I count myself lucky that my dad is such a wise man. He always wants to make sure that his family is taken care of and he has certainly done that.
Now I have the privilege of paying his bills and making sure that his financial record are in order. Remember, this retired banker worked hard to keep his books in order; often by using a creative method of record keeping. He taught both of his daughters how to keep a ledger!
Two weeks ago when I had the pleasure of listening to Teepa Snow she talked about the financial side of dementia. Did you know that dementia is the third most expensive disease in this country?! Number one and two are head injuries and cancer, respectively.
The good news about number one and two is that insurance will kick in and help pay for these medical treatments. I am in no way saying you would want a family member to have a head injury or cancer. I have seen both and both are heart wrenching health issues and I am so thankful that insurance will help cure and fight these matters. I would also like to say that I cannot speak to either a head injury or cancer first hand and I am very thankful for that. But I can speak to the diagnosis of dementia.
My dad was given the diagnosis of dementia in the summer of 2015. Once you receive that diagnosis, there is not a medical treatment plan. There is not a percentage rate of those that have had dementia before you and have been cured. You just get a diagnosis and a sympathetic look from the medical professional. They are sorry for the patient and sorry for the care giver.
So now what do you do?
Teepa Snow told us that you build your “team.” Awesome, a team. A team of what? Do we get matching jerseys? Will we have a team practice before we are called into action. Yes and No. No, team jersey but if it makes you feel better, go for it! And just in case you were wondering, everyday is practice. All day long, every day.
Our “team” is made up of an internist, a neurologist, my mom, my sister, several sitters and some close friends. Early on we had some doctors on our team that we had to fire. This “team” is not an appointment for life. If you do not carry your load, we will vote you off the island!
Some “teams” may include an elder care lawyer. If you are not in the same city as your loved one or you do not have a relationship with other family members on your “team,” then an elder care lawyer might be a good move for you. Be sure to interview this person just as you would interview anyone else you are trusting to make wise decisions for your family.
Due to the high cost that are involved in caring for a person with dementia, 70-75% end up on Medicaid. My parents are lucky to have resources and they do have insurance and Medicare, however you can drown in the paperwork that floods your mailbox. I am so very glad that my dad was able to read the volumes of information that his insurance company provided him years ago. I am lucky that I can just post the debits in his ledger each month and know that their medical bills are taken care of.
I will tell you that I truly believe that the number one goal of Medicare is to wear you down. Make you give up and walk away. I am here to tell you to hang in there! Do not walk away. Be persistent. Remember that your mother told you to always be nice . . . first! Then shift gears and let them know that you are an immovable object. They might as well deal with you because you are not going anywhere!
It took us at least four months to complete all the paperwork necessary to get my mom’s first electronic wheelchair. My mother will tell you that it was a piece of junk. My sister and I will tell you that part of the problem was from operator error! Some door frames just will NOT move, no matter how many times you run into them!
My dad is still mobile and he has a collection of canes to assist him. However, we were able to get a prescription from his doctor for a walker to assist him on bad days. He has a scooter that will flat-out move! I will be honest and say that I do not remember if the scooter was covered by insurance but it does not really matter. That red scooter brought the biggest smile to dad’s face! It was like receiving a shiny new red bike on Christmas Day. Totally worth whatever we paid.
But, that is the extent of what insurance will pay for. Insurance does not cover the round the clock care we have for my parents. Insurance will not cover a room in the memory care unit should it ever be needed. Assisted living and memory care rooms are unbelievably expensive. I can tell you that a memory care room for my dad would cost an additional $7,000 a month. This is not covered by Blue Cross Blue Shield.
Some people have long-term disability insurance. Most do not. This is an expensive disease. This is a disease that can go on for many many years.
Bottom line: Our healthcare is behind the curve when it comes to dementia. According to Teepa, Canada has better resources than the US. Many times the focus on healthcare for senior citizens is on prevention of diseases or living with a disease, not curing demintia. We need to reevaluate what dementia is and how we deal with the disease.
One out of five families will be faced with some sort of dementia. Do you know who would be on your team?