Hello in Nov 2015 my husband was diagnosed with a High Grade Pleomorphic Sarcoma on the front of his left thigh. It has affected his blood, kidneys, liver and the pain affects his heart rate and spikes temperatures. He has been in hospitals for 53 days to be stabilised while having radiation therapy which has now finished. His pain meds are now keeping pain to a manageable level but 3rd degree burns to back leg from buttock to mid calf have made both legs swell up and leak lymph fluid continuously. He is not able to walk more than 10 steps in a walker without resting on a chair carried behind him. At night due to delirium he wakes up and tries to walk without letting anyone know resulting in falls both in hospital and home at our daughters where he has been now for a week and where we have had 2 falls already. At the beginning of the week I slept lightly and woke when he sat up and tried to walk but exhaustion means I now sleep through his attempts. Hints to make him safe at night would be appreciated. Also is anyone has any coping strategies for the management of fluid loss I would appreciate it.
I am sorry to hear of your husband's painful illness, and of the effects it has had on you all in different ways.How drained you must all feel after such an intense few months. Perhaps your hospital or specialists may be able to refer your husband to an Occupational Therapist who could assess and discuss his current needs for safety and assistance? Perhaps hiring a bed rail from an equipment supplier may help interrupt night time walking? I am not familiar with burns care, but the fluid loss and delirium and wakefulness sound like issues that require ongoing, careful medical advice and oversight. Perhaps you could ring a major hospital's health advice line for some immediate direction or request some community nursing visits? I hope you have people around that are able to encourage and support you all. If people offer to help perhaps they can sit and chat with your husband while you get some rest or respite for a little while each day.My Mum had a stay in hospital recently where her mobility,alertness and safety were an issue. We took turns to sleep by her bedside, sleeping lightly to be ready for her if she made a move to get out of bed, very thankful for the hospital bed rails. It wasn't easy nor sustainable, and I feel for you if this sounds like an ongoing reality in your home. Thankfully some medication changes improved her mobility issues and she is home. Dad takes care to make sure she is fairly central to their shared bed, and they do have a small bed rail. Although he does still sleep fairly lightly, he is fortunate that her night time waking has become less frequent and more predictable, which has made it easier.Praying you get good rest and medical direction soon.
Thank you Free for your interest and input to my query. Bed rails were tried by the hospital and they posed a challenge not a deterrent, then he has further to fall from the top of the rails. The hospital then brought in a special bed which lowered to the ground and he was unable to stand and walk from that position. They could then raise it when he was supervised to do dressings and when he needed to go in a walker to the toilet or shower. I have thought about just sleeping on a mattress on the floor but then I cannot get him up easily into a wheelchair or walker from that position. I am pleased to hear that things are resolved for your mum I guess I will take heart in that as it is early days yet.
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