“The flowers that were almost not planted”
On a day in late November 2000 shortly after Donna had begun to receive the wonderful care of Hospice Buffalo a member of our church telephoned to ask if there was anything that he might do to assist us.
I playfully mentioned that on a recent shopping trip I had purchased ten bags of crocus bulbs at an unbelievably marked down cost without stopping to recognize the magnitude of the purchase. There were 70 crocus bulbs in each bag, amounting to 700 crocus bulbs to be planted.
Without any hesitation our friend insisted that he would arrive at our home on the next morning to plant the crocus despite my comments that there was no hurry.
Well for those of you that are aware of the Buffalo New York winters and especially the lake effect snow storms, you will not be surprised that on the day following our friends planting, we received an overnight 24 inch snowfall and an almost unending number of follow-on snow storms throughout the winter. Clearly, had the crocus not been planted on that day the opportunity to do so would not have occurred.
While Donna did not get to see the crocus in full bloom I will never forget her delight at the sight of some of the more adventurous bulbs that ventured up through the snow during one of those infrequent sunny February days.
In the days, weeks, and months following Donna’s passing my mind continually drifted back to my thoughts about “ The flowers that were almost not planted” and how that story relates to planning ahead in a timely manner regarding key care needs.
Such as identifying & obtaining adaptive equipment / stategies and living space modifications early on and as quickly as eligible. Planning that can guide us to being able to provide “the best quality of life patient care.”
While I pray each day for a cure, or at least a medicine that can substantilly slow the progression of this illness I felt that I now needed to focus my efforts in learning about, and participating in bringing about a better understanding of the “Comfort Care Measures that can be undertaken”.
With that in mind on January 19, 2003 (the anniversary date of Donna’s birth) I became a Hospice Buffalo - direct patient care volunteer. In that role for the past five years I have been invited into the homes of many that are experiencing life limiting illnesses including many that are addressing the unique obstacles that are presented by ALS.
In doing so I have become much more keenly aware of the immediate needs that can be explored and accomodated with the help of others. The key word being “with the help of others”. There are so many times that friends, associates and family members express the desire to help, but simply are not familiar with the basic needs. Needs that they can help address with the assistance and guidance of organizations such as the ALS Association, the MDA ALS Division and support groups / loan closets for those organizations.
Basic Needs such as -
Wheelchair accessible doorway openings (into living spaces – home entrance, entrance to bedroom, toilet, bathing areas)
Walker with fold down seat (for early stages of the illness only).
Transfer chair or conventional wheelchairs can be helpful in the early stages of the illness, however eventually specialized wheelchairs will be necessary. Not necessarily powered chairs, as they will require a wheelchair accessible van in order to travel. More importantly, wheelchairs that can be equipped eventually with special adaptations needed as the illness progresses.
Elevated toilet seat with grab/lift bars with adequate surrounding space to be wheelchair accessible.
Ramp(s) from ground level up into living space level.
Living space on one common level – dining, sleeping, bathing & toileting all on one living space level. (you will be surprised how a single room can be converted to provide each of those uses with some planning and assistance of others)
Bathing - a curb-less roll in shower & roll in bathing chair (if possible). If not, then a nearby source of hot and cold water/sink if possible for sponge baths.
Patient lift & positioning device - suitable for safely lifting & moving the patient within the confines of their particular living space.
Some form of communication system/alarm device - that can be actuated by the patient to alart the care giver that their assistance is needed. A "lifeline" type telephone system with an activation button in a position where the patient can activate it can also serve this purpose. There are several companies that can provide this type of alarm with no installation/equipment costs, only a monthly payment for use of the system.
MOST IMPORTANTLY - A Hospital Bed - with a mattress that is specifically designed for the patients needs.
In preparing for the comfort care of your loved ones it is critically important to help them to obtain the specialized assistive devices / equipment as quickly as they become eligible through the written script of their physicians & health care agencies. When a patient delays in doing so, they may progress past the eligibility point whereby the attending health care provider can provide such a device.
The following devices (in particular, are extremely important to be obtained as quickly as the need presents itself and while your healthcare provider is still able to approve the patients eligibility (which importantly is before entering into Hospice care) -
Specialized tilt-in space wheel chairs (not necessarily powered because powered chairs will require a wheelchair accessible van), but more importantly equipped to keep the patients trunk aligned in a supportable upright position complete with head and neck bi-lateral supports, forearm arm support troughs, and cushions to prevent pressure sores, etc.
Patient lift and positioning devices that are capable of being safely operated by a single care giver within the particular confines of the patients home. A lift with special slings etc. to address the special needs of an ALS patient relative to the importance of keeping the patient in a stabilized upright position with proper head and neck support.
An electronic communication device suited to the specific projected needs of the specific ALS patient in question.
Please keep in mind our story about “ The flowers that were almost not planted” when considering the importance & potential outcome of the timing in addressing a patients living space & assistive equipment needs.
While there are many websites that can provide exceptional detailed guidance, the following are among the best in providing up to date information
Participating in a “Multidisciplinary ALS Clinic Approach” that specializes in the monitoring and care of persons with ALS can be particularly important in that the clinic can advise the patient and their family regarding the timely introduction of evidence based care practices that can be so very helpful.
Most of these clinics also have support groups that can be extremely helpful in providing practical guidance on planning ahead in a manner that can maximize the patients overall level of care.