Dementia and Diapers

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Photo by Tefan Leijon

My husband and I daydream a lot about what our future will look like. Since we have so many kids we are hoping that grandkids and extended family members will be a big part of our family and our daily lives. I definitely don’t want to be burdened with the worry of whether or not I’m going to have enough money to take care of my disabled daughter and myself. Dementia runs in my family and I am scared to death that my poor husband might have to change my diapers and our daughter’s at the same time.

In my daydreams it’s my hope is that someone will discover a miracle cure for Autism-and Dementia. Or at least a machine that an adult can sit on and it will change their diapers for them. (Why hasn’t anyone invented that yet)? Obviously we want to be around as long as possible, but we also understand that we need to plan for our end-of-life care. I must be especially proactive with making provisions for my Autistic daughter’s future. We as women tend to worry a lot anyway, but when you have the worry of not knowing if one of your children will have the care that they need throughout the course of their life can be slightly disconcerting to a parent.

There is a great quote that says, “One day in planning prevents two days of execution doing.” If you look at planning for the future as a task that will give you great peace of mind in the end then you will not be so overwhelmed with starting and ultimately completing the task of financial and end of life planning. According to the Federal Reserve, US Census Bureau and Internal Revenue Service, 40% of US families are not saving for retirement and 25% of US families don’t have any savings at all. Only 3% of the US population have purchased long term care for themselves or their children. This number is staggering. I know it’s easier to take a head in the sand approach, but this strategy will catch up with you and prove ineffective in providing care for your Autistic child.

I suppose that because I have worked with Medicare beneficiaries at great length I have learned some wisdom from their self-reflection on life and their preparations for end of life. I have seen the elderly living in squalor and I have seen them living a life of leisure and luxury. I can’t tell you how eye-opening it is to see a sweet elderly woman tell me that she has to skip a meal because she can’t afford food or can’t drive that week because she doesn’t have enough money to pay for gas. And I won’t even begin to tell you how long I cried when I met a senior who supplements her diet with dog food because it’s cheaper.

Don’t believe the lie that social security benefits will sufficiently pay for and fund your retirement. According to the Social Security Administration, the average monthly benefit for retirees is around $1184.00. Could you live off of $1200.00 a month right now? What do you think that the difference is between those who have a comfortable end of life experience and those who do not? You know what I’m going to say, don’t you? Proper planning. And I don’t mean scoping out every bank within the city limits for plan B. Bank robbers are so dumb these days. That strategy only worked in the pre-digital days.

It is crucial that you consider what you and your Autistic child will need financially for long term care. It is so important that you meet with an advisor or someone who you look up to financially to help you navigate through the complexities of financial and health care planning. The Great Recession has hit many families right in the financial gut, but it’s still necessary that you are a good steward with the resources that you have right now and may have in the future. Estimates show that a person must have at least $360k in the bank by the time they are 65 in order to live at a standard of living above the poverty line. If you’d like to calculate how much you need to put away in order to retire, visit: http://www.bankrate.com/calculators/retirement/retirement-calculator.aspx.

Don’t let this make you feel discouraged, let it be a motivator to decide today to take action to ensure that you are comfortable and that your child who will be an adult at that time will be comfortable. I’ve seen a great many people stand on the platform that they are going to live now like no one else does (by saving) so that they can live like no one else will in the future (by having an adequate cash reserve). Don’t trust that the system will be around to support you or your disabled child. The government shutdowns of the past and all of the chaos within the U.S. federal system should prove to you that you can’t fully rely on the government.

If you do not have a life insurance policy, please think about getting one. If you have a  life insurance policy, you are ensuring that your family will have something to live on if you are taken away from them. There are two different types: term or whole-life. A term policy in in effect for a set amount of years and then expires. A whole-life policy covers an individual for their whole life. If you have a whole life policy, you are ensuring peace of mind and building cash over a long period of time that you can draw from later if you have an emergency. A less-expensive alternative is to have a combination of term and whole life insurance. The reality is that death comes to us all. To some it comes faster than others.

A few years back in my community a young businessman was shot in front of a local drug store after he’d had an argument with someone in the parking lot. This news was quite shocking as in our city we have less than two murders a year on average. The man left behind a wife and quite a few small children. I remember feeling immensely bad for his wife, who was a stay-at-home mom. I wondered if she’d be able to live off of social security and if he’d left her anything. Fortunately, the wife of the slain man had been smart enough to insist that her husband carry a one million dollar life insurance policy. The money was delivered to her immediately after the funeral and you can bet your ass that the widow sleeps a little easier. I read in the paper recently that she’s married again and is immensely happy. Having a million dollar life insurance policy is a very kind thing to do for your family.

My husband knows first-hand that there are no guarantees a parent will always be around. He was seventeen when he went home to check in with his parents before going over to a friend’s house. His dad, Don, was working on a car in his shop. He had recently been laid off from his long-term job and had taken to repairing cars to bring in extra money for the family. After Rob let him know he’d be down the street hanging out with his friends, he said goodbye to his dad. That was the last time he ever saw him alive again. When Rob was at his friend’s house, the car that Don was working under slipped off of the jacks that it was sitting on and crushed his father.

Did Rob’s parents ever consider that one of them wouldn’t be around to see Rob graduate that upcoming year? Nope. No one ever wants to face their mortality. Rob’s father had a very small life insurance policy that barely covered the funeral. Rob’s sweet mother had to borrow money from her family in order to sell the house and get into another one. Parents of Autistic and special needs children are hyper-aware of what their children are doing at all times. Doesn’t it make sense that we should also ensure their care and safety after we’re not around? We must face reality head-on and have a plan A, B, and C.

It is also extremely important to have your will recorded at your local county recorders office. If you don’t take the time to outline what your wishes are for your life insurance policy and who you want to manage your estate and care for your child, the state that you live in will decide for you. If you can’t afford an attorney, there are many professional websites that will help you draft a will, power of attorney, and health care directives. These sites charge either by the document or you can sign up as a member.

Some legal form sites, such as the one that I use RocketLawyer.com, gave me a free thirty day trial and allowed me to create as many documents as I wanted during the trial. I was able to do a business partnership agreement for a small business I wanted to start. I also was able to do a power of attorney for health care and finances, and was able to draft a very strong will. When the trial ended, I was still able to keep the documents and I was offered to activate to full membership at a discount if I wanted to.

I know it’s hard and you have a million things on your plate, but don’t put off for tomorrow what you should be doing today. You never know when you won’t have anymore todays left. You are your child’s fiercest advocate. Set up systems in the future to the best of your ability that will ensure that your child will have the environment and care that they will need to live at their happiest and healthiest. You can take a look and the information you have now and determine:

1. Who is best equipped to take my child if I were to pass away?

2. Who does my child get along with in our immediate family?

3. If I have other children, would I want them to all stay together, or am I open to them being split up to ensure that my Autistic child gets the care that they need and the caregiver won’t be overwhelmed?

4. Have I determined what raising my child will cost and do I have the resources to provide for that? (Life insurance, assets such as a house or cars, or liquid assets such as cash or gold or silver. Social security benefits will be paid to the caregiver until the child is eighteen years old, but this is not a large amount and will not fully cover the cost of their care).

These are only a few of the questions that you should be asking yourself when you first begin planning for your child’s future. Planning prevents fear and worry and if you take care of it now you’ll have one less thing to worry about. You most likely won’t get shot in a parking lot and you’ll probably live to the ripe old age of one hundred. But just in case, you should probably put a contingency plan together.

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