By Tyler Roessel
If this word could be, it would be, a four letter word in my book. One of the most complicated, misunderstood and hardest medical issues to deal with. Some could argue that point; however, what other disease leaves you guessing as much? Is my loved one going to forget me? Are they going to get violent? Are they going to wander off? How will the dementia progress? What type of dementia? How long will they live? Unfortunately dementia is very unpredictable and affects people in different ways. So what this means is that caregivers, nurses, doctors can only give generalities and best or worst case scenario information. This is extremely difficult to deal with and plan for without help.
I have worked with dementia for many years as a caregiver, supervisor and activities director. Now I work with families to find housing and long term care options for there loved ones with dementia.
I want to tell you a secret….dementia is expensive.
The biggest issue with our healthcare system is that it is not designed by people that understand how much work taking care of someone with dementia is. Sure, dad looks fine he can: get up, eat, put his own clothes on with a little queuing. He seems super easy to take care of right up until he takes his clothes off for no reason and asks you what day it is for the 15th time in the last 8 hours…of course that could be a good day.
Unfortunately for the majority of us, we don’t have unlimited funds to go private pay at that 5 star memory care community for an unknown length of time. Sometimes we have enough money to last a few years, or months, but then what happens? Medicaid is not widely accepted at communities designed around memory care. Even if your loved one is in an assisted living/memory care community that accepts Medicaid, often it is only accepted on the assisted living side. If your loved one has to go behind the secure doors, the medicaid option is out the window. They may or may not tell you this up front so don’t be caught unaware!
Now that I scared you, I offer hope. There are other options than that big box memory care community. Adult Family Homes offer us hope. The homes we tour and recommend are well checked out. All the caregivers in these homes are background checked, highly skilled and a lot happier. Adult Family Homes in Washington State have a maximum of 6 residents and often have two care staff during the day. Memory care and assisted living communities often have 1 caregiver to 10-12 residents during the day. This means in an adult family home your loved one will have a lot more TLC.
Of course it is best to seek them out early when you still have some financial assets left. If you are already looking at Medicaid the situation becomes more serious but not unmanageable. Why, you ask? The reasoning behind this is that when the assessor shows up to check up on dad to evaluate him for a “daily care rate” for his Medicaid application he is going to be having the best day ever…heck he may even know what day it is. Then your daily rate for getting into a home is going to be so low that a good majority of the homes just won’t be able to help. But being proactive and working with a care advisor like myself can help to get a handle on dementia and find long term options so that your loved one can age in place.
The goal should always be that when it is time to move someone with dementia, it should be for the last time. As a word of warning the longer you wait the harder it is on you and them, so seek help early and often. But in the end of the day whatever stage your in with your loved one we are here to help.