Nat
“I'm so impressed that you can still joke in this situation. I guess it's how we can get through this sh!t. Thanks but underneath the joking is my grief/anger as well. I use this as a way I can talk some of the surface stuff and get on with day to day stuff while Lorraine’s eventual death draws near. It helps me.
Re palliative care team - start planning for the worst so that you have a system in place as his health progressively deteriorates. After Lorraine came out of hospital (from seizures) the palliative care nurses as well as occupational therapist from hospital did a home inspection gave some advice. Note that I do have the advantage of being male and taller than Lorraine so I can do some limited carrying of her, but even so, she has deteriorated to now a dead weight so she is now difficult to manoeuvre, I change my way of getting her around the bedroom as she deteriorates - presently I try to use a commode shower chair to transfer her from bed to a sitting chair in the bedroom. At worst there is a lifter that I can also use but the lifter in the bedroom as well makes for more work to manoeuvre furniture around . At one stage I thought of putting in a handgrip in the toilet for Lorraine’s use but now she not getting to the toilet at all. We are now reliant on the incontinence pants and also an extra insert in the incontinence pants to further soak up the urine for when she is in bed during the night, I still can find urine on the bed base sheet but my major concern is to protect the quilt as that is hard to clean (there is a Kylie sheet and plastic sheet provided by palliative care under the bed sheet for protection of the hospital bed mattress which has its own waterproof covering)
You will need to find your system that will work for you, Denis and within your house and in that order – you must look after yourself otherwise if you mentally/physically deteriorate its respite or if not able hospital or a nursing home for Denis.
Ps suggestion- the incontinence pants should help contain some of the defecation/shit occurring especially if it is watery
Re shower we do not have much room to manoeuvre in the small on suite bathroom so use the main bathroom (but it is a shower /bath set up) where I use the toilet with the commode chair over the toilet and place a few bath mats around - approximately a 1 metre or more away to limit the spread of water. I got a shower hose extension from Bunnings hardware shop that attaches to the tap in the bath (if you try to get one have a close look at the end of the tap to ensure that you get one that will fit (the tap end))
Hopefully you will be able to get from palliative care (they supplied us a commode shower chair, a walker, a toilet seat with handles that sits over the toilet approximately 150 mm higher than the toilet - so that it I not such a big distance to sit down and then stand up from the toilet) From the hospital and after paying $50 hire fee I got a lifter and a hospital bed (bed that has ability to lift either end of the bed mattress) the hospital delivered the items to our house. See what is available for you, enquire if you can get the same from your local hospital or elsewhere.
It’s OK to allow him to realise that you expect him to get worse, it may free up some stuff for him as well so that he will know that you will be alright with the enviable outcome and can talk with him about it. It’s scary and I have moved through it somehow each time although I have a woman who is highly self-aware and she has a belief foundation that sustains her (well, so I believe that she is using belief and is still being sustained - I can’t tell she can’t communicate for some time and her cognitive mind is mainly gone )
(Although today I thought that she has been angry with me for doing something (not answering yes/no questions and her generally not looking at me) but with her non ability to talk, and her mind wandering off it’s been frustrating. I am backing off to allow some time and space to occur from whatever it maybe is ??????) She finally said no, that she was not angry with me when she had a brief period of cognition & she indicated that she was frustrated not being able to talk......all said with 2 words - no and yes, with some facial expressions)
Re your comment that “It's nice that he doesn't have bad BO hehehe” I image with you being “I'm so tiny comparing to my partner.” that your nose would be somewhere at least his arm pit level then a very lucky you for being at his ‘arm pit level’ with no BO.
The “ stand and perve” I assume is remembering of your lustful days gone by………grief and loss is a horrible thing and encompasses so many aspects of our lives (the standing bit I don’t understand, but that may be personal/intimacy experience). Now just on reflection, I am having a different subtle insight into what you may be referring to…… hahaha if so - life can be warm and fun
Ps There may come a stage when pills cannot be easily swallowed. Some pills can be broken into small bits and/or crushed I have been told that custard is a gone medium to mix the crushed pills into its slippery. Check with chemist which pills can be crushed though.
Hugs
Geoff
