My friend's eyes' filled with tears as she told me the latest on her mom, "She keeps accusing me of stealing her things! Yesterday she said I came into her room and took her socks off while she was asleep." She smiled wanly. "It would be funny if it weren't so terribly sad." I gave her a hug and we finished filling up our coffee mugs at the restaurant's drink station. I listened for the next thirty minutes while she went through they symptoms her mom was going through which included some of the more classic signs of early Alzheimer's: mood swings, misplacing things, unusual wandering at night. For the past year, Jennifer had been caring for her mom, first in separate households, but more recently she moved her mom into the guest room of her own apartment so she could keep an eye on her. Even though Jenn was a very competent and compassionate orthopedic nurse, this was completely different from what she had learned in school. Having her mother accuse her and be angry with her stirred up a deep sadness, one that acknowledged that the mom she had known all her life was slipping away, being gradually replaced by an unfamiliar lady that occupied the same physical space. It was unsettling and made her wonder out loud if she knew anything at all about Alzheimer's. Having our loved ones experience any serious illness can make us question our own professionalism since we often feel that we should be able to cope with any sort of medical crisis. Alzheimer's or any type of dementia can be particularly trying since it usually involves a long term mental and physical decline that presents unique challenges to the caregiver. Jennifer outlined a few of those: caregiver exhaustion, depression and discouragement. As a Parish Nurse, I work with people in an ongoing Caregiver Support Group. I encouraged Jenn to attend and also suggested some books she might read that would help her reframe her experience from the more familiar mastery that exists in being a professional nurse to the more vulnerable role of daughter and caregiver seeking answers and help on a long journey. I shared with her some of the more difficult trials we discussed in group. Second Guessing Decisions Members of the group express frustration with all the various options for care and with the sense that they are never sure of having done the right thing. An example is the decision not to do a tube feeding. They talk about how that is the easy part-it is harder making decisions about changing food texture, how and when to hand feed their loved one, food refusal and how to react when choking becomes more frequent as the disease progresses. Sleep Disturbances Missing one night of sleep occasionally can be disruptive, but OK. But having every night disturbed leads to excessive fatigue, lack of ability to cope with daytime duties, and depression-for caregivers and for their care recipients. Working with medical professionals to find helpful routines, drugs and respite care can be a partial solution, but chronic loss of sleep may be the #1 hazard of family caregiving. Family Disunity Sometimes people just don't agree on what to do. And very often one family member is left to do the lion's share of the work-bills, doctor's appointments, taxi service, advocacy. If other relatives participate, it can often be hard to coordinate and variety is not the spice of life for a person with memory issues. Making Decisions About Treatment For Co-Morbidities When a dementia patient has advanced heart disease, or their diabetes is out of control because they eat too much sugar, or their routine preventative medicine is due, or they need a joint replacement but rehab would be a real bear-these decisions get complicated. Deciding they are a DNR might be a first step, but there are lots of steps on the road between onset of memory loss and the time when the DNR decision goes into effect. Guilt. Guilt. If sleep deprivation is the #1 hazard of family caregiving, then guilt is the #1 feeling associated with it. Because caregiving is often so intense, decisions must be made and life set into a series of priorities. When finances enter the picture, options can be further limited. The caregiver may feel squeezed in a vice grip of life-stuck between spouse, children, grandchildren, work, time for self-renewal and worship, caring for their own physical bodies, and having some fun. Seeking to maintain a spiritual balance, a life-focus, can become the greatest challenge. After a second cup of coffee and some time to vent, Jenn's eyes cleared up, her shoulders seemed to release some of the tension and she leaned back in the booth. "You know what's hilarious? Mom keeps loosing her underwear! I can't find it in her drawers or in the trash can. Where do you suppose she is stashing it?" We both shook our heads in unison and laughed until we cried. Joy Eastridge 3 Down Vote Up Vote × About jeastridge, BSN, RN (Columnist) Joy has been a nurse for 35 years, practicing in a variety of settings. Currently, she is a Faith Community Nurse. She enjoys her grandchildren, cooking for crowds and taking long walks. 83 Articles 560 Posts Share this post Share on other sites