid, a protein linked to the development of Alzheimer’s disease. In the NYT article, Dr. Nedergaard offers a metaphor for the role sleep plays in our lives. She tells us to consider a fish tank, “If you have a tank and no filter, the fish will eventually die.” When we sleep deeply, our cerebral cleaning system has a chance to filter the trash out of our brain so we can resume healthy lives in the morning.

It is so rare for me to sleep long and deeply twice in one week. But today I really feel the difference. The wound from my surgery is not throbbing the way it did after the procedure. My thinking is very clear and my mood is good, despite the fact that it’s a grey, rainy day. I know that the problems that tortured me last week still need solutions. But a clear mind can solve problems way better than a tired one. If you want to give yourself (and your family) a real gift, do something tonight that increases your odds of getting forty winks.

Legal Matters for Caregivers

I hate writing about legal issues for caregivers — I get nervous just thinking about them. But if you’re a caregiver now, there are good reasons to feel anxious. Can you confidently predict who will be there to care for you in the future?

Between the Pond and the Woods

Will you be revered and cared for like this 100 year-old bonsai?

In my case, the answer is no. I have no idea who will look after me if I develop my mother’s  vicious form of memory loss. My partner enjoys good health, but he is older than me and pretty lax about planning for the future. I don’t have any kids and, though my sister is younger than me, we could conceivably have dementia at the same time if we follow my mother’s pattern.

Naturally, we are hoping that Mom’s type of dementia — which is rare and has no family trail — will skip over us like one of those bad storms that dropped a foot of snow elsewhere. But we need to plan as if it will happen in order to protect ourselves in case it does.

Many of us may encounter trouble just by living to the age of 80. According to statistics from the AARP Public Policy Institute, there are currently seven caregivers for each person who’s reached the age of 80 or older. However, given our country’s lower marriage rates and smaller families, by the year 2030 there will only be four caregivers for every person who is 80 or older! If you spin the statistical data out even further, it only gets worse. By 2050, there will be just three caregivers for each person over the age of 80.

So what can you do to ensure your wishes will be followed if there is no family caregiver looking after you? Please start drafting an advance directive that will give health care providers a list of your decisions about the treatment you want. It’s also important to create a living will that gives health professionals (and family members) a map of how to implement your treatment preferences if you lose competence or consciousness. The link above leads to documents for the state of Pennsylvania, but if you live in another state, you can probably find a similar resource on your state’s website.

You probably would prefer for treatment decisions to be carried out according to your wishes, rather than imposed by law. Recent incidents like the extraordinary case of Marlise Munoz — who was brain dead, pregnant, and put on life support — illustrate how family members and health practitioners can face terrible conflicts when a patient loses consciousness. You’re not likely to end up in a situation that complex, but you still want to provide a clear set of directions to be followed if you lose the ability to speak for yourself.

Morbid thoughts do not contribute to restful Sundays. But busy as we are, we need to take a few hours to think over such matters and start to draft these documents. If my mom hadn’t thought ahead and planned for every eventuality, my caregiver experience would be much, much harder. Caregiving is already a huge emotional challenge. If I had to answer some of these care questions on her behalf, I’m not sure how I’d manage. I don’t want her disease, but I definitely see the value of following her example.