Restless, Sleepless and Impulsive

Charles fell again this week, through the wall in the bathroom. The holes in the house are legendary. Friends donated a lift chair but it smelled so musty that he started having breathing trouble.

Went to the doctor, lost another 5 pounds in three months and the impulsivity yesterday and again this morning is frightening. Almost fell twice at doctor's office. Ugh.

Not eligible for hospice yet, we are in a bridge stage (?).

And last night was a 5 hour tug of war with the restlessness and my lack of sleep.

Just needed to let my "friends" here know. But then you ALL know.

Cuttercat

30 Replies

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  • Sending you a massive hug, we are going through this together, George doesn't fall much he is in a wheelchair, but does try to get out of bed. Feeling for you it is tiring xxxxx

  • Thank you for the hug, I truly need it.

    Cuttercat

  • Fell through the wall! How are you supposed to deal with that, it sounds terrible. I'm sending my love and support, it's just awful what we all have to deal with, both carer and sufferer. When I watch the carers moving Ben around it scares me to death, I'm sure that they don't appreciate what a danger they are to themselves and are too slow in letting the carers know that they mustn't hold onto the wet room sink when being dried down.

    Sending you a big friendly hug

    Love Kate xx

  • Yes, we all know. At this very moment, S is sitting on the edge of his chair, obviously wants to go somewhere, but can't tell me. Hopefully, he will relax, before he decides to do some floor hugging.

    Lots of love

    Heady

  • Hi, Dear Cuttercat:

    So sorry to hear of Charles' tough times. Sending you lots of encouragement, and big hugs. We still need to find time to talk by phone! We have had a death in the family, lots of craziness, and then Hurricane Matthew! Will be praying for your patience (and mine) to be endless!

  • Let's try for next week. We'll make a date and time.

    Cuttercat

  • Hey CC I'm sorry; you are in a rather miserable time. Sounds like it's sort of out of control. Hows that new change in your job? I hope it's not making life more sh^^/ than it already is....What is the lift chair made out of . If it is cloth, you can use an upholstery cleaner on it....if it is leather or vinyl I have always found a good wipe with something like Dawn with a touch of clorox a bucket of water and a sponge works pretty well deodorizer by Baking soda on a towel in the seat of the chair works well.

    Did his Dr express concern at his wt loss? Does he have sleeping pills? B has Ambien and Melatonin. I am sure I have told you of the anatomy of my household walls....B's cranial imprints in almost everyone of them....and a lot less furniture and a lot more toilets....all due to his inability to stay upright. Now that he is mostly in his wheelchair, he has fallen alot less....Perhaps it is time for him to think about a wheeled mode of in-house transport....

    Talk to me about your job

    ((HUGS))

    AVB

  • Wheelchair is coming. Yes, the house is very bare but that makes it manageable and clean! I laugh but it's not funny.

    The chair is gone, even after the 5 types of cleaning, including professional and outside in the sun - it's better but not worth the risk. Charles was having trouble breathing while sitting in it. Not good for our PSP patients.

    I'm so pleased to hear from everyone, all on the same page but ALL kind and sympathetic. Until the next post! Thanks!

    Cuttercat

  • My son has asthma......so I know that it just takes a few bad spores to limit good breathing

  • Know exactly where you are coming from.D used to fall at least 4 times weekly but now we use a wheelchair for transfers all the time.Much safer now.We had the TV through the wall twice last year and every small coffee table has wobbley legs.Upstairs i use a commode on wheels to get D from stairlift to bedroom and the hospital bed with sides up at night has prevented the falls out of bed.Take care and try some deep yoga breathing when in bed xx

  • Hey! I use a commode chair with wheels to get my guy from the stairlift to the bathroom and the bedroom and back, too! It actually steers very well, and the wheel locks are better than the ones on his wheelchair. Funny.

  • We are transfer experts xx

  • Hi Cuttercat, virtual hugs from this side of the pond hope you manage some sleep.

    My post is concerning his weight loss. 5lbs in a couple of months may be the start of next phase but it depends on his weight prePSP, if he is 100lbs it could be worrying while 200lb may be body getting right weight (how I would like to lose some lbs). Monitor the weight loss and when it approaches 10% especially if in short time get the dr in. It may be that he is no longer eating as much or it could though be the start of swallowing problems (these can deteriorate very quickly with PSP (with my wife went from a couple of chokes on chopped up food through puréed food to requiring PEG in 4 months)). It may be the time to discuss with a professional with you both about the issues of indirect feeding before you hit the crisis. Sorry to be a damp rag but M lost over 20% weight in 2 months but had been losing small weight amounts for about 6 months previously say about 5%.

    Anyway let's stop the lecture and wish you both my best wishes for a better day and night. Tim

  • He said no feeding tube. So I wait and see what happens. Ice cream is it.

    Has anyone used Boost or Ensure without protein? Is there such a thing. Protein not good for PSP.

    Cuttercat

  • Hi Cuttercat M has Ensure fibre, the protein is not high but is present. The extra fibre over standard Ensure helps with bowels.

    Totally understand the indirect feeding issue. I totally agree it is up to the sufferer to decide. By the sound of it M was much further along the PSP road when we were offered it. It provided over a year of stable nutrition and a reasonable quality of life during which we were able to do coach trips and family visits before her transfer mobility and continence went earlier this year. Since then she has moved into a nursing home and I believe her quality of life has deteriorated but she still is here and we have had an extra year of memories which we would not have had.

    Best wishes Tim

  • no peg 4, m,e tho i dont want to be artificially fed when i.can no longer enjoy ,my fppd

    kilo jil;

    xxxx

  • I'm proud of you. Taking charge but knowing how it will be. You are to be applauded.

    Cuttercat

  • Hi, Jill! I see you checking in quite often; I'm always glad to see your lovely smiling face. Can you say how you're doing? We are enjoying such a gorgeous fall here, lots of sun and mild weather. I wonder what it's like for you. Do you still play Candy Crush? Are you getting out and about? Thinking of you more often than you'd know, and would love to get some news. Love, ec

  • difficult to,type,smithi,g now jililxcxxx

  • I understand, very glad you are here. You always seem like a friendly spirit, kind of linked arm-in-arm with us, and it always makes me a little happier to see you. Lots of love, ec

  • I remember these exact experiences with my wife. I was so exhausted. As much as I would try to settle her down and stay in bed, she'd climb over the hospital bed with the rails up, while being connected to a PEG feeding tube IV machine and having a Foley catheter coming out of her and connected to a large collection bag. 3am I would hear a BAM!

    But as her disease progressed, she got weaker and less compulsive. She's been gone for a little over 3 months. I still miss her madly, but I don't miss those 3AM scares.

    Ketchupman

  • What a rotter PSP is. Completely relate to the challenge of falls and impulsiity. my hubby fell last week breaking the toilet cistern flooded everywhere took 2 hours mopping up during that time he called every few mins to ask what I was up too!!!!!

    arghhh what we all go through. I am fortunate that my hubby goes to hospice day care 2 days per week whilst I am at work. Sometimes dream of taking the whole day off and sleeping. Night sedation ??? We use Clonazepam if he sleeps so do I hence the 'we"

    Take care sending a big hug

    xxxx

  • We lost three toilets - I feel your pain! At least there was less flooding damage after the first time - because everything in the room below had already been removed. I felt very sorry for myself, until abirke said her husband had destroyed 4. Isn't it just the pits? I have been known to leave work early to nap in my car for an hour. It helps. So what do you do for work? Love and peace and good plumbing, ec

  • Hey Tippyleaf,

    I take Charles two days as well while I work. It helps.

    Funny, I too think I may drop him off and go home and sleep for the rest of the day. Just might do it!

    Thanks, I'll look into sedation but then risk bed wetting even with the depends, right?

    Cuttercat

  • We seem to be OK at night all wee accidents are in the daytime but my hubby gets up to go to the toilet every 2 max 3 hours, of course he falls at night just as daytime but I manage to grab sleep in between prior to the Clonazepam no sleeps!!

    Xxxx

  • Oh gosh yes, I know! My deepest sympathy. It's awful, isn't it?! - the holes in the walls. It's been several months now since he's put a hole in a wall, or smashed any furniture or wrecked a walker or destroyed a toilet and flooded the house - for a while I had the plumber in CONSTANTLY! For more than 2 years it was a constant barrage of destruction. My attic and basement are filled with the remnants of things I hope someday to be able to repair. (Let's not even mention his broken ribs and poor scarred head!) I was a wreck myself!

    Anyway, it has slowly become better. I hope that it becomes so for you, too. He is in a wheelchair most of the time and is never left alone. He still gets up and resists being kept in the chair, but I sometimes can channel his energies to a safer place. Oddly, his weight loss, which was quite frightening for a while, 20 pounds in less than 3 months, seems to have stopped. I don't think he's eating more; I don't understand it at all.

    And the restlessness - Is it the weather, the phase of the moon? He also was MANIC and obsessed yesterday, just couldn't be deflected from his obsession, wouldn't sit, just over and over demanded the phone. He needed to talk to his friend. He can't dial, or really talk, even, but when I asked him what he needed to say so I could help him get through, he couldn't or wouldn't try to explain. So I said asked him if it was "secret boy talk" and he repeated that: secret boy talk. That made me laugh, anyway. I couldn't leave him with the aide, so had to call off work. We called his friend three times and left a message, but he wouldn't accept it. In the end, I unplugged the phone and let him imagine he was dialing the number, I guess, until he got too frustrated with the lack of dial tone! Eventually he dozed off, and THAT part was over, but then he wanted to run, and that went on until late in the evening. This morning he is a rag doll, which is oddly, and sadly, a relief. So I got to go to the office. Lucky me.

    And on with the day. Love and peace, Ec

  • Relate to the disconnected phone thought Margaret would twig and demand connection but seemed happy with it pressed to her ear saying nothing.

    I also remember the manic days followed by flop day. Seems daft but I miss those wild days catching the fall before damage or picking up the pieces.

    Glad his weight is stable it means he is getting the nutrition his body requires at present.

    Glad you managed to get out to the office, even if only because he is tired, it gives you social contact and a life outside of PSP.

    Best wishes to both of you, Tim

  • Yes, Tim, that does seem the very essence of daft! (Sorry.) I am now recovering a bit from those years on high alert, and still only just realizing how wonderful it is not to be quite so skittish and anxious all the time. As Heady recently wrote, it's similar to PTSD. We are far from out of the woods, and his wild times make ME wild, too, but the constant crashing phase is past. Mind you, he fell out of bed two weeks ago and ended up with a shocking lump and shiner. Made him quite docile for a couple of days though, and I have threatened to give him a therapeutic bop a couple of times since!

  • Thank you for this! It helps. Funny how the weather or moon can do this but we don't know really. I do have some laughs and try my best to stay calm but PSP doesn't let us. I'm hyper anyway so it's hard.

    You are a dear to me and everyone. Appreciate everything you said.

    Take care. I'm at work now.

    Cuttercat

  • Oh a therapeutic bop on the head!! Would this stand up in a court of law I could so easily at times give a very therapeutic bop!!!!!

    So I am now braced with plumber on speed dial for the next 2-3 toilets made me chuckle I was clearly over reacting to número uni!!!

    Xxxx

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