When my parents moved to a duplex we thought we had it all figured out for their later years: finances, housing and medical care. Unfortunately, things rarely turn out the way you plan them.
A few years after leaving the family home, my father started showing the first signs of Alzheimer’s disease. To complicate matters, my mom had more and more mobility issues and relied entirely on a scooter and a walker to get around. At the beginning, we had a lot of hope that my father would be able to take care of her in a quasi-assisted living environment. His diagnosis and diminished independence changed all that.
Looking back, you see the signs. For years he enjoyed driving to the local forest reserve for long walks. Suddenly he would find himself lost and could not find where he parked. With my mother unable to stop him from doing something he loved and unable to prosecute him, strangers called to tell him he had been found and helped him get back to his car. And there were a lot of other disturbing things going on, like leaving the stove on, leaving the house and forgetting why, and becoming increasingly frustrated with the growing limitations of the disease.
Like many families in this situation, we never thought that Alzheimer’s disease would happen to us. But when it happened, we all knew the future was going to be very different than we had imagined. We felt a frightening sense of urgency to do something, anything, to make us all better able to deal with this unforeseen future.
My mother, although sane and steadfast in her resolve, began to fall frequently due to her multiple sclerosis. 911 responders were becoming familiar visitors to their homes, which only added to our concern and sense of urgency to find a safer, more permanent solution. We knew we had to start looking for a place for them as soon as possible. But how do you find the right place? Everywhere seemed too expensive, too fancy or too far away.
And once you move them to a new city, you need a new system of doctors, along with transportation, pharmacies, and a new system of social support. Worries Cascade: How do you find the right caregivers and believe they have your parents’ best interests at heart? How will you get them to the doctor after they can no longer drive?
Concerns increased and there were few professionals or organizations to help at the time. You can search the Internet, but the options are limited.
We relied on recommendations from family physicians, friends and co-workers. Then we searched the old-fashioned way: countless phone calls and interviews with staff from the few assisted living centers in the area. We also appealed to the local council for the elderly. Eventually we found a place in a nearby suburb that seemed like the best alternative to their duplex. But it forced my dad to lose his home, his garden, and the company of his beloved cat.
The move changed her life completely – literally overnight. It was then that his Alzheimer’s symptoms worsened considerably. He went from the initial stage to the middle stage in just over three months. We were losing him quickly and it was terrifying. Before, we thought that nursing home care was at least five years away. Suddenly it was here now.
Statistics say three years is all you need in long term care. My dad was in full time nursing for six good years. We spent almost $ 7,000 per month on both of my parents, $ 4,000 more than we had carefully planned. I knew about long-term care planning, but I was not prepared for it.
But helping my dad with the finances was complicated. As Alzheimer’s disease caught up with him, he became paranoid about his finances. He forgot that I was an investment professional and he didn’t want my help. He didn’t want to give me access to his investments or the bills that needed to be paid. He didn’t let my mom help him either, even though he tried to teach him a bit before Alzheimer’s disease progressed.
One of the most difficult options that seemed to present themselves was to sue my father to establish trusteeship and have him declared incompetent. The whole experience was terrifying for me. And upsetting for my mother. Fortunately, we bypassed this road. Soon, my father’s waning awareness caused him to worry less about his finances and stay in control.
I was worried about my mother. She did a fantastic job taking care of my dad, but I knew she was neglecting herself. Once he passed away, focusing on her just got easier. But swapping the roles of parent and child is never easy.
Parents don’t want to be a burden on their children. As they age, they give up control of almost everything: their finances, their health and their choices. It is difficult for everyone, but especially for parents who are most comfortable being the ones you depend on and not the others.
As a child, you take it because you love it and that’s what you want to do. I was like, “I can’t start repaying you for what you did for me, so let me do it for you.”
That doesn’t mean they’ll be okay with it.
Everything becomes a power struggle. My mother would often say, “Remember, I am the mother. And even though I knew she wasn’t able to be the mother, I had to bite my tongue. You have to learn to communicate in a completely different way. You can’t bark commands, but neither can you let things pass, like neglecting hygiene or not taking medication.
Over and over I had to remind myself that I had to be the adult, not the child, especially since I sometimes wanted to cry, stomp and do whatever I wanted. Communicating with my mother was a balancing act between restraint and perseverance.
Planning for old age is a conversation no one wants to have, but trust me, it’s something you have to do. No one wants to talk about when they’re going to die, but it’s not an “if”. Legal and financial considerations abound. Make a list.
Everyone should have at least one will, one health care power of attorney, and one power of attorney for property. If your parents don’t have one, this is a great way to start the conversation. Once this hurdle is cleared, ask to be introduced to the lawyers and participate in the conversations.
Plus, talk about catastrophic illness when planning. No parent wants their children to be tasked with picking up the pieces in the middle of a health crisis without any preparation.
All roads ultimately lead to financial preparation. Talk about what will happen if funds run out and care is still needed. Typically, when retired parents run out of money, they end up on Medicaid. If the kids have the capacity, they pool their money to provide their parents with a nicer room in a Medicaid facility. They help pay for entertainment, clothing, maybe a short trip. Many of these facilities will not kick them out once they are on Medicaid, but some will. It’s scary, because people are living longer as medical bills go up, and not having enough money to get into a facility really limits your options.
One piece of advice I would have given myself at the start of this trip is to choose the battles. Let your parent have as much choice as possible. They have a truth in their heads – it doesn’t have to match yours. And they need a little bit of control.
Often the battles between adult children and aging parents boil down to their own frustration and vulnerability. It has nothing to do with the child. But it’s hard to embrace this truth when you’re in the middle of it.
Second, use your resources. There are a lot of them (a lot more than when I was going through the process). Check out resources such as the AARP website, local seniors’ councils, as well as major social service organizations. And other people you know who are in the same boat are also seen as a great resource. You don’t have to create a formal support system. Just talk it out and find someone you can bond with. When you’re there, sometimes you feel like it’s going to go on forever, and it’s nice to know you’re not alone.
Finally, find peace by improving things a bit. We’re so uncomfortable with aging and dying in this country – it’s doing us all a disservice. I could never do enough to make my mom’s life the way I wanted it to be. I was not that powerful. I had to let go and make peace with the fact that I was doing all I could to make the ending better. It’s hard to do. You cannot fully prepare for it. You just have to be careful and appreciate the moments that are left to spend time together. And when the end comes, you step into a new chapter of adulthood. You put away your parents’ earthly possessions, you collect your memories and move on.