According to the 2019 report from the Alzheimer’s Association, 5.8 million American’s have Alzheimer’s. This report also shares that the risk for Alzheimer’s at age 45 is 10.3% for men and 19.5% for woman. It also shared is that, “According to one study using data from the Established Populations for Epidemiologic Study of the Elderly (EPESE), approximately 487,000 people age 65 or older will develop Alzheimer’s dementia in the United States in 2019” (19). The general nature of Alzheimer’s is something most are familiar with, but understanding what it is like caring for a family member who suffers from it is less common.
Last month we discussed the financial costs of caregiving, so I thought this month I would share what it is like to be a caregiver firsthand, and since there are 5.8 million families out there caring for a loved one who suffers from Alzheimer’s, I reached out to my mom to get her advice and insight on caring for someone who has this disease. It’s been six years since we lost my grandmother, Ramona, to Alzheimer’s, and my mom, Ann, was one of the primary caregivers for her mother in law.
Heidi: How did caregiving shape your perspective?
Ann: At least in our case, and as I’m sure is the case with other aging parents, when we tried talking to Bunchy (Ramona’s husband) about the future and preparing for when Ramona’s Alzheimer’s had progressed and things were bad, he didn’t have answers or a response, except that he wanted to take it one day at a time. With this disease, and with aging in general, you can prepare for some aspects, but you don’t know how Alzheimer’s is going to play out, it’s different for everyone. And when you’re older, as in Bunchy’s case, you have that one day at a time perspective because you already don’t feel well, and maybe he would plan to do something or take care of something, but then he would be exhausted. So, you have to learn to work with that perspective and see the wisdom in it, but also try work around it to make sure there is a plan.
Heidi: What was unexpected?
Ann: The up, up, up energy level. Ramona constantly tried to wander, and always wanted to go somewhere. There’s also the emotional aspect, you know that you love and care for the person and you want to do everything you can but you have no idea how ravaging the disease is for the person, and as you experience the physical toll of taking care of them and emotional toll watching it ravage them, your energy levels can decrease drastically. You have to remember that they don’t get a break from the illness, for them it is 24/7, so caregivers don’t get a break either. As I mentioned, their energy level changes, Ramona seemed to have more physical energy than she did before she had the disease.
Something we didn’t realize until working with a caregiver outside the family, is that you want to make sure the values of the caregiver aligns with the patient’s original values so they can preserve their view of dignity. Since the patient doesn’t remember their views, you need to honor them for the person they were, even when they’re sick
Heidi: What is some advice you have on caring for yourself and them?
Ann: You have to realize that you can’t plan on getting help for certain things, and you can’t just rely on state agencies. You should look into what your state offers for assistance, so you know what to expect. Six years ago, in Vermont, the state would only pay for 15 hours of care a week. If you consider how many hours there are in a week (168) and when someone needs care 24/7, 15 hours wasn’t enough, we had to figure out how to make up the difference. Fortunately, we had family that was willing to help and friends in the community. Without that support, Ramona wouldn’t have been able to stay at home. Seeking and relying on that support is critical. Also, everyone in the family at the time had flexibility in their work schedules, which again if that hadn’t been the case, Ramona would not have been able to stay home. It’s really important to understand what everyone can give and make a plan from there.
It was also important to all of us that we each took time away from caregiving, because being in it all the time, takes a huge toll. Communication is really key, talk with your family and others involved, because if you don’t, you’ll burn out or you could develop resentment and then guilt down the road.
Heidi: What estate planning or financial planning tips do you have?
Ann: Bunchy was ahead of his time, and he actually took out a long-term care insurance policy, years and years ago, before people thought about them and considered them part of smart financial planning. By purchasing it well in advance, it enabled Ramona to stay at home. Policies these days don’t cover what his did, so you need to do even more planning in conjunction with it. Taking out long-term care policies, whether you have Alzheimer’s in the family or not, is a wise move.
Since Bunchy wanted Ramona to stay home it ultimately didn’t allow the financial resources for him to stay home after her passing, so he ended up in a nursing home. Ramona had Alzheimer’s for seven years and it progresses differently for everyone, so it was hard to gauge the finances. If Bunchy and Ramona had done more estate and elder planning with the knowledge that we have now, Bunchy would have been able to stay home longer and have more financial resources when it came time to care for himself.
Ultimately, my family had a huge learning curve when it came to caregiving, and in the process my family learned the importance of doing comprehensive estate planning well in advance.
If your family has someone with Alzheimer’s or you know a family who does, please contact our office today. We have advanced estate planning strategies to take care of families and help you plan for long-term care for both parents. At Family Estate Planning Law Group, we have vast experience in planning for various debilitating diseases and a wealth of experience in elder law. To learn more about how we can help care for you and your family, especially in caring and planning for some with a debilitating disease, visit our website and schedule a complimentary consultation.