Extreme changes in short time

[mmardesm]

My husband has PSP and dementia, diagnosed 7-8 years ago initially with NPH. He had many falls however in the past week he has fallen 2-3 times a day and taken to the hospital once. Also is sleeping most of the day. Incontinence has gotten much worse. Some of the days he was disoriented and confused. Has anyone else experienced a rapid decline and these issues? Is this the final stages? Any advise would be appreciated.

[easterncedar]

Really sorry for your troubles. Sudden downturns are pretty common, and may be just the disease. We experienced all these symptoms more than a year before the end. My guy would dip, then stabilize, then dip. It was impossible to know what to expect day to day. That said, a very common treatable cause of a dramatic decline is a UTI. If he hasn’t been checked for that I would suggest he be tested.

[mmardesm in reply to easterncedar]

He has been tested for UTI - negative. All tests normal. I thought a UTI or pneumonia was the issue but no.

[Hidden in reply to mmardesm]

I totally agree with you... so many issues to investigate... keeps us wondering as each day can be so different with new & old challenges. Sending hugs... Granni B

[LuisRodicioRodicio]

Hi mmardesm!I agree with "easterncedar"

These are our information and particular experiences that could be useful:

Last 6-12 months

- Patient is too tired, or the effort was too exhausting, to get something to eat or drink himself.

- Speech has mostly disappeared.

- The patient has a rapid weight loss despite the fact that he usually eats in quantity and quality. Usually in this phase the patient takes their meals in the form of puree

- In the final phase of PSP, began hallucinating They ask to sit on furniture that doesn't exist; ask to get the red box with Santa shoes off the dining room table, etc. No people or animals as far as I know. Our neurologist suggested that if they don't bother her, it would be best not to attempt to treat them. If something isn't going to make a material improvement in their quality of life, then let's not do it...or worry about it.

Our case, last 3 months:

In our case, the final stage is characterized by sporadic but increasingly frequent irregularities in temperature, blood oxygen level, pulsations, blood pressure, also erratic irregularities on bowels and urine. Controls are made and recorded daily. Skin problems are also more frequent. It is normal for the patient to lose weight and sleep more than 15 hours / day.

All the food was passed through the mechanical arm so that it becomes pure consistency and we apply it with a small plastic spoon that detects excess temperature or a food syringe, always in small doses.

We insist on vegetables, seasonal fruits, fruit yogurts, custards, ice creams, puddings, soft tortillas, eggs cooked after 5 minutes.

Meals were very slow on time and required a lot of patience.

Sometimes refused food and also, although less, liquids. If the patient refuses the food, the doctor recommends not to insist too much and not to force the intakes.

Hydration is ensured with a subcutaneous needle with which an extra 500 ml / day is introduced drop by drop, alternating physiological serum and glucose serum. Flavored jellies are another interesting contribution of liquid. Between the water contained in the meals and the serum we supply the patient around 1 liter of water / day.

Hug, luck and courage.

Luis

[mmardesm in reply to LuisRodicioRodicio]

Thank you for the information. Food is refused very often and sleeps 14-16 hours each day. Fluids are difficult also and not willing to drink. Irregularities in bowels and urine are definitely noticeable. Complains he is cold even though room is very warm. The change happened so quickly, all within a week, that it was difficult to associate with the psp. I was certain there was an infection either pneumonia or UTI. brought to the hospital but all test were normal - no infection. Has loss weight and difficulty focusing. Seems that the psp symptoms are overtaking the person.

Again thank you for info and support.

[journeyofjoy in reply to mmardesm]

I'm sorry to hear this. As you can see from the posts, everyone is different. Sleeping this many hours can be an indicator of last stages for some. I would get him a wheelchair or some type of device to stop the falls. Those can be so dangerous, for both of you.

[AJK2001 in reply to LuisRodicioRodicio]

Thought we hadn't heard much from you recently Luis. Sorry to hear things are as they are. Hope you are looking after yourself and hugs, luck & courage to you. You were one of the first people to reach out & offer support to me & it made such a difference. xxx

[LuisRodicioRodicio in reply to AJK2001]

Hi AJK2001,Thank you for your words.

Your words and being useful for PSP caregivers are my best gift.

Hags and luck.

Luis

[jabberwocky45]

The answers were useful to me too Bill eats really well loves his food and even the choking with fluids has not got worse. Incontinence is a problem. Have to give laxative and deal with consequences and then a quiet few days. More falls especially out of bed. Have had a bed lever attached to a hospital bed and invested in an alarm mat. That works really well. I went for a German make from Amazon which was a very reasonable price in comparison to some - it seems if you had Alzheimer prefix to a mat it doubles the price! It's really just the same as a mat you might tread on on going into a shop!I think I blamed lockdown with no daycare at first but realised it was probably the disease.

I hate it with a vengeance. Bill sleeps a lot but stays awake if we have a visitor. Nighttime is often a nightmare - Every hour on the hour! Then the odd night we get a reasonable few hours. The spatial awareness is so noticeable - you can see him imagine a chasm in front of him and he pushes his frame yards ahead of himself.

I'm sure you all know it

I don't come on here very often - but when I do I can't stop! I don't come on I think because I don't want to know what's next!

Thanks for listening - at least he enjoyed Christmas Day with daughter and granddaughter

[AJK2001 in reply to jabberwocky45]

Sorry to hear how hard it is at the moment. I understand the laxative side so well! Mum would easily go a week ! And then once she'd gone, she didn't think she needed the laxative, as "she'd been". The lengths of persuasion we had to go to to get her to take the laxative every day to keep her "regular" (it wasn't regular but better than if she didn't take it everyday) rather than wait for a week & then have to use high doses of laxative with the resulting discomfort & explosive effects!So glad you were able to have Christmas with family. xxx

[AJK2001]

I wouldn't totally rule out UTI. Mum had a low level infection that wasn't picked up on testing but did respond to antibiotics. Might be worth getting another test done.

[Rembass]

After years of misdiagnosis, my Mom was diagnosed with PSP in February 2019 and passed away from PSP in February 2020. We were often shocked by the sudden downturns that would happen during my Mom's last several months of her battle with PSP; things would seem stable for a period and then out of the blue, a sudden new concern. She never totally lost her ability to speak (albeit very quietly) but dealt with incontinence and bowel issues, confusion/hallucinations and we needed to rely completely on a transport/wheelchair for her last two months or so. She was treated on/off for several UTIs that would respond to antibiotics, but return. We had been working with a palliative care team and it was this same day last year the decision was made to transition Mom to in-home hospice, as it was both my wish and hers to be at home until she passed. My heart goes out to both you and your husband.

[Debspottery1]

Your statement rings true in that the symptoms overtake. We have just about all symptoms now.

Things fluctuate.

Just want to express thankfulness for all who share here. It feels very isolating at times to be the caregiver who has to remain strong. I know I have angels. My faith has grown and my heart has adapted. I have a husband who is in year 6 of PSP and is in denial. A strong will to beat the disease but everyday some new symptom such as FOG. We lose hours each day. When the realization does finally take hold I don’t know how he will react. I got him the book PSP Chronicles. It’s difficult for him to read so I highlighted the most significant portions. We are very different so if it were me I’d want to do research. With him I guess he thinks knowing what’s coming is a bad omen. I did join a support group daughterhood.org. The podcasts are great. Research Teepa Snow if you want pointers. God Bless everyone!