Adjusting to Parkinson's--and Early Dementia

This week, we are fortunate to have Carol Marak as guest blogger. She is a contributor for the senior living and healthcare market, advocating for older adults and family caregivers. Carol  writes on tough topics like chronic issues, senior care and housing. Read her work at AssistedLivingFacilities.org and SeniorCare.com. Find her on LinkedIn and contact her at Carol@SeniorCare.com.

Until recently, my family had little exposure to Parkinson’s disease. We lived with Alzheimer’s because, at the age of 85, Dad received the dreaded diagnosis. Even though he passed eight years ago, I think about the last years of his life with a soft heart. It’s a friend of mine that received a Parkinson’s diagnosis over fifteen years ago. I’ve known her for twelve years and during most of them, I could hardly recognize her illness. The only glaring symptom was the inoperability of the left arm. Other than that, Ellen managed very well.

Over the past year, her family is worried because they see signs of mental decline, and since Ellen lives alone, it adds pressure to their worry. Mine too since I live next door and see her every day, and she’s like family to me. Ellen taught me to sew and to paint pictures of flowers using her unique watercolor techniques. Always fun and ready for a new adventure, but Ellen is changing now.

I don’t know a lot about Parkinson’s. However, I do know how dementia affected my Dad’s life. Even though Ellen is extremely independent, that’s no longer the case, and she faces dependency. That’s the hardest thing for her and her family to accept.

At the time of her diagnosis, Ellen experienced many sleepless nights. Often, she’d tell me how she stayed up all night or would get up and read until the early dawn. I never understood why it was a common topic of our talks. At the time, I didn’t know this was a symptom of Parkinson’s, and I guess she was gauging her decline through the sleepless nights. Six years later, she’s complaining about:

• Losing focus
• Unable to annunciate
• Hallucinations at bedtime
• Even depression and irritability

Believe me, this is not the Ellen I know. There are times in conversation that she forgets names, even her grandchildren’s which is tragic because they are her life.

Unfortunately, shortly, I’ll lose my dear neighbor. Her house is on the market and a move to a nearby residential care home is near. Like my dad, Ellen concedes to the housing change since her fall. She broke her clavicle. I remember how my Dad resisted moving from his home. He didn’t agree to it until after his fourth emergency trip to the hospital when he fell and broke his hip. That was the deciding factor.

Like most family caregivers, the first step in searching for assisted living is understanding the types of care a loved one requires. In Ellens case, she needs a lot of help with all everyday tasks like ADLs and IDLs (activities of daily living and instrumental tasks of daily living.) For example, at the beginning my Dad had trouble with dressing and incontinence. But over time, he needed help with bathing, feeding, walking, and finally, with transferring.

As for Ellen, she needs help with all of them since her shoulder is strapped in a harness. But after recovery, she’ll continue to need help with mobility, bathing, meal preparation, and some transferring, I believe. Her occupational therapist suggests moving to a home that can assist with all ADLs and says to look for the following assisted living room design when touring. The best room space for Ellen:

• Find a room with plenty of space to move around in and to position furniture with wide spaces in between.
• Avoid using extension cords.
• Use chairs with straight backs, firm seats, and armrests. These help with transferring and getting in and out of them.
• Install handrails along walls and hallways where there is nothing to hold on to.
• Install a stationary pole to help her get in and out of bed. .
• Install an elevated toilet seat and position handrails to help her stand up or sit down.
• Replace regular faucets handles with extended levers since she has trouble grasping and rotating.
• Put handrails in the walk-in shower and place a non-skid mat in it.

These are all simple fixes and adjustments. What worries me most is her adjustment to decline. It seems to speed up now and Ellen’s doctor keeps high hopes for her new life, which she’ll need as she becomes more dependent.

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