Guest Author - Deborah Pipas
Are you or someone you love now in the process of making a decision regarding institutionalization, residence in an assisted living community or lifetime commitment to home care due to a disability? The appointments with the doctors have been kept, all tests have been completed, every assessment that the healthcare industry is allowed to make has been done and finally the diagnosis has been determined. Decision time has arrived and all efforts have been exhausted. The disabled patient must be cared for, who will do that and how will it be achieved?
When things turn out for the worst sometimes a stay in the hospital is required. In today’s society this is usually a very short period of time due to the insurance companies, Medicare, or Medicaid being unwilling to pay the exorbitant medical bills of an extended hospitalization. The disabled patient is often dismissed from the hospital within just a few hours. They are stabilized and taught how to do certain procedures for themselves depending on age, mobility and ability. However, there will still be many routine daily care needs that they will be unable to perform themselves. Time passes like a whirlwind usually all of these events occur in just a couple of days depending on the extent of the illness, and the time arrives to make preparations for continued care for the disabled patient.
The patient may return home briefly while the family decides on a strategy to care for their loved one. Other times the patient will be sent to an institutional type care facility often directly from the hospital never to return home again. Some will spend the remainder of their lives in such a facility only being allowed occasionally to visit during the holidays and special occasions. When these patients are transported many times they are not aware of where they are going or that they will never again live in their own homes. This is overwhelmingly difficult for the patient and the family when it all becomes reality. Often the patient feels and believes that the family has abandoned them and no longer wants them in the home. They believe that no one really cares for them because they have not yet accepted or cannot understand the seriousness of their disability. This is true in cases of severe mental retardation, mental illness and a variety of other long term disabilities. The family must adapt to this and help prepare clothing and personal items the patient will need to take with them. This is a very sad time for the family as they prepare to release their loved one to an extended care facility to be cared for by strangers. This is especially so in the case of child or loved one that is unable to communicate. This is a life changing event and so unbelievably heartbreaking for those involved.
If the disabled patient will remain at home it may be a little easier emotionally but the road ahead is long often with no end in sight. Very often changes in the home will need to be made, this could include installing wheelchair ramps and/or safety appliances in various rooms of the house and a variety of additional other arrangements. A safe environment must be arranged for them so that they can be cared for daily by family members, friends or visiting caregivers. Often these changes are not optional and definitely expensive but will be required to provide daily care and handle mobility issues.
In a perfect world arrangements would be made for an attendant to come in a few hours each week to give the family a much needed rest and time to take care of their own personal business. Unfortunately, that is not always the case due to finances which can leave the family to face a great deal of stress, a heavy financial burden and sometimes isolation. It becomes the sole responsibility of the family to make financial arrangements for the needs of the disabled person, to be responsible for the daily distribution of medication, to either bathe or assist in the personal hygiene of their disabled loved one, to make and keep doctor’s appointments and a variety of other issues that will undoubtedly arise. The emotional strain on the family as a unit is undenialable.
For those that have never been through such upheaval there really are no words to express the range of emotions everyone will experience. For those who choose to care for loved ones, to visit them in institutions or assisted living communities, to just continue to love them no matter what happens we truly must remember that life is not about the problems but rather about how we choose to live the journey.
