How to Organize Dementia so you are not Overwhelmed

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So why is dementia so difficult?  The reason is that they’re just not just dealing with a physical disability, they are also dealing with a mental one. This does not allow you to have a normal personal relationship with this person. It’s hard for them to tell you what they are feeling, if they are in pain, what hurts, and new health issues that might arise. You feel hopeless. In the face of this disease, a sense of helplessness emerges.

So why is dementia so difficult? This is a loaded question because. We have to look at several things before we can determine what you need. As the dementia disease progresses your needs will change. So, knowing where you are on the spectrum  – from your loved one just simply forgetting a few things to the final stages of dementia leads to your many different treatment plans and everything in between.

Patients would ask me all the time, “What is the treatment for dementia?’  And the answer?  24/7 care. 

The reason it’s so important to determine what you need right now while caring for your loved one who has dementia is to know exactly what you want.

JENNY: For example. Take Jenny. She has just been diagnosed with dementia. Her husband is going to take care of her. She feels guilty since she knows what this disease will do and wants him to get help now so that he doesn’t have to carry this burden alone. She doesn’t know how fast the disease will progress. None of us do. But she is aware that somebody is going to have to look after her eventually 24/7. So right now, Jenny just needs somebody to keep an eye on her, somebody else she can call at this time when her husband goes out and does errands and does his hobbies and things like that. Maybe she’s OK by herself. But in case he doesn’t get back on time, her husband knows he can have someone check in on Jenny until he can get back home.

MARK: Contrast this with Mark. Mark has been was diagnosed with dementia years ago. He needs 24/7 help. He’s tried all the medications. They worked for a while, but now they’re not working anymore and his wife Mary, is the sole provider of care. His behavior changes day-to-day. She never knows what to expect. She feels alone. People don’t really come to visit anymore. And if they do, they tell her it’s time to put him in memory care. Mary is afraid there is no money but she stops short of mentioning this.  She’s embarrassed and doesn’t know what money is out there. She’s exhausted and busy taking care of him. So what is Mary going to do?

We have members who come this us with both Jenny and Mary’s problems all the time. First, we have to look at what stage of dementia, what the behaviors are. Our first question is: what can Jenny and Mary handle at this time? This is the biggest question  – what you can and cannot do. What you will do and what you will not do.

Why is this important?

Because we know that there’s a stopping point in care. In other words, one of the very first questions I always ask my new clients when I bring them onboard is what is it you’re willing to do and you can’t do anymore because I know that if you can’t do this stage of dementia now, you’re certainly not going to be able to do the following stages further down the road in this disease. Medicare isn’t going to help you. VA benefits may help bring in some extra help. You may get other programs to help you bring in some extra help. Taking care of a person 24/7 is not OK, especially when it takes 31 people in the memory care unit a week to take care of one person. This is because no facility wants to burn out its staff. And burn them out. They will.

I once had a patient come in the office who worked in memory care and because they were so short-staffed, she’d worked 14 days straight and the only reason she was in my office was that she was ready to have a breakdown. Her problem was the work she was doing, but the inability to say no, the inability to take time off. We’ll talk about this in a few minutes, but this is the crux of the problem. This girl was unable to recognize that no one can do 24/7 care alone.

You can Organize Dementia.  Click here for a FREE worksheet to get you started.

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Once we’ve established these three things: dementia is a chronic disease, it’s going to get worse. We’ve identified the stage of dementia that the loved one is in. And we’ve identified what you can and cannot do to move forward in this disease. Now we can look for the appropriate help and the resources:

For example, there is:

  • Day to day care
  • Long term care
  • Residential care

And then you have to ask yourself, what kind of person am I looking for?

Do I need help from:

  • Family, friends, neighbors
  • Health care providers
  • Patient advocates
  • Care Managers
  • Counselors
  • Social Workers
  • Elder Law Attorneys

And then where to find the help?

It depends again on what you are needing.

Once you have established the need and the type of person, now let’s find the resource.

And there are special populations of folks who have additional benefits.

Click HERE for the worksheet that lays all this out for you.

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It is important to understand that Medicare only pays for the medical aspect of your loved one. Diagnosing dementia. Maybe medications for dementia, maybe other chronic diseases, but it does not cover any help or assistance you need unless they are patients in rehab or hospitals. A few exceptions are out there.

Medicaid will take it a step further for you. And provide assistance in many different ways.

For example. Many Seniors have been married to a veteran or were a veteran themselves and they qualify for money to help pay for care. Is it worth it to get a professional who knows exactly how to fill out these forms correctly in order to get you the money?  You bet it is!

For example, our member David called a program we recommended and now has $1800 a month that he can use to help with his mother. Who was married to a veteran?

The biggest problem with taking care of someone with dementia is that families do not know where to look for help.

Just talked to a professional the other day that has been in business, helping seniors for 20 years, and just found out about another program that’s been around forever. These programs are out there. We gotta dig them out. They don’t advertise. You won’t find him on Amazon. The paperwork can be complicated. Once you do find them, and there’s no guarantee after you fill out all the forms that you’re going to get any money. But a professional can tell you right up front yes or no, this is going to work or we’re going to do it this way, so it will work.

This is what advocates do. In our membership, we have the resources. And sometimes we STILL have to go dig them out depending on what state you live in to get you what you need and the relief you need. That’s what we do. That’s just one of the things we do.

WHAT IS THE NEXT STEP:

So what’s the next step? It’s to CLICK HERE. And get this quick worksheet. Let’s start with steps 1 and 2. Figure out what you need specifically. Then you can go down that path, staying focused to get you out from under your worries and frustrations.

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Suzanne FiscelIa, PA-C, BCPA

I know exactly what it's like to feel like you just can't keep up. Working a full-time job, raising 3 children as a single mom, and taking care of her aging mother. But after feeling lost, overwhelmed, and guilty for spreading herself too thin, I saw all her patients and their caregivers going through the same thing.I learned how to put simple systems in place to keep my life free from distractions, find free time to do the things I wanted, and enjoy my family along the way. These simple step-by-step solutions have been shared with my patients, friends, and family.They too have found organization, confidence, peace, and freedom. Now we all live the life we love while caregiving! Come join us!
sue

Hi I'm Suzanne

And my mission is to find you practical easy-to-follow solutions for everyday caregiving. Find out more HERE.

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