Dementia is hard. It’s hard for those experiencing it and especially difficult for those supporting the afflicted. There are several phases you will go through especially as mental abilities decline and impact the day to day. Understanding what’s happening and having a game plan is a critical part to overcoming and persevering through these difficult times.
What Is Dementia?
Before we can really address the damage that dementia can do emotionally and financially, we need to talk about what dementia is and what it isn’t. Dementia is not a disease. It’s a term used, like a widecast net, to encompass many different symptoms. Typically, people who suffer from symptoms of dementia, are dealing with at least two of the following:
- Memory loss
- Difficulty with communication and language
- A decline in reasoning or judgement
- Inability to focus or pay attention
- A lapse in visual perception
According to Alzheimer’s Association, symptoms of dementia can vary greatly. Some may struggle with short-term memory, while others might have a gap in cognitive skills.
The most common and widely known disease is Alzheimer’s. It’s also possible that dementia is brought on as a result of a stroke or thyroid issues.
Dementia is caused by damage to brain cells. When a disease or event (like Alzheimer’s or a stroke) causes permanent damage, the cells aren’t able to function properly. In some cases, as with Alzheimer’s, they continue to deteriorate over time.
The Alzheimer’s Association reports that many people incorrectly define dementia as “senility” or “senile dementia”. This is a problem because it promotes the idea that a significant decline in mental ability is an expected part of aging – which isn’t correct. Because of this misconception, many people assume that getting older naturally comes with these symptoms – and they wait too long to seek help themselves, or their relatives who notice the signs don’t address them.
It’s hard to quantify the emotional damage that dementia causes. It not only impacts the person living with dementia it also impacts family, friends and most notably, the immediate caregivers. The effects of dementia are ongoing and will change with time. As the symptoms of dementia worsen, there’s often a loss of emotional control. This can sometimes result in violent outbursts, misplaced accusations, and other reactions. For loved ones, there can be a feeling of guilt – especially if you feel you somehow caused the outburst.
There’s also a distinct sadness at feeling the relationship you once had with this person is gone.
You may feel like things are strained between you and your loved one with dementia after they have an outburst or get frustrated with you personally. It’s important to remember you are not the cause and it’s not your fault. They’re not angry with you. They’re angry because they have much less control over their ability to function, remember, or live their daily lives.
Dementia can be financially damaging too. While the focus has been on the symptoms of dementia, we need to consider the financial implications too. Please keep in mind that a lapse in good financial judgement is often one of the first signs of dementia-like symptoms. Some things to watch for are:
- Bills going unpaid
- Overdraft fees
- Unpaid taxes
This isn’t always easy to do, especially because talking about money tends to be taboo. And you might find a good deal of resistance about giving up control over their checkbook or finances. It’s a real indicator of how “bad” things have gotten and it’s hard to embrace the new reality. However, if missed bill payments start to pile up, or your loved one forgets to enroll in Medicare or Medicaid, things could become much more costly as time goes on.
Although we typically view the costs associated with dementia as being entirely medical, the additional small expenses add up over time. Between taking time off work to care for your loved one, travel costs to and from care centers or medical facilities, dinners out (or take out), extra groceries, and more – things can become more expensive than you may have anticipated.
This Is a Journey
Living with symptoms of dementia, or living with someone who’s going through it, is a journey. That journey may be short or very long lived. Your day-to-day will change as symptoms shift. And while your attention will be on the day to day, it’s important to think about the long-term game plan. Do you have one? Here are some resources to tap into to help:
- Find a local support group here.
- Consult with a professional to help develop your care roadmap.
- Educational offerings to help you get through and manage your current situation including the financial and legal aspects of dealing with dementia can be found here.
And if you are working with a financial planner, call them and ask what resources they may have available. You are most likely not the first client to be experiencing this and they may provide guidance on the financial and/ or legal aspects that you should consider. Just know, you are not alone.
Some additional valuable resources you should check out:
- Alzheimer’s Association is an incredible resource with lots of ways to connect to people who know what you are going through and how to help.
- A Place For Mom is a service that helps you find a place to live for your loved one.
- Finally, LongTermCare.acl.gov has so much excellent information about what’s covered by Medicare and Medicaid.