February 22, 2001

This is an account of a 78 year old woman who looked after her husband who was 79 prior to his recent death. We are keeping their names confidential.

To: Kingston Frontenac Council on Aging

A year ago in January, my husband was admitted to Kingston General Hospital (KGH) diagnosed with Myelodisplasia. During his two weeks in hospital, he contracted a serious infection requiring antibiotics. He was discharged with a "pic" line and antibiotic pump.

The VON I-V team came daily to monitor and flush the line. The pump was battery driven and required reprogramming when it beeped. It was extremely stressful for me as an untrained health care person and as an emotionally involved partner, to look after him under these conditions during the long periods of each day when I was on my own.

His personal care was a problem as I was not strong enough to get him in and out of the shower and no help was available. The request to CCAC was refused so I contacted an agency to make my own arrangement which I paid for privately. When CCAC learned that I had made this arrangement, they reversed their decision and funded this part of my husband's personal care. This service was required for about a month.

An experimental drug was prescribed by injections which I was able to give him.

At the end of the course of antibiotics, 13 weeks, his care was transferred to a VON palliative care nurse who came three times a week to monitor the "pic" line which remained as he required on-going blood transfusions. The blood transfusions were given monthly, at first but became more frequent over the summer. I was able to drive him to KGH for these by transferring him to a wheelchair at the hospital.

He also required oxygen more frequently as time went on. CCAC provided us with many mechanical aids including an electric bed, walker, diapers, etc.

Up to this point we were able to manage fairly well, but it became necessary to have help at night and the VON requested a night care giver who would do personal care in the morning. During the day I was on my own and found it impossible to lift him to diaper him properly or to move him up in the bed. It was an impossible situation.

I asked for more nursing care round the clock. We were prepared to pay for this. Eventually five days before he died in December, we had two wonderful RPNs.

To conclude, although emotionally stressful, I feel we had good help from CCAC and the VON for the first eleven months. The last month was extremely stressful, not only trying to care for a dying man but the added stress of losing one's husband. As the primary care giver I was not physically strong enough to do the job.

The home care aids were not well enough trained to do the professional nursing tasks that were required. I did not need help with housekeeping or meal preparation. I was able to give my dying husband help with meals and mouth and light untrained nursing care.

In closing, I would like to make a recommendation and ask a question.

Recommendation: In ascertaining the need for professional nursing care and personal care as well as the separate need for homemaking, it is vital that the CCAC case manager discuss the type of medical and personal care that the patient requires as well as the need for homemaking services with the family care giver. In this way, expenditure of funds will be more appropriately used.

Question: CCAC requested our private insurance company policy number before providing the RPNs. If the cost for this service was billed to my insurance company, why did I not get the invoice?

This has been difficult for me to write but I have done so in the hope it may of some use.

Sincerely,

"JB"