Are You Ready? Parent Care Planning Is Key

It was Easter Sunday, when I got “the call.” I really wasn’t sure when I would get it, or who would actually call me-a neighbor, friend, doctor, or hospital. But, the voice on the other end of the phone was my 75 year-old Dad. I really hadn’t expected him to be the one to call. It was nine o’clock at night, and he sounded scared. He said, “Kim, I have some bad news. I think I have Dementia.” He went on to tell me that he had gone to watch the local baseball team play, and got lost driving to the stadium. He had been a Pelican’s Baseball season ticket holder for nine years, so he knew how to get to the stadium.

I had been calling my father faithfully every Sunday and sometimes as much as three times a week. I visited him at least twice every year. He lived seven hours away from me, and I had not noticed any signs of Dementia before. I had just visited him two months before this call. Why didn’t I see any signs? What was I supposed to do? He was only 75 years old. He was young, and I wasn’t ready for this.

Five years before my Dad’s call, he had decided to get his information together to make things easy for me when the time came. He gave me a sheet of paper with all his bank accounts and numbers, and the location of his safety deposit box and key. He even introduced me to his attorney and financial planner. That way they would know who I was when I needed them. I was so thankful that he was so proactive in providing the information. I filed away the information and we never discussed it further. That was our plan. No health information. There was a trust, but he never put the properties and financial assets into the trust’s name. Did he have insurance?

Now, five years later, I am on the phone with my Dad, and I am completely clueless about what to do for him. I got in my car the next day and drove down to his house. He didn’t know who I was, but he let me into his living room. It was 11pm by the time I got there. He was talking erratically and making a microwave dinner. I asked where his dog was, but he didn’t know. I asked if he had fed her, but he wasn’t sure. I asked where the dog’s food was-thinking that if I found the dog, it might be a good idea to feed her. He couldn’t find the food.

I decided that it might be a good idea for him to call it a night and go upstairs to sleep. I would clean up the kitchen and check on him in the morning. He started up the stairs and his eyes closed. I ran over just in time to catch his slumped over body and lay him on the floor. I called the ambulance to get him to a hospital. The drivers arrived and started asking questions:

What medications is he currently on? Me: Not sure
Where does he keep them? Me: Don’t know
Which hospital does he want to go to? Me: There’s more than one?
What allergies does he have? Me: No idea

Well, you get the picture. I could not have been less prepared. I felt like I didn’t even know my own father, and it got worse from there. When we got to the hospital, they decided to take him for an MRI. There were more questions that were asked that made me feel even more incompetent. Did he have tattoos, metal screws in his body, metal plates in his head… I was pretty sure he didn’t have any of those things, but considering he played baseball and other sports in school all the way through college, anything could have been possible.

What I went through that night was just the beginning of a long journey of research, doctor’s appointments, nursing home and assisted living visits, pulling my hair out and losing my sanity at times. I even became a certified caregiver through the American Caregivers Association. I had no idea how unprepared we were! It isn’t difficult to put a plan in place.

I would not want anyone to feel as helpless and overwhelmed as I did. That’s why I started Parent Care Coaching. I wanted to put my Life Coaching career and “parent caring” experience and knowledge to use helping others who have aging parents. We want to provide the best for them, but it isn’t easy when you aren’t sure where to start or don’t know what options are available. Planning is key.

And yes, in case you were wondering, I found Millie, the dog, brought her inside and fed her.

Kim Fowler has studied Life Coaching for over 15 years and is certified by the International Association of Coaching. She is also certified by the American Caregivers Association and finished the National Caregivers Certification Program. She lives in Surfside Beach, SC with her husband, Rich, their three cats and Sam the parakeet.

Aging Parents Caring For Their Adult Children With Special Needs

The scene is becoming more familiar in communities across the country. An aging parent, usually the mother, weeps bitterly as she is forced to surrender custodial care of an adult child with special needs. After caring for a loved one for fifty years or more, separation can be excruciating. However, the mother is now in her late eighties and experiencing health problems which preclude her from continuing as the primary care giver. Parents of special needs children realize this day is inevitable. Early on in the process a decision was made to keep the child in the home, no matter what the costs. Those costs involve the aggregate total of emotional, financial, and time investments required to provide a loving and stable home environment. Life for the children in these situations is no cakewalk either. Their lives are often characterized by isolation and uncertainty, not to mention being misunderstood at every turn. The “child” in this situation is now approaching sixty and also realizes, on some level, change was bound to happen. Two lives intertwined by an unbreakable cord, must now part according to life’s epic design.

With the proliferation of Autism Spectrum Disorders rampant in society, millions of parents will face this scenario in the not so distant future. Although there are differences from past generations, the family dynamic hasn’t changed. The fundamental question for parents of special needs children is, “Who will care for my special needs child when I’m unable to or when I die?” In response to that question, the obvious answer would be siblings or some other family member. But upon closer examination, the obvious choice may not be in the best interest of the person with special needs. In an age of blended families and non-traditional marriages, families can be the least desirable place for a person with special needs. Moreover, stability should be the number one priority when making an important decision such as determining place of residence. Family members are not always in a financial position to assume the role of a surrogate parent. Depending on the medical needs of the special needs individual, relocating may not be a viable option for many families in this situation.

There are high functioning people with autism or asperger’s syndrome capable of living independently with a solid support system. Some parents are purchasing a condo or apartment with the intent of making it the child’s primary residence at some point in the future. The greatest advantage in utilizing this strategy is the security of knowing your child will have a place to live when you’re no longer around. The fact that you can also leverage your tax position doesn’t hurt at all either. The vast majority of people with autism, however, will require some assistance from family or a facility designed to provide direct care. Finances are a major consideration when discussing nursing home or assisted living arrangements. This option usually means qualifying for medicaid since medicare does not cover long term care expenses. Last, but certainly not least, there is the sticky age 65 requirement involved with medicare. That having been said, we come full circle with the issue of growing older and caring for special needs adult children. After all is said and done, we love our children unconditionally and acknowledge the day of separation that is sure to come.