How much worse can/will it get :(

[Jodi999]

My MIL can't bear any weight anymore and needs 2 people to lift her from bed to transfer device and back. She sits on her recliner all day with TV on but she's indicated she can't see it, just hearing. Eating is getting worse by the day, lots of choking and struggling to drink, she cant look down as her neck is stiff. Speech is very limited, just a few words. Her face looks frozen and she can hardly move any part of her body. She constantly makes loud wailing sounds.

I know no-one has the answer, only time will tell but can't help to wonder how much worse can it get. She got declined for chc funding as they said she doesn't require anything a nurse would have to do. She's only gonna get worse until it doesn't and its very hard to accept.

[David750]

Hi Jodi999, yes this is very hard for you when choking becomes regular. The smoother the food (through liquidising) and liquids thickened, the easier it will be.I had a two speed liquidiser (make sure the blades are sharp, i had to buy a new one) - liquidising stews from cold worked for a while, when cooking restarted I liquidised again when hot (I had mugs, 300ml, which took the head of the liquidiser, heating in microwave). This gave a smoother consistency with reduction in choking. Eventually feeding times extended as my wife took ages to swallow and often failed to retain food with her lips, dribbling the food. This is the hardest time so you need a Speech & Language Therapist to advise and with a reduction in consumption a Dietician to prescribe a fortified food to supplement. I wish I could give more specific advice but sadly every suferer is different. I do hope some of this helps

[Marazion]

sorry to hear your family is impacted by this. Everyone will be different I’m afraid. But I’ll share some of the things mum is experiencing which you don’t mention - fully assisted with all food and fluids with thickener and minced or puréed food to prevent choking and has led to weight loss. I don’t know if you’ve had the discussion about PEGs in the future and whether SALT are involved for communication and nutrition. You mention two staff for transfers your mum maybe able to cooperate with a stand aid but in the future she may require a full body hoist. Mums falls risk remains very high. Skin lesions and pressure requiring nurse monitoring and being turned regularly day and night. Support with medication to ensure it’s taken safely and liquid medication rather than tablets. Communication unreliable - for mum it’s yes or no only but she will say yes mostly when it’s clear the answer would be no. Sleeping more with more time in bed. Cognitive impairment has really impacted mum too so not orientated to time or place and impacting her short and long term memory unclear if this is PSP or another condition. We’ve recently updated her respect form too so something to consider now. We were able to secure CHC funding but it wasn’t easy. Do contact PSP association if you haven’t done so they have a fab helpline and regional support groups. I hope this experience helps.

[REOC]

hi Jodi999, sounds like we’re in a similar place although we got CHC awarded a day after we applied so maybe you could try again? Has anyone helped you with the form? We had the SALT team and the district nurse who helped us a lot. Now applying for PHB as there was no agency nearby who could support mum’s care. She’s in Essex - maybe it depends where you are in the country how willing they are to fund? Mum now considering PEG feeding as she is constantly choking and very low on fluids so frequent UTIs. See if there’s any way you can access more support.

[Dosco]

My wife died of PSP the past November after a struggle of at least 5 years.For the past two and a half years she was in continuing care as I could no longer care for her and neither could home care.

Towards the end in the last six months she found eating pureed foods, and drinking thickened juices prepared by dieticians to be impossible and lost considerable weight. She was unable speak, move her eyes, or her head although she was cognitively intact.

My wife was a courageous woman who endured what no human should. The truth of the matter is with PSP there is no improvement on adjustment to the progression.

[Troubleandstrife]

reapply for CHC funding. Get connected with a hospice charity if you can. They could do a care assessment and symptom control and possibly help you get the support you need. My husband was prescribed very low dose micro dose morphine for the moaning. This is so hard and you need support.