Love’s Caress

The room was a good size, very generous by comparison to normal hospital rooms. Even when compared to other rooms in the Hospice its size and location made it a haven. The Hospice, which was created out of an imposing Queen Ann revival house (originally commandeered under emergency legislation when the surrounding Army hospital was being built in 1940), was a welcoming place, but there was much going on all the time. There was the usual medical activity (albeit with much less of the ‘clinical’ fuss that is common in other hospital settings), as well as a constant stream of visitors for the ‘residents’, who often brought meals and stayed for long periods, or even overnight. It was good to be able to withdraw at times. To rest. To be together, to be alone.

Over the weeks that had now extended into months, they had settled into a familiar pattern at night. It was almost a ritual. Because of her limited movement things had to be arranged so they could be at hand, as needed. They had worked it out, and he knew where things needed to go. The over-way was always on the left side of her bed, parallel, not perpendicular. A thick plastic cup, from the Hospice kitchen, filled with ice chips, and the smallest amount of cordial syrup, and a bendy straw. The jug, with water already poured into another glass. A small tetra pack of Sustagen…all within easy reach. On the right, the locker, moved on its castors to be within range, angled to the bed. On top, the Bible, reached for often and read, again and again. The CD player, ready for ‘play’ to be pushed. Pen, paper, glasses case…the usual things. And of course the phone…the lifeline to family. All to hand.

She loved the hot towel massage. Each evening, the nursing staff came, offering to minister gently the tender relief to limbs so debilitated with pain. Lavender and citrus filled the room, rising from the warm water. The nurses loved her, and she them. Ministrations so needful, and so gratefully received.

Then, the settling into the bed. A carefully orchestrated process. Bottom wiggled back. Then legs together. Turn and lift with gentle assistance. Grasp the hanging triangle, shuffle further back against the pillows and the raised backrest. Bed controller and call bell secured to the sidebar and within easy reach. iPod set and left on the quilt. Life was the Voice.

they would talk about the normal things. Her washing that he was taking home. The things he should bring tomorrow. Who would be visiting the next day. Medical appointments, radiotherapy (for pain relief not cure), which friends would transport them. It was all needed. And all so sad. But it was given from above, and they knew that too.

“My world had grown very small,” she said one night. Indeed, from one point of view it had. From another, it had never been larger. In her weakness, rivers of live and love flowed from her: Her small world was touching the nations.

One night, towards the latter days, he was getting ready to go home, after spending the day and evening together. By the time for the evening ritual all visitors had gone. It was their time. All things had been arranged, in her large, small world. Before he left, they held hands and prayed, and he leaned over to kiss goodnight. She, cosseted in pillows looking up. He, stooping over the edge of the bed, gazing down. Eyes locked in a gaze that held within it over thirty five years of love. Held by Love. Kept in theirs, by His.

Suddenly tears. Flooding down his cheeks as they held the gaze, and they both knew that soon, she would be gazing on another’s Face, and he would feel the absence so deeply. tears fell from him, splashing her pillow. She reached, tender caress of love, wiping them away. Stroking with open palms the face of him who felt so ill-deserving. they both knew and believed The Promise, that there would be, and is, a day when tears are wiped away, to be no more mourning, or crying, or pain. But here, now, the tears were real. The mourning and crying were real. The pain deep, real, constant.

The river of love flowed from her out to him. His face, embraced in her hands. Her face, so near to his. Both knowing it would not be for long this way. He was leaving to return to their house in the suburbs. But soon she would be leaving for Home.

“O, Sweetheart! i wish I could tell you how much the Father loves you! He loves you so very much! O’Sweetheart, the Father loves you. He loves you.” the gaze unbroken. the hands firm on his face. The word from her soul to his, deep calling to deep. From her eyes, joy. From her voice, hope. From her touch, love. The words from her lips came from heaven itself. She was, sin some sense, already there. Not wishful thinking – but a truth sure and steadfast. Both knew it was only Love that could hold them. It did. He does. And she knows it now, face to face, with him who loves them both.hospice

 

 

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About this site

This blog is designed to help family and friends who are caring for a dying relative or friend at home. This can be a very meaningful experience but at times can be terrifying. While most of us have experienced grief or loss of some sort, being confronted with our own mortality, or the death of a loved one, is something we find difficult to talk about. Often the diagnosis of cancer leads to multiple hospital admissions, specialist appointments and cycles of chemotherapy and radiotherapy. For some, this will lead to a cure; for others, a remission of their disease; and for others the disease may progress despite the best in medical intervention. Whether you are caring for someone who is young or older, this can be a challenging and confronting time. Many people don’t want to be cared for in hospital–or even a palliative hospice–but as the end approaches they want to be cared for in their own home with their family and friends around them. Some will want absolutely no further “medical” interventions while others will be interested in short hospital visits for interventions like palliative radiotherapy to bone to reduce pain from cancer for example. Many people are scared of hospice because they think “that’s the waiting room of death.” Others are scared of even a short hospital visit because they think they “will never come home.” Whether the person you are caring for is a relative or friend who wants to die at home, it is possible to provide good home-based care. Some relatives worry that the care they are giving may not be as good as hospital care, but what I usually see is that friends and relatives are able to provide for their dying loved one in remarkable ways. It is not an easy task, and sometimes there is just one person at home providing the care that it would require a team of nurses to do in hospital. This means that sleep is interrupted, friendships and social life changes, and suddenly you find yourself operating as a nurse, a nutritionist, a physical therapist and a counsellor as you get to know medications, dosing times, pain scales, bowel care and mouth care. The wonderful thing is that in most places there is access to support from trained palliative care professionals–either in person who can visit at home regularly–or via your GP or even through a telephone call to the nearest hospice. Where as previously many aspects of care required a hospital admission, these days it is possible to provide a range of interventions at home including oxygen, special medication devices to deliver fluids or medications under the skin, nebulisers and humidifiers. Some GPs or palliative medical specialists are happy to do home visits to perform specific procedures and provide expert assessment and management plans to help keep your loved one at home.

One important thing to say at this point is that sometimes–for reasons of pain or other symptoms–or because of carer fatigue or injury–a hospice admission becomes necessary for end of life care. This is not a failure. Families often describe the relief of going to hospice–even when their loved one has wanted to try everything possible to avoid it: Letting the nursing and medical staff take care of your loved one at this special time can mean that you are able to simply enjoy being a son or daughter or friend again while others look after the physical care. Hospice might mean that you are able to get some much-needed rest and be refreshed and in a much better frame of mind to cope with the demands of this time. A hospice admission might also allow for fine tuning of medications which can sometimes be difficult (though by no means impossible) at home.

But whatever the case, I hope the information provided here will help answer some common questions and concerns about caring for a loved one who is dying at home. You will find information here on caring for your self, on managing various symptoms such as shortness of breath, cough, panic etc. You will find information on when (or if) to think about hospice care, about what to expect in the hours before death, and what to do once your loved one dies. You will also find information on grief and bereavement and what to expect in the year following the death of a loved one.

Questions?

If you are unsure about something or have a specific question, please feel free to make a comment or ask a question. These may take 7 to 10 days to be addressed, but if there are a number of questions around a similar theme, the material will be included in the appropriate page. All identifying details will be excluded.

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