When a person succumbs to any form of dementia, it is hard on family and friends. It is difficult to see the diminished capacity of a loved one and the unbearable frustration it brings. However, one of the worst things we have to cope with is the fact that this person has a flawed memory, and this flawed memory can cause them to tell others terrible things about us, simply because their brain isn't working correctly. No matter how far-fetched their stories and accusations may be, to them, what they are saying is true.
Dear Carol: My mom moved into the memory unit of an assisted living last year and she loves it. She’s very social so this environment is perfect for her. Now, my brother has suddenly decided that he wants Mom to come and stay with him for the winter since he lives in a warmer climate. He’s the man so he has the Power Of Attorney. Mom doesn’t want to leave her comfortable little apartment, but she’s said if he really wants her there for a time, she should do it. My fear is that the move could make her dementia worse. My brother says he just wants to spend more time with Mom, but he's never been that close so the only true motivation that I can see is that he knows how expensive AL is and he’s struggling financially. I think that he wants to save the estate money. I’m not trying to keep Mom in my town to be selfish. I just want her happy. How do I handle this? – SD
..Your siblings don't show up at the door to visit Mom. They don't offer to take Dad to doctor's appointments. Heck, they don't even know the doctors' names. They don't know the medications. They don't care about the elderly parent's temper tantrums you, the caregiver, must weather. They don't care that you are the target for verbal abuse from the Alzheimer's afflicted parent. And they really don't care that you haven't had a break from 24/7 responsibility, whether hands-on or helping with all the needs of an elder in assisted living or nursing home, for weeks, months or years. They voice huge concern for the elder, yet they aren't willing to get their hands dirty (figuratively or literally), or open their wallets to help.
While Alzheimer’s disease will progress differently for each person, scientists and clinicians have attempted to stage the disease as a way that helps people living with Alzheimer’s and their families understand what is happening, as well as to plan for the future. Some divide AD into seven stages, some five stages, but currently, three stages is the format most often used. The Alzheimer’s Association uses three stages, so that is what we will use for our foundation here.
When a beloved elder dies, we may have varying reactions, frequently changing moment by moment. Naturally, there’s grief and the realization that we’ve seen the last of our loved one’s physical presence. Often, however, if the death follows a long illness or significant pain, we can also feel a sense of relief that their suffering is over and we can get on with healing. It’s often the in-between time - the caregiving years - that are the most difficult to label. Both of my parents endured long, slow declines with significant pain before their deaths. However, my dad’s decline was one that many caregivers of those with dementia will relate to.
New rules for the protection of nursing home residents have been implemented as part of the Affordable Care Act (ACA). Many of these rules provide answers to concerns that have troubled families with loved ones living in skilled nursing facilities (SNFs), generally called nursing homes. I emailed Medicare expert Ginalisa Monterroso for an update on these rules and what they mean for nursing home residents and their families.
Fearing that their aging parents could be injured, caregivers can become nagging nannies who try to stop Dad from working in his beloved shop or Mom from gardening. But insisting that elders avoid all risks can compromise their dignity and joy. So how do you find the right balance of concern and trust?
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman
Finances can be a difficult topic to discuss in some settings, and talking with aging parents qualifies as one of those. But it’s essential that families discuss finances and how they will be handled when — not if, but when — one of them becomes incapacitated physically or mentally. Wise people appoint a trusted person as power of attorney (POA) before there is a health crisis. In the case of caregiver Marianne Sciucco, author of Blue Hydrangeas, an Alzheimer’s Love Story, the legal documents for her parents were signed in time — barely.
“At Senior Lifestyle Advantage magazine, we speak to those who are 55 and older, encouraging them to live a healthier, more balanced life with hope. Each issue shares expert advice, easy recipes, travel, and feature stories about living with joy.”
These words are the short version of the message that Judith Stanton, founder and publisher of Senior Lifestyle Advantage, wants to spread. Stanton’s magazine focuses on the ways in which aging can be positive and fun, a viewpoint that is sorely needed at a time when ageism marginalizes a large percentage of our population.
Dear Carol: As my parents aged, we all thought that we were taking care of the legal issues necessary so that I, as Durable Power Of Attorney (DPOA) could handle anything that came along with their finances. Dad died two years ago, and Mom and I got through it. Now, Mom’s health is failing. She wanted me to change the account where her Social Security is deposited, so I called and found out that the DPOA would not allow me to do that. Fortunately, Mom’s memory is still good, so she was able to go to the attorney with me and she had me assigned as Representative Payee. The attorney told us that if Mom had a health issue where she couldn’t have answered the questions needed, I wouldn’t have been able to make the necessary changes. For us, that would have been merely inconvenient, but some people could have more important reasons for making these changes. Your column seemed to be the best way that I could think of to get the message out. Thanks for providing a great service. Janice