Mum has yet another uti with horrendous hallucinations which are so upsetting for mum and me . She now sleeps most of the day and night and when she wakes its hard to grasp what she says and doesn't make sense or is muttered.
Since Wednesday last week mum has only eaten breakfast daily she is refusing all other food nothing I try and tempt her with works it's so heartbreaking seeing her give up in this way. She also is taking in less fluid as no longer wants a cup of tea and will only have a few sips of water or possibly cranberry juice all day I think her max intake for fluid is about 400ml a day !
Should I keep trying to tempt her to eat or is this her way trying to beat PSP ? Should I also call the dr/hospice/dn to let them know too ?
A couple of her carers who she h aunt seen for a week or so have commented that mum has lost weight I hadn't noticed seeing her daily.
We finally triggered for the CHC assessment and I'm having to write a diary of what's going on to provide proof/evidence of how she is .
Written by
Sophiejo
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So sorry you are going through this uti and hallucinations, it's frightening, I know. Her appetite may have dropped from the uti or from the progression of the disease. Your hospice should help you through this. Definitely call them and explain all that is happening and they can help you through this. Thoughts and prayers to you.
Call the dr immediately . They need to know of her uti she may be able to knock it out pretty quickly with anibiotics! She should be eating and drinking too....she needs a doctor!
Thanks the dr is aware of the uti and mum is on antibiotics but they don't seem to be touching the hallucinations side this time not sure if this is another progression of PSP ?
I'm going to call the dr and hospice today to see if they can suggest anything but I know she has already said no to a peg ( she can eat normal foods as doesn't choke ) and will not take the supplements
I'm sorry. I think for me if I were in a terminal situation . it would be not so much the will to live as it would be the will to get to heaven. I would not try to increase my chances of death nor would I try to increase my chances of life....when it's time to go, it's time to go . simple as that.....
Do not feel guilty or even terrible about her decision. Just embrace what time you have left and find comfort and joy in her life with you.
What meds is she taking? For PSP patients, the most common cause for hallucinations is an adverse reaction to a medication. That's why the neurologists who are most experienced and knowledgeable about PSP refrain from sending their newly diagnosed patients home with ANY prescription! Remember, as of now, PSP is still "untreatable." Every patient is different, and reactions to a drug can differ. In another PSP/neuro forum where I've hung out for years, virtually ALL carers/loved ones of patients with classic PSP-r (Richardson's) reported their patients experienced bad hallucinations when put on synthetic dopamine. Meanwhile, =CBD= patients seemed to benefit at least temporarily from use of a dopamine product.
To illustrate the uncertainties re. drugs and PSP: My late wife (psp-r verified by autopsy) occasionally had a problem with sleeplessness in late middle stage PSP. Our hospice nurse arranged for her to have a small prescription of Ambien for her. It is one of the mildest, safest, most-used sleep aids in the market. She took a single pill. That night, she woke up the house, screaming and terrified about "a little man who lives under the roof, and we need to leave before he gets here!" Amazingly, she was speaking quite clearly! We got her to calm down, explaining she had a bad dream, etc. She nodded, as if she understood and accepted the explanation. It was the last med she ever took. In time, most of us forget our worst dreams. She didn't. Until the early morning two years later, when she never woke up ever again, that hallucination remained a living reality in her memory.
I think you are right to wonder if pushing food is best. Let her choose. We all think that feeding is how we care and show we care, but after a point, the body isn't processing food efficiently and consuming more doesn't help, and may hurt. We all speak of falls and pneumonia as being the main causes of death with psp, but "failure to thrive" is a very common factor. And we each have to consider, over and over, what are we fighting for? Is now the time to let go? We are all so geared to fight every step of the way, for our loved ones, but I know I wouldn't want it for myself. Love and peace, Easterncedar
I agree with EC, as usual, she's taking on the Heady roll lately. Just a thought though which you've probably already thought of. As she's confused just tell her it's breakfast and give her a it a few times a day. If it's porridge it'll be sweet and contain milk so some fluid at least and it may help her gain some strength and put your mind at rest if she eats a few spoonfuls. other than that try to just accept her wishes but make sure the medics are aware of the situation. This is something that you should be supported through. All the best
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