I recently went to the funeral of the last person in my Alzheimer’s support group to die. When we and our spouses stumbled through the dark early days of trying to figure out where to turn for support and information, we formed a club that no one ever chooses to join: the Alzheimer’s early-onset support group. We’d meet together in one room with a group facilitator and celebrate birthdays and anniversaries, and tell travel stories before breaking into two groups: 1) the memory loss group and 2) the caregiver group.

The memory loss group usually did an activity like an art project, led by someone trained in Memories in the Making™, or had a discussion on a topic such as why they were angry about the car keys being taken away. The caregiver group vented until the inevitable tears would fall, and we’d support each other with tips about how to go out to eat with your loved one, whether to sleep in the same bed and continue to have sex, or how to get through airport security without your loved one freaking out.

The group no longer meets because our care partners are all gone. They’ve all died from the disease that claims the lives of about 84,000 Americans each year. So, the next question is “what happens when you are no longer a caregiver and you can begin to carve out time for yourself again?”

Life after caregiving seems broad and vast. There is so much time to fill. Figuring out how to fill it can be a challenge or a breath of fresh air. It all depends on the disposition of the person, and the number of years spent caregiving. Someone who has been a full-time caregiver for 10 or 15 or 20 years will have a more difficult time than someone who has been a caregiver for one or two years. Or, maybe not. Maybe after being a caregiver for so many years that person has already decided what to do with the rest of his or her life. Or, maybe that caregiver has lost her identity and feels lost and lonely, and that life is meaningless. Or, maybe another caregiving situation suddenly appears.

My friend, whose husband died last week, knows she wants to go back to school. “Since Paul was so involved in education, I feel driven to get another degree,” she told me.

After the caregiving ends, people experience a wide range of emotions including relief, sadness, grief, emptiness, and loneliness. Some people feel like exploding and letting out all the anger and grief that was bottled up during the time they spent caregiving. Some people feel at peace, knowing that they did everything they could for their loved one. Others look forward with excitement and eagerness to turn the page and write a new chapter of their life.

Whatever you feel, it’s okay. You might need professional support or to lean on the shoulder of a best friend. It’s a new day, and the world is yours to shape in any way that you want to.

For more information on the topic of post-caregiving visit www.aftergiving.com andwww.caregiving.com

Scientists at Georgetown University have found a way to determine if a person has a good chance of developing Alzheimer’s disease within three years. The test was identified in a preliminary study involving 525 people aged over 70. The work identified a set of ten lipid metabolites in blood plasma that distinguished with 90% accuracy between people who would remain cognitively healthy from those who would go on to show signs of cognitive impairment.

The latest study, which is published in Nature Medicine, was led by neurologist Howard Federoff of Georgetown University Medical Center in Washington DC. He and his colleagues tested the participants’ cognitive and memory skills, and took blood samples from them, around once a year for five years. They used mass spectrometry to analyse the blood plasma of 53 participants with mild cognitive impairment or Alzheimer’s disease, including 18 who developed symptoms during the study, and 53 who remained cognitively healthy. They found ten phospholipids that were present at consistently lower levels in the blood of most people who had, or went on to develop, cognitive impairment. The team validated the results in a set of 41 further participants.1

“We don’t really know the source of the ten molecules, though we know they are generally present in cell membranes,” says Federoff. But he proposes that concentrations of the phospholipids might somehow reflect the breakdown of neural-cell membranes. Federoff emphasizes that his results will have to be validated in independent labs, and in much larger studies: “We also have to look at different age groups and a more diverse racial mix, and we need longer study periods.” 1

What are the pros and cons of learning that you will probably succumb to Alzheimer’s disease?
Pros:
1. It gives you time to get things in order, including financial and interpersonal affairs.
2. You might make an extra effort to check things off your bucket list.
3. When the blood test becomes available, there might be drugs available that do a better job of staving off symptoms of the disease, that you could take advantage of.
4. A positive test result would allow you to participate in a clinical trial that might help you personally, and might also change the future for other Alzheimer’s disease patients.
5. Learning that you might develop Alzheimer’s disease could provide the impetus to live as well as possible by exercising, eating a nutritious diet, and reducing bad habits such as smoking and drinking too much.
Cons:
1. Learning that you will probably start losing your mind could have a negative impact on your emotional and mental well being.

Reference

1. Mapstone, M. et al. Nature Med.http://dx.doi.org/10.1038/nm.3466(2014)