Hello all, I’ve turned to TP as it seems the only place I can gain information at the moment regarding the way forward.
Quick background is that Mum was diagnosed with AD in 2001. I became Mums full time carer 9 years ago and I have cared for her on my own successfully in her own home since then. We have gone down the usual steps of deterioration, mum is not mobile, she is hoisted, doubly incontinent, unable to communicate or even smile and spends probably 23 hours a day asleep or eyes closed despite my attempts to stimulate her and mum has been on pureed food and thickened fluids since 2 years ago this June after a visit from SALT.
Things have remained steady until 5 weeks ago. I had collected Mum from respite care and she was fine. The next morning she was obviously unwell. Its normal for mum to return from respite dehydrated so I assumed this was the cause and that it was probably a UTI. I contacted the doctor who prescribed some AB’s. All day mum wouldn’t eat or drink and it was clear that her ability to suck had gone and that she wasn’t swallowing properly so I began spoon feeding her fluids. The next morning (Friday) I was concerned about her as her right arm had become floppy so I called the doc for a home visit as I was now suspecting a TIA/Stoke. Doctor came and we agreed that there was no benefit to Mum going to hospital and that we would wait until after the weekend and potentially Mum would go in on the Monday for artificial hydration and nutrition and then come home and in the meantime I was to concentrate on getting fluids in her and not to worry too much about food. I explained to the doctor that if anything was going to happen to mum that I wanted it to be at home as two weeks previously I had lost my brother to cancer and he had died in hospital and hadn’t wanted to so he knew how I felt.
Over the weekend I looked up all the information I could on PEG and tube feeding and decided that it wasn’t the route I wanted to go down for Mum and on talking to the doctor on Monday he advised that he thought the same. He complimented me on her excellent care at home and said that hospital was not the place for her and she would be better cared for here. He prescribed some Ensure drinks and advised me to keep her comfortable and to contact him if she showed any signs of pain as that keeping mum pain free and comfortable was the most important thing. I took this to mean that he thought we were at the end of the road.
Since then every hour I am am getting some fluids into her. On a rare good day I can manage 900ml on a bad day 300ml. Mum can swallow just about but does not open her mouth for the spoon I just place the contents of the spoon in her mouth and eventually she swallows. This to me isn’t her wanting it I feel that I am making her have it as when I have just left her to see what happens she will wake after maybe 4 hours have a couple of spoons and go back to sleep. A lot of the time she will blow the contents out of her mouth and at other times she will cough and make it obvious that she doesn’t want anymore. Mum will not have the Ensure drinks and will not accept any food stuff at all she just coughs and chokes on it so the only thing she is surviving on is Complan unflavoured that I stir into her squash as it makes it creamy and mousse like and easy to swallow, or fruit puree and custard. I feel that I am making her have more intake than she would like to but because I am concerned about dehydration I feel I have to keep on top of it, but do I? Surely if I take mums lead she is going to become dehydrated? I called the doctor the week before last as I was trying to gain some direction as to where this is going and how I continue but he just reiterated again about keeping her pain free. Mum clearly doesn’t want anything and I believe if I let her have only what she wants she would just slowly decline and drift off but is that what the doctor is telling me to allow? It’s not clear and is causing me distress. Incidentally the week after the ‘stroke/TIA’ when Mum hardly ate or drank it was the most comfortable and lucid I had seen mum in a very long time so I feel then that she was ready to go but I by maintaining the hourly fluids that I am prolonging this?
I will see the doctor tomorrow as he is off today but in the meantime I am seeking any opinions here as I feel quite alone. I don’t know if mum is in the dying process or not. This is the hardest part of the journey so far. The district nurse came 3 weeks ago too as I asked for an air mattress and she asked if I thought mum was going to recover and I said no I didn’t think she would. With cancer you have a pallative care nurse to guide you but with dementia where do you turn to?
Sorry for the long post
Quick background is that Mum was diagnosed with AD in 2001. I became Mums full time carer 9 years ago and I have cared for her on my own successfully in her own home since then. We have gone down the usual steps of deterioration, mum is not mobile, she is hoisted, doubly incontinent, unable to communicate or even smile and spends probably 23 hours a day asleep or eyes closed despite my attempts to stimulate her and mum has been on pureed food and thickened fluids since 2 years ago this June after a visit from SALT.
Things have remained steady until 5 weeks ago. I had collected Mum from respite care and she was fine. The next morning she was obviously unwell. Its normal for mum to return from respite dehydrated so I assumed this was the cause and that it was probably a UTI. I contacted the doctor who prescribed some AB’s. All day mum wouldn’t eat or drink and it was clear that her ability to suck had gone and that she wasn’t swallowing properly so I began spoon feeding her fluids. The next morning (Friday) I was concerned about her as her right arm had become floppy so I called the doc for a home visit as I was now suspecting a TIA/Stoke. Doctor came and we agreed that there was no benefit to Mum going to hospital and that we would wait until after the weekend and potentially Mum would go in on the Monday for artificial hydration and nutrition and then come home and in the meantime I was to concentrate on getting fluids in her and not to worry too much about food. I explained to the doctor that if anything was going to happen to mum that I wanted it to be at home as two weeks previously I had lost my brother to cancer and he had died in hospital and hadn’t wanted to so he knew how I felt.
Over the weekend I looked up all the information I could on PEG and tube feeding and decided that it wasn’t the route I wanted to go down for Mum and on talking to the doctor on Monday he advised that he thought the same. He complimented me on her excellent care at home and said that hospital was not the place for her and she would be better cared for here. He prescribed some Ensure drinks and advised me to keep her comfortable and to contact him if she showed any signs of pain as that keeping mum pain free and comfortable was the most important thing. I took this to mean that he thought we were at the end of the road.
Since then every hour I am am getting some fluids into her. On a rare good day I can manage 900ml on a bad day 300ml. Mum can swallow just about but does not open her mouth for the spoon I just place the contents of the spoon in her mouth and eventually she swallows. This to me isn’t her wanting it I feel that I am making her have it as when I have just left her to see what happens she will wake after maybe 4 hours have a couple of spoons and go back to sleep. A lot of the time she will blow the contents out of her mouth and at other times she will cough and make it obvious that she doesn’t want anymore. Mum will not have the Ensure drinks and will not accept any food stuff at all she just coughs and chokes on it so the only thing she is surviving on is Complan unflavoured that I stir into her squash as it makes it creamy and mousse like and easy to swallow, or fruit puree and custard. I feel that I am making her have more intake than she would like to but because I am concerned about dehydration I feel I have to keep on top of it, but do I? Surely if I take mums lead she is going to become dehydrated? I called the doctor the week before last as I was trying to gain some direction as to where this is going and how I continue but he just reiterated again about keeping her pain free. Mum clearly doesn’t want anything and I believe if I let her have only what she wants she would just slowly decline and drift off but is that what the doctor is telling me to allow? It’s not clear and is causing me distress. Incidentally the week after the ‘stroke/TIA’ when Mum hardly ate or drank it was the most comfortable and lucid I had seen mum in a very long time so I feel then that she was ready to go but I by maintaining the hourly fluids that I am prolonging this?
I will see the doctor tomorrow as he is off today but in the meantime I am seeking any opinions here as I feel quite alone. I don’t know if mum is in the dying process or not. This is the hardest part of the journey so far. The district nurse came 3 weeks ago too as I asked for an air mattress and she asked if I thought mum was going to recover and I said no I didn’t think she would. With cancer you have a pallative care nurse to guide you but with dementia where do you turn to?
Sorry for the long post
