I am writing about this today because seeing this in print you may say...."oooo...I couldn't do that..."! I would expect an armchair observer to express himself in that way...When the circumstances warrant "action", it is not an impossible task. It is that...a "task". Routine and time can help us to mold this task into our lives.
No..we would not search out this task to do on a 24 hour basis! That would be foolish! Some have chosen the caregiver as a profession because of a strong desire to help those that cannot help themselves! They go home after a shift.. Others find it repugnant to even consider it...What can I say....to each his own...The fact is: Special needs persons NEED help of others. How grateful they must feel when there IS someone willing to help out!
In my case, Alex is my biological grandson who was in need of a caregiver at age 3 1/2. We came in reluctantly...yes reluctantly! We knew nothing of our role to care for his needs. He was first diagnosed with cerebral palsy. Then he was re-tested and diagnosed with Angelman Syndrome (1990), a little known syndrome and little information about it. We had to do some research. The doctors and teachers knew little. I would send them printed information that I had, to share with them..
In all honesty, I haven't participated in all the new activities involving Angelman and the fund raising that is constantly going on through the Angelman Foundation. I truly feel the pain of our Angelman kids, but have become more involved in helping Alex personally. That is my choice.
A re-evaluation of our life, goals and expectations was now on the table. We had to consider Alex in our plans for the future. Where would he live when we are gone? Would he have someone care for him in the same way we do? What about his needs, likes, dislikes...would they be considered by his new caregiver? These are important questions to the continued good care for Alex!
We have a SPECIAL NEEDS TRUST for Alex so that he continues to be provided for in his future. This Trust has only a limited reach as our hope for the future is based on the promise in the Bible. We believe Alex will be able to run, jump, speak and otherwise be in perfect health soon. This belief in based on the scripture at Isaiah Chapter 35 and Psalms 37:11.
So, how do we do it at an advanced age? We keep our faith alive by attending our christian meetings at the local Kingdom Hall and take Alex with us. We work at keeping ourselves healthy, and Alex healthy. We participate in upbuilding events. We help each other in the tasks involving Alex. That is, we take turns. We realize the "spirit is willing but the flesh is weak".
Alex is now attending an activity center during the day. This allows us to have lunch together, share in the ministry together and just relax. The daily task of caring for his toileting needs and always looking for easier ways to care for this need, preparing and feeding him although there are times he can feed himself with assistance, showering, always looking for diversions that suit Alex, preparing him for our christian meetings, and a multitude of other things only becomes easier BECAUSE WE LOVE HIM!
Sometimes this love is conveyed by seeking out a group home where he can be with his peers. Sometimes parents need this break. No blame..no shame...It works for some parents and in some cases it is the ONLY solution. These ones are not to be judged...Love can also be demostrated by letting go!
The most important thing in caring for Alex is providing the best for him. He has a big family and would feel a sense of loss if he were to be separated from them! For now, the BEST is going on for him! Alex is now 25 years old!
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