As an unpaid caregiver, you commit time, energy and compassion to the ones you love who are living with Alzheimer’s. Chances are you’ve also had to cover some care costs out-of-pocket. Because you are a caregiver you might qualify for some tax benefits from the IRS. Though tax rules can be complicated and are subject to change, here are some expenses you might be able to write off. Talk to your tax advisor or accountant to learn more.
Medical expenses. Your loved one living with dementia may be considered your dependent for tax purposes. If this is the case you may be able to deduct their medical costs. Typically you can only deduct medical and dental expenses that are more than 10 percent of your adjusted gross income, but if you or your spouse were born before 1952 you maybe able to deduct medical expenses more than 7.5 percent of your adjusted gross income.
Note: Only expenses not reimbursed by insurance can be deducted.
Medical fees from doctors, laboratories, assisted living residences, home health care and hospitals
Cost of prescription drugs
Cost of transportation to receive medical care
Home modifications costs such as grab bars and handrails
Personal care items, such as disposable briefs and food
Dependent Care Credit. If you paid someone to care for the person with dementia so you could work or look for work, you may be able to claim the “Child and Dependent Care Credit” on your federal income tax return. If eligible, you would be allowed a credit of up to 35 percent of your qualifying expenses, depending upon your adjusted gross income.
You must have earned income
The person with dementia must be unable to physically or mentally care for him or herself
The person with dementia must be claimed as a dependent on your tax return
Flexible spending account. If the person with dementia is a dependent under the tax rules, you might be able to use your own workplace flexible spending account (FSA). This money can cover the person’s out-of-pocket medical costs or dependent care expenses in some cases.
For more information on deductible expenses and exemptions for caregivers, visit these links:
My Dad was a hard-working and career-driven man for the majority of his life. Even though he had a successful career, we would spend every weekend together when I was younger exploring the City of Chicago and trying different ethnic foods and exploring the many diverse neighborhoods. Every weekend was an adventure for us. One of our favorite things to do was eat Chinese take out, and go bowling every New Year’s Eve. I will always remember his patience and kind way of living, and the true joy and laughter he shared when we were just doing the simplest of things together. He was a wonderful father, and we loved each other very much. Through the best and the worst of times, we stuck together finding comfort, joy, and encouragement in each other’s love. I will also always remember his strength and perseverance, and how he held our family together through both trying and joyous times.
Before my father’s diagnosis, I had recently moved out on my own and was living with two girlfriends in the city. I was ready to start my life on my terms, I had just accepted a management position with my company and had also recently met the man who would later become my husband. I was thinking a lot about my professional goals, and personal life goals at the time and working really hard to build a life I could be proud of and call my own. My time and energy were devoted almost entirely to making this happen.
On Easter one year, after I had moved out on my own, I invited my parents over to my apartment to celebrate the holiday. My dad got lost on the way to a place he had driven all his life. I knew then that something was not right, but he was resistant to getting medical attention at that time. Later that same year, my parents needed to move. Before we could get my parents safely into their new apartment, my father drove off and was missing for several days. It was absolutely terrifying for everyone involved, but he was safely found and we were able to slowly start to get them into a better situation. This really marked the start of the hardest period of my life, and the most transformative.
There was a period of transition in our relationship that was very difficult, my dad was so resistant to seeing a doctor in the beginning, it was hard to understand what was actually going on with him. So many things were frustrating and terrifying. After he agreed to go to a neurologist, and I was able to go with him and become involved in his medical care, a lot changed for us because we knew what was actually happening. Our relationship returned in some ways to how it had been- filled with love, and yet it was very different in others because I understood what I needed to do to connect to him. I was able to put my frustrations aside and be there for him. I became in some ways what my father had always been for me, a protector and gentle guiding hand trying to keep him safe and let him know how much he was loved.
Becoming a caregiver was the biggest learning curve for me, as my father was a strong man who was used to doing things his way, and in the beginning, it was hard for him to accept that his diagnosis of Alzheimer’s was real. It was a crash course in caregiving, starting in major crisis mode, and eventually becoming more manageable as I found strength within myself and support through our community.
I think it was because of our special and life long bond that I was able to meet my father with love, even in the most challenging of times. Love motivated me to adjust my thinking and communication with him and to see him for who he always had been to me, and who he was inside. I never lost my loving father, even as his neurocognitive functioning and mobility declined. I saw very clearly who he was through his genuine smile and expression of emotion. I learned to listen and to see him on a deeper level, and I always found him there, truly.
I’m very grateful I found the Alzheimer’s Association when I did. After my dad’s diagnosis, I attended a care navigation meeting by myself, because my father refused to go. It was the first time someone was able to relate to me about my situation. I was 31 at the time, and my peers had no idea what I was going through or how to help. I was able to talk honestly about my situation with someone who understood what I was going through. They offered ideas, resources, and support for caregivers. It opened my eyes to the fact that there are resources available, you have to be willing to look for them, but they are out there. It also reminded me that I needed to take care of myself in order to be able to take care of my dad.
Three months before my father’s death, we moved him into an assisted living facility. He was entering the later stages of the disease at this point. However, his death was actually very unexpected, leaving our whole family shocked. One week before he passed away, I was able to visit and spend some time with him. We talked a lot about the past and the future. He knew I was applying to graduate school and he encouraged me. We told each other how much we loved one another, we didn’t know it would be the last time. I am so grateful that we had that chance, and what a comfort it has been to know that he knew how much he was loved. I have no regrets, because I really did try to do the best I could, and I know my father knew that. In some ways, we feel his passing was a blessing and that he did not have to go farther into the cruel grips of the disease. I think we find peace in that.
Alzheimer’s is a cruel and unforgiving disease that steals from those living with it. I have anger, I have hurt, it took from me someone who meant the world to me, and I miss my father every day.
I wanted to share my story because I think it could help someone else. Meeting someone who understood what I was going through meant more than I can express. As my life goes on, I hope that I can be that person for someone else, maybe many others. I hope to stay involved with the Alzheimer’s Association, and maybe even work with them one day using my skills as an art therapist and licensed counselor. As my father always said, “Life is not a sprint, it’s a marathon”. And I keep him with me as I run it.
What is the first thing you think of when you hear Alzheimer’s disease? Is it the scene from The Notebook where Allie suddenly remembers Noah is her husband, but minutes later is startled and confused when he calls her darling? Is it your beloved Grandmother forgetting your name at the last family party? Is it a family member, who has completely lost sense of who they are?
While some of these are accurate depictions of the disease, many people fail to understand what Alzheimer’s actually is. For diagnosed individuals, it is so much more than a little memory loss. It is a fatal type of dementia, and the most common type, that robs families of their loved ones. Symptoms of the disease get worse over time, becoming severe enough to interfere with thinking, eating, taking care of oneself and eventually living. If you have watched a loved one grapple with the severe outcomes of Alzheimer’s disease, you know the emotional pain and grief it can inflict on families.
The bleak reality is unless a cure is found, it is going to have a disastrous impact on all of us in some way. Currently, Alzheimer’s disease is the 6th leading cause of death in the United States. Nearly one in every three seniors who die each year has Alzheimer’s or another related dementia. Without any way to prevent, cure or even slow down the progression, the number of people in the United States living with Alzheimer’s disease, could nearly triple from 5.5 million in 2017 to 16 million by 2050. These are not just statistics, these are people; our parents, siblings, friends, neighbors, and co-workers, who eventually lose their lives to this undignified disease.
Alzheimer’s disease not only takes a hold of the person diagnosed, but it also takes a massive toll on the families, caregivers, and friends of those with dementia, who are at the center of this devastating crisis. In Illinois alone, there are 588,000 people providing over 670 million hours of unpaid care to someone with Alzheimer’s disease. The cost of this care is valued at more than $8 billion. Dementia caregivers tend to provide more extensive care for longer durations than those who serve older adults in other conditions. The effects of being a family caregiver, are generally negative, with high rates of social isolation, psychological difficulty, and financial hardships – leaving caregivers vulnerable to further emotional and physical grief.
Having a place for all those affected by Alzheimer’s disease to turn for information, care and support can drastically improve the quality of life for all involved. At the Alzheimer’s Association, we are constantly working to end Alzheimer’s disease, so families no longer have to bare the burden of losing a loved one. Until that day comes, we strive to provide support and resources to those affected to make their journey a little easier.
As we move further into 2018, we encourage communities across Illinois to help eliminate this devastating disease. It’s a disease that could affect you, but if we rally together, we can achieve a world without Alzheimer’s in the future.
To learn more about Alzheimer’s disease, or to get involved with the Alzheimer’s Association Illinois Chapter, visit alz.org/illinois, call 309-681-1100 or visit the Peoria office at 614 W. Glen Avenue.