Caregiving, The Next Level

Mary’s mom is going into an Assisted Living Center next week. Mary did her homework and finally settled on the best possible place within her budget. Her days of heavy lifting and sleepless nights are over. “I love Mom,” Mary told her sister, “But I just don’t have the strength to do everything that Mom needs anymore.” Yes, Mary knows it is time, and the best thing for Mom too. But it makes Mary feel empty. Lost. Useless. Of course, she will visit and keep her mom company. And Mary knows that the paperwork and financial responsibilities remain. But Mary feels as though she is losing a very demanding job—and one that all in all, she did well. She will no longer be a caregiver.

Wrong! Mary’s duties will change, but she still has an important, and often time consuming, caregiving job. It is common knowledge that patients in care facilities who have a family member involved do much better than those who don’t. If you have a loved one in a care facility, here are some of your many tasks:

Social director. With multiple patients, care staff often have little time for for being social. Facilities usually offer group activities, such as singing, crafts, even cooking, but one-on-one contacts are the ones that are best at keeping a person alert. That’s your job. And it can be a fun one. Once again, you get to be family, instead of caregiver and patient. Also invite friends and family to come visit. As family caregiver, your are the most important visitor, but others add variety and fun.

Observer. Come at odd times to the facility to check on care. Is s/he being moved regularly if s/he can’t move easily? Are there any unexplained red spots or bruises? (See last week's blog) Are any treatments being done properly? Is s/he being taken out for exercise, social events, etc.? Are needs (bathing, toileting, dressing, etc.) being met in a timely manner? Is s/he being helped with feeding in a way that works for him? How do the various staff interact with him/her? When you see something that isn’t working, talk to the staff. You’ll get best results if you ask assuming that they care about their patients and will work with you to fix the problem. Usually they will. If they don’t go to their boss.

Medications manager. Usually there is a facility physician who is in charge of this. But it is your job to review your loved one medications regularly and ask questions. Insist that no changes be made without consulting with you first. Be very aware that during a hospital stay, medications may be dropped. If they aren’t added back upon your loved one’s return to the facility, ask why. Be especially diligent when important staff changes happen. Your loved one’s care can get lost in the cracks.

Case manager. The facility usually has one of these too. Even so, request that they consult you about any major changes to your loved one’s care. Also, you will probably still have to make doctor’s appointments and get your loved one there. Always go with--don’t leave this to staff. You still must take care of many of the insurance documents and other legal papers too. Then there are the errands to run for things that just make your loved one’s life more pleasant—lip gloss, new underwear, a book.

Emotional supporter: This doesn't change—and it is perhaps the most important task of all. Your loved one still needs your attention, your loving words. Your are the stability of their lives, the connection between what is and what was. Make a point of touching, hugging and kissing. Yes, the staff touches a lot, but it usually, task oriented. Your job is to initiate caring oriented contact, to listen, to be a sounding board for complaints, a shoulder to cry on, and a friend to laugh with.

For more information about Lewy body disorders read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders