Alzheimer's disease and dementia have been a part of my life for as long as I can remember.
My step-grandmother, Laurette—or Gram, as I called her—entered my life when I was two years old. Growing up, she was the grandparent that I had the most one-on-one time with.
I remember when I was 4 or 5, hearing the family talk about how Gram’s mother, Ma Mѐre, was in a nursing home. She didn't know who anyone was—not even her own children—and when she "spoke" it was just gibberish. At the time, I couldn't really comprehend how it was possible for a mother not to recognize her own children.
Over the years, I spent a lot of time with Gram. She lived alone in a house across the street from ours (her husband died of lung cancer when I was 5). Gram was my babysitter and even when my parents were home, I hung out at her house a lot because I'm an only child and there weren’t other kids that lived near us. I have fond memories of sleeping over at her house, baking cookies, and playing card games together.
When I was in grade school, Gram started showing early signs of memory loss. Having already seen her mother and older siblings rapidly decline with Alzheimer’s, she started on Aricept right away. It helped slow the progress, but she still continued to decline.
At the time, I was still young and I didn't really understand the extent of the memory loss. I'm embarrassed to admit I would sometimes take advantage—asking for an extra ice cream after dinner or a little spending money when she had just given me some the day before.
Eventually, my parents realized Gram would not be able to live on her own indefinitely. They built an addition on our home so Gram could have her own apartment, complete with a full kitchen, living room, bedroom, and a large deck and fenced-in area for her dog.
I spent a lot of time with Gram in her little apartment. We'd watch the Friday night TGIF television shows, play cards, or watch the Red Sox play ball.
Gram continued to decline a little bit at a time. For years, she had cooked family recipes such as her homemade meatballs, but her cooking started to taste funny because she would forget important ingredients or put in the wrong amounts. Eventually rather than cook for herself, she started joining us for dinner each evening. Each night when dinner was ready, I would run down to her apartment to call her for dinner.
Gram had always loved having a wood-burning stove. Growing up in Massachusetts, it helped ward off the chill in the winter. When my parents built Gram’s apartment, they installed a nice wood-burning stove for her—it kept the living room warm and cozy.
One night my parents and I returned home from grocery shopping to find the main floor of the house full of smoke. While my mother called the fire department, I rushed downstairs to Gram's apartment to check on her. She was sitting in her rocking chair reading the newspaper, totally oblivious to the fact the room was filled with smoke. We couldn’t understand how she could sit there in all that smoke and not realize anything was wrong. Years later, as more Alzheimer's research started coming out, we learned that a common early side effect of Alzheimer's disease is loss of smell. Needless to say, the fire was the end of Gram using the wood-burning stove.
Over the years, her symptoms of Alzheimer's disease continued to progress. Gram had always been fairly quiet and mild-mannered. But as the disease progressed, she would sit in her living room and swear a never-ending stream of obscenities at the television—words and phrases that would make a sailor blush. I remember coming home during a college break and standing slack-jawed for several minutes as she cursed and cursed at the television.
My parents stopped Gram's newspaper subscription. She still "read" the paper every evening because it was part of her daily routine, but she no longer retained anything, so it didn’t matter if she read the same papers over and over again.
After college, Dan and I had both moved to Virginia and we got married at the lovely Italian gardens at Maymont in Richmond. Gram was able to attend the wedding and appeared to enjoy herself, but I remember thinking that I wasn't sure she recognized some of the family members that were present.
Eventually, Dan and I moved to North Carolina. We were early in our careers and didn't have the budget or the time off to travel back to visit family as often as we would have liked. When I would try to talk to Gram on the phone, between her hearing loss from working in factories when she was young, combined with the advanced memory loss, it was nearly impossible to have a conversation with her, and eventually, I don't think she really knew who she was talking to.
Gram was fortunate that my parents work from home, so they were able to take care of her for many years longer than the average family might have been able to manage. Eventually, however, Gram would need round-the-clock care, and my parents had no choice but to move her in to a nursing home. Fortunately, my family had planned ahead, and she was able to qualify for Medicaid assistance: the cost of nursing home care in Massachusetts was over $10,000 per month. Gram died in the nursing home several months later.
On the other side of the spectrum, as of this writing, my maternal grandfather, Bob or “Grampa” will turn 95 next week. He has vascular dementia. If you're not familiar with vascular dementia, it's quite different from Alzheimer's disease. Vascular dementia involves brain damage due to impaired blood flow to the brain. It's frequently connected with strokes and mini-strokes. While he is frail, has COPD, and has frequent incontinence problems, we're fortunate that he has still has good moments or days, cognitively. But on other days, he may become extremely confused, have vision impairments, or hallucinate entirely and see people or things that aren't there leading him to say quite bizarre things, or not recognize family members.
Donna, my aunt, has been caring for Grampa in her home for a couple of years now as it is not safe for him to live on his own and he cannot afford to live in a senior community. Over his lifetime, Grampa had had a few different jobs, including working for 30 years at a hat factory. After 30 years of hard work, he lost his pension when the company went bankrupt. While he had managed to get by on his social security and another small pension, he certainly doesn't have the financial means to afford long-term care for any extended period of time.
Grampa served in the Navy during World War II. As a wartime veteran, we were able to obtain some veterans benefits to help with his out of pocket medical expenses. While the benefits are a big help, they are also limited and not enough to pay for enough in-home care services for an assisted living community.
Over the past couple of years, Grampa has had several hospital stays and rehab stays for various ailments and hip breaks and his caregiving needs have steadily increased. Planning ahead for the possibility that Grampa may eventually need more care than she may be able to provide, Donna placed his name on the wait list for a popular veterans nursing home in the area.
In the meantime, Donna became more and more stressed and exhausted as she juggled her full-time job and Grampa’s ever-increasing caregiving needs. As happens in many families, Donna is the one sibling who provides 95% of Grampa’s caregiving, with minimal support from her other siblings, for various reasons.
At her annual physical, Donna’s doctor raised concerns about her blood pressure being high after years of being on the low end of normal. More concerning, the doctor discovered cancer that that could have been discovered sooner if she hadn't postponed her appointment due to a health crisis my grandfather was having at the time. Fortunately, the cancer had not spread significantly, and it was removed successfully.
Grampa was in the midst of another rehab stay when Donna got a call that he had been approved by the VA for a home health aide to provide in-home care assistance four days per week. The in-home care would give Donna some much-needed help in the mornings, so she could get to work on time, rather than spending hours getting Grampa up, fed, and bathed and cleaning up the near-nightly incontinence messes.
But a couple days later, while Grampa was still in rehab, “The Call” came. Grampa’s name had come to the top of the list at the VA nursing home, and they expected to have a room for him soon.
Donna called me on the phone sobbing, as the realization struck her that my grandfather might not return home after rehab. She felt a sense of hope and relief, mixed with fear and uncertainty about whether it was in my grandfather's best interest to move to the nursing home.
Donna called me again the next day after touring the VA home, including the section where Grampa would be located. “I don't know,” she said. “The home is great—It's brand new, everything is clean and new. It's a really nice set up where they are in ‘neighborhoods’ of 8 rooms to a neighborhood. Each resident has their own private room, and they have a shared living room, and they eat meals together with their neighborhood. But for some reason I just didn't get a good feeling about it.”
We talked it through further. I asked her whether she was struggling because it's uncomfortable to think about moving my grandfather to a nursing home, or was there something specific about the tour that was causing her doubt?
As we talked it through, she realized she was concerned Grampa wouldn't have enough social interaction. When he’s been in rehab, Grampa has always been one of the nurses’ favorites. He always has a good attitude, he cracks jokes, and he sings. He's also always been a huge flirt and a ladies’ man, so he loves chatting up the nurses and complimenting them. The rehab staff and nurses love him and stop by regularly to say hi to him.
During the tour of the nursing home, Donna didn't really see any signs of staff in the neighborhood where my grandfather would be residing. The other residents who live in what would be his neighborhood were virtually non-responsive and living in motorized wheelchairs due to significant brain damage. When Donna called the nursing home administrator to ask about the lack of staffing, the administrator was somewhat dismissive and indicated that staff members are placed where needed, and Grampa’s would-be neighborhood doesn’t need much hands-on attention.
After talking it through, I suggested Donna should probably listen to her gut and what she thought would be best for Grampa. We had a frank discussion about the difference between someone in Gram's situation versus someone in Grampa’s situation. By the time Gram moved in to the nursing home, she was so far progressed with Alzheimer’s she didn't really know where she was. Most of the time, Grampa is aware of his surroundings. (He's also aware of how much Donna does for him, and when he’s lucid, he thanks her profusely. Those little moments seem to help keep her going.)
Since Grampa had been in rehab while she was considering her options, Donna hadn’t had a chance to try out the home health aide to see if that arrangement would provide enough support to make keeping Grampa at home sustainable. She felt she should at least try this option before deciding to move Grampa into a nursing home. The risk, however, was that if she passed up this opening at the VA home, and Grampa's health were to suddenly change, the nursing home may no longer have an available room for him.
Donna decided to pass on the nursing home, feeling that it just wasn't the right fit for my grandfather's needs. Grampa returned home from rehab, and the home health aide started the following week. While they still have many difficult moments and days, the home health aide has made my aunt's morning routine much less stressful, and she's able to get to work on time, which has made a huge difference in her stress level.
Grampa is like the proverbial cat with nine lives. Over the years, he’s had various close calls, but he continues to rally. For now, we just take things one day at a time.
As a founding member of the National Alliance of Attorneys for Alzheimer’s Planning (N3AP), I have teamed up with my colleagues to write this guide. We hope it will help families better understand Alzheimer’s disease, the various care providers and assistance that are available, and the importance of setting up proper legal planning as soon as possible to avoid future legal and financial headaches and the family tension those headaches can cause.
If you’d like to know more about me, my journey into Alzheimer’s Planning, and the founding of The Alzheimer’s Planning Center at Carolina Family Estate Planning, I share more of my personal story here.