A routine seems to help.

[AlmaJ67]

So for the last 3 years I have not been able to have any type of routine. My husband Mr C has been eating the same foods and drinking the same drinks, watching the same shows, going to sleep about the same time etc. So I decided to try and start a routine. He is up by 7 am, has his breakfast by 8 am. I give him a snack around 11-1130 am. Than I make him take a nap at noon, usually it's an hour, but some days it's as long as 2 hours. Depends on him. He did not want the nap at first but by the second day he was telling me he wanted to sleep. So after his nap he gets another snack about 2:30 pm. And he usually wants his dinner about 4 pm and is ready for bed around 5-5:30. He has been on hospice for 3 months. so he gets morphine and lorazepam at night for sleep/ agitation. And he also gets haloperidol in the afternoon if he is agitated. He was taken off all regular medications after they took him off the Parkinson's medication sediment. Because psp seems to lower BP naturally, he no longer needed his blood pressure meds. He is still able to use his walker most days to go a very short distance to the restroom. But outside only the wheel chair. His food choices these days are, yogurt, ensure strawberry, ice cream, eggs, toast ( cut in small pieces) sausage patties ( also cut in small pieces). And chocolate milk. These are HIS daily choices. Once in awhile I can get him to eat something different for dinner, but not often. I let him have whatever he wants. As he said when he was able to talk above a whisper " I want what I want" " what's it going to do kill me".

He is at this time wearing depends briefs at night and using a urinal. But things maybe changing very soon. Because I am changing the bed pads 2/3 times a night now.

He also has to be strapped down if I have to go outside to the trash can. And I have an alarm in case he tries to move without me near him. He can not be trusted to listen, it's the psp. Strapping him down even for a few minutes is very hard, but better than having to call the fire department for help again. What works for you as a caregiver? I know that everyone is dealing with this in so many different and yet the same ways. Would love to hear your stories.

AlmaJaneKelly67

[jzygirl]

Hi Alma i think a basic routine is what they all desire. For at least 3 years i have got Brian up at the same time every day and he goes to bed at roughly the same time every night. And i also think a basic routine is good all round. Brians daytime nap is a bit more flexible because we sometimes go out and he might miss it altogether or go later. He hasn't attepted to get out of his bed/chair for at least year or more so i am able to leave him for short periods of time.

Brian is unable to walk and he doesn't even attempt to now so i dont have to strap him down thank god for small mercies.

Janexx

[AlmaJ67 in reply to jzygirl]

Jzygirl May I ask how old Brian is? Mr C will be 71 in January. He tries to get up on his own and falls.

[jzygirl in reply to AlmaJ67]

Brian is 77 and i am 55. Brian has not walked for about a year and he shows no interest in doing so. He is totally reliant on others for everything. He can just about feed himself one handed so everything has to be cut up fine. But he does enjoy his food and demands three meals a day plus snacks like icecream and chocolate. Janexx

[AlmaJ67 in reply to jzygirl]

Sorry to hear he is no longer walking at all. I really am dreading when this happens to Charles. But I will deal with it also. Charles feeds himself ( very messy) but at least he tries.

Alma

[Yvonneandgeorge]

Alma, my husband is slightly different, he won't get up until 11 o'clock, he eats mashed up food, nearly the same dinners every week. George is still having his blood pressure tablets. I can go out to the trash, he does not really move, he is in a wheelchair most if the time. He does not listen when I talk to him, it is very hard. Had a bad time a few weeks ago, he was standing on the hospital bed, it really frightened me. He keeps calling me all the time, and asking me to help him. This PSP is so hard and stressful. Sending you a hug. Yvonne xxxxxx

[AlmaJ67 in reply to Yvonneandgeorge]

Oh Yvonne I can not imagine the fear when you saw George on that bed. Charles fell through the screen door yesterday and I had just sat him down in his chair and took about 10 steps away and heard him hit the ground. He was sitting in a chair next to the door so he could look out. He was fine but not the door.

Alma

[Yvonneandgeorge in reply to AlmaJ67]

Alma it is a nightmare xxxx

[Amilazy]

Hi Almajk67, I have never thought about it before you mentioned it but I have had a similar routine imposed by PSP with our loved ones. The PEG feeding also imposes a fairly tight time restraint with 4 feeds to be fitted between 0800 and 1900. The routine can be mind numbing but it provides a framework for the day and though sounding boring it allows M to be comfortable.

Best wishes Tim

[AlmaJ67 in reply to Amilazy]

Tim sounds like you have the PEG down. Charles has refused to have it or anything that would help him live longer. So it's all about seeing to his needs daily. M is very fortunate to have you.

[abirke]

Day in the life of B starts about11 am lately. either bacon sweet roll and english muffin, or some form of hot cereal. 3x to the loo between cigarettes. Then a sit down to his favorite recorded book. MWF try to make the gym at 12 or 2:30. Lunch comprised of sandwich and fruit and chips. Night is whatever dinner I have cooked him. bed about 11:00 pm. In between all this time , he has fallen about 3 - 6 times. He uses his walker but he is losing the use of his feet more and is really seemingly forgetting how to walk. upper body knows what to do and does it. Lower body frozen in fixed postion. Choking and high mucus becoming more prevalent. Meals have become a more guarded event as I try to chop everything into half -bite pieces. Learning how to thicken liquids . He's not going lightly there either......though he has accepted thickeners more than I expected. sleeping is interrupted with trying to cough up and spit in a "spit-cup". tonight is very difficult. Up 2 to 3 times in mid night. voice is a slur and though I try to talk to him and illicit some conversation; Often, it is a quiet room with us in it. Bathroom routines are mostly his . Brushing teeth is becoming ever more difficult . And seeing anything is only in the peripheral and must be presented above the brow line for him to get a glimpse. He lost his ability to read about 18 months ago. He was diagnosed Spring of '13 . He is 55. Behavior has never shifted to depression or agitation. Though he doesn't hold on to the things he has learned to walk or stand or sit! and thus falls.

Our life is megaroutine. And what is not routine is only being changed/ruined by PSP.

AVB

[easterncedar in reply to abirke]

Only 55. That's so hard. hugs to you. Ec

[AlmaJ67 in reply to abirke]

Only 55 that is so young. And so many things seem to be happening so quickly to him. I used to be up all night helping him to the restroom and trying to find something to help him sleep. But since hospice has come in, they have made it easier but still stressful. It was all the falling and the choking/coughing that made the doctor called in hospice. But I still can not leave him unattended at all.

I remember the stage you are going through, the he can walk sometimes, but usually falls. Makes more of a mess for you to clean up after, but you want to let him do it himself. He wants to eat, but he doesn't want it cut up to much, ( when really it needs to be mashed not cut). I feel so bad for them and also for us. Great BIG Hugs to you {{{~}}}

[abirke in reply to AlmaJ67]

So sad. I brought him a hot fudge Sundae tonight. He could not eat/ swallow it. Instant mucus and choking. My poor B. his face is looking so I don't know forlorn? Conceded to the fact that PSP is winning...and no one has called us back from speech...though I know she will not be able to do much more than offer us some exercises....

Thank you for the hugs I'm sending some back to you {{+}}{{~}}{{X}} :)<

That was Fun!

AVB

[abirke]

Yes and I think I can remember stuff going on as far aback as '09 (51 years)and definitely '11! How old is your mate?

Thank You for the hugs....dad just fell asleep after half coughing for two hours.! hope your night is better.

AVB

[AlmaJ67 in reply to abirke]

The coughing that he has is he on any meds that could be causing him to have the cough? I ask because Charles was having then and they gave him morphine and lorazepam and it stops right away. Charles is 70 and will be 71 in January. But I can go back at least to 2005 and I say at least, because I can remember little things that I would catch myself saying, hmm that's odd. We have been married for 52 years. So I know a little bit about him. Grins ;)). Sorry to hear about the ice cream sundae. They also have medications for the mucus. Ice cream is the only food that Charles can have with no problems. And as for speech, that's a hard one. Some days it is clear and other days barely above a whisper. I notice it depends on how tired he is also. He has been sleeping more this last week. Between 15- 19 hours a day.

You can also find the exercises on YouTube it is the same ones they use for Parkinson's. Hope some of this helps, I know you fix one thing and another pops up. This is the hardest disease to keep up with. I think everyone on here and also on the psp caregivers site. I couldn't cope without all of you.

Almaxxxx

[abirke in reply to AlmaJ67]

Thanks Alma,

Yah when he told me he was in a state or something and that the coughing wasn't from mucus......I was wierded out. How does Lorazapam help with this....does it help with tics and the like? and Morphine...bam!

52 years...wow we've been married 30! Thank you Alma. I know, I seem very reliant on this site. Just to be able to talk in whatever mood I'm in . Especially the blues....noone wants to talk about it when I'm sad and I certainly don't want to bring my kids down about their daddy....so Alma it's me and you and allllllll us other kids "playin on this same playground" tryin to get in that swing or bein pulled off the slide by the bully , PSP!

I've got so much to do today......It's not PSP pulling me away, It's my responsibilities!!!!!

Have a good day,

AVB

[AlmaJ67 in reply to abirke]

I'm not sure but it's on the list of medicine from hospice. Along with morphine and haloperidol. These are the main ones they use. So when Charles gets agitated I give him .5 ml of haloperidol. And usually that takes care of him he calms down. But I only give it to him when he lying down. And the coughing stops quickly with the mix of morphine/ lorazepam.5 each.

And your right it's just us to help each other. It is so hard to explain to others as to what is happening. It's always " well what causes it". Hope you get some rest. I had a nice day today a friend to me to lunch and a long drive in the country. Than my daughter took her dad and they when walking on the trail ( she pushed he rode lol).

Alma xxx

[abirke in reply to AlmaJ67]

Oh how nice. We have wonderful trails here but we have yet to venture out. He will soon be getting a wheelchair that is more than just a transport chair. I am hoping the bearings will give more ease in pushing.

Anyway it's nice to hear you had such a lovely day.

Thanks for writing.

AVB

[imli]

That sounds so much like my Dad's routine in the last few months of his life. If that works for you, then that works for you. Do whatever works for you and makes your loved one comfortable. tRy taking s nap when he does- it's like taking care of a very willful baby - it's the darn PSP

[abirke in reply to imli]

So True...Oh, I call him 'dad' around the house, he's actually my husband.....Funny story, We had the emt's and police here when he went through the window awhile back.....I kept calling him dad , and medics could not figure out what our relationship was,,,,In fact later on that evening my daughter was pulled over by the same cop (must be a small one-cop town we live in) that helped my husband. When he recognized the name, he told her of the incident and asked if that was her grandpa? "No my dad..So what's the matter with him?"....She never called when she found out....isn't that sad...sorry, totally difft story......

AVB

[AlmaJ67 in reply to imli]

Imli

So sorry about your dad. This disease takes so many loved ones. And we don't have any answers as to why. That is the hardest part for me is not knowing what is causing it.

Alma xxx

[KJN99]

Routine has been the key to a restful night's sleep. Change, alter or rush the bedtime routine usually results in agitation and requests later to get up or worse my husband trying to get himself up from the bed and ending up on the floor.

[tenny36]

my husband Bob has had PSP for 6 years and at present cant speak/walk/see/can just about stand to transfer to chair with my help and an aching back and shoulder. He is quiet in the day often sleeping alot in front of TV - he has had a PEG fitted last July but no longer needs to be fed through it just his meds - manages food inpuree form and I have to feed him - the trouble starts at night - he starts to shout /chokes and take pjs off and his duvet - very cold in morning - - he use to be able to ring a buzzer for me to come if need wee -now he cant see no longer to ring for help so I go down every few hours usually to a wet bed - its difficult to get him out into chair to change sheets. I am so tired as altogether get about 3 hours sleep a night. Contacted CHC promise call back -didnt happen - the office who deals with Bob is over 40 miles away and I have never met worker- any care arranged over phone - she has never met Bob or me. I do get help in the mornings to get him up and day care twice but no time to sleep myself as so much washing etc to catch up on when hes away. He gets locked in with this illness and so sad to watch quality of life ebb away. I worry a lot about what will happen near his life end - what form does it take ?? I want to be prepared good or bad - what am I looking for how can I help - he has a do not rescusitate form and would hate to live this kind of life with all his dignity gone - carers and me attending all his personal needs to an awful awful illness - sorry just feeling exhausted ,lonely and very sad today .....

[AlmaJ67 in reply to tenny36]

Tenny36

I'm with you on the being prepared. But from what I have read on both sites I'm on, something's are the same for everyone and somethings are completely different. One of the main things I have noticed with most is there is going to be a lot of sleeping and a lot less eating. More choking/ coughing. Other than these things, it seems each has different symptoms.

I went through the no getting any sleep. And it has just been since I was able to get the routine going that I am now able to get about 4 1/2 a day. But I started helping him with everything. He does nothing without someone there. I even have a strap to connect him to the chair he loves to sit in. It won't keep him from getting up, but it takes him a bit to undo it. I also have a baby monitor with two cameras, so no matter where I am I can see him. It is really helpful at night, less trips to go check on him. It has sound so I can hear him. Something like this might help you.

[tenny36]

Ihave cameras but when I see him and get there hes on thefloor - he stiffens his back and arms and push backwards so its so difficult to get him up- recently had our Swift lift team / our son /ambulance out all within 4 hours . His sight is bad and no speech.

CHC are involved asked for night sitter maybe 1 or 2 nights promised would get sorted or respite for 2 weeks which sounded wonderful - when I ask when they said last Tues - then called back to say even though there was a bed paperwork wasnt done so may be another week - how cruel to promise this lifeline then take option away.........

[Heady in reply to tenny36]

Know that feeling. I was given CHC some five weeks ago, still no extra help! Got a phone call yesterday, they hope (!!!!!!!!) to put the agreed care plan into action in two weeks time!!! When I phoned to see what was happening, all they offered was to put him into care. The way I feel tonight, I wish I had said YES!!!!

Lots of love

Heady

[AlmaJ67]

I also have used a motion sensor and a nurse alert. These two items are priceless as for helping me. The nurse alert is just like in a hospital. Also I bought a rail for his bed it slips between the mattress so it kept him in until I could get to him. I bought them off amazon. I am still using the nurse alert. But I could send you the motion/ pager I no longer use. They also have an alarm that you put under the sheet and it goes off.

Secure Wireless Remote Nurse Alert System - Patient Call Button & Caregiver Personal Pager - 500+ Ft Operating Range - One Year Warranty - FCC Compliant

And this

SMART CAREGIVER TL-5102MP Motion Sensor And Pager

Hope this helps. Let me know if you would like me to send the sensor/pager. Alma xxx

[AlmaJ67 in reply to AlmaJ67]

For

Tenny36

Or anyone else it might help.

Alma

[tenny36 in reply to AlmaJ67]

Bob thrashes about at night as if he is in a dream - sometimes just lots of movement and then calm - the movement sensors would be going off all the time. There was a time Bob could press alert but as no longer got voice or sight this is redundant. I have to keep check on web cam in night to see what hes up to - I have requested CHC put in night sitter to allow me to get some sleep - considered it now stalling saying care plan not up to date.