Things have seemed to change overnight ... Moms legs are just freezing up, and moving from one room to another has become difficult. I am trembling, and trying to process ...
My mom slipped into the floor of the bathroom this morning, and I wasn’t gone long!! I returned to her laying on the floor — this image will forever be in my memory.
When you think you’ve done everything to prevent moments like these ...
PSP is cruel like this. You get used to the way things are and wham! it all changes. This is the time to think about yourself and putting things in place so you don’t have to struggle to move her or get her up after falling. My husband used a walker in the house with me walking behind him, at first holding onto his belt and then a special belt provided for the purpose. He then went to a wheelchair with me transferring him when he could help and then using various different kinds of hoists as things progressed. I had an Elk, there is also a camel, which I used regularly to get him off the floor, again while he could help but it eventually meant regular paramedic call outs to lift. Think about what you will need now so it’s all in place when you need it. It’s not all doom and gloom though. With correct equipment and help there can still be many good days ahead, many good memories made. There will be highs, plateaus when you have everything sorted and an then an almighty drop, again and again. Now it’s all over for my darling husband I remember many more of the good times, even during PSP, than the bad ones.
You are obviously a very loving daughter making your mom’s life as good as possible but do all you can to make yours as good as possible as well. She needs you healthy physically and mentally.
Sending you a big virtual hug.
Best wishes.
❤️ XxxX
Sounds like a small zoo, with elks and camels! Later on, we had a Viking hoist in hospital!
Hadn't heard of those aids when I needed to get hubby out of the bath.
I got a large spa towel and put it under his armpits. Had already managed to get him to turn on his knees. That helped to lift as he helped himself up. His problem seemed to be he had forgotten the process! And was the first sign to me there was something going on in his brain that was not normal.
Hugs
Jen xxx
I’ve had to get her on her knees as well - fortunately my daughter was nearby and she helped get her back up —- but, wow it was dead weight —- she just didn’t know what to do and yes, forgot the process. I hate that this disease is doing this to my sweet Momma
Thank you for sharing this with me - I have to get some things in order... I’m baffled at how quickly things have changed in her movement, and yet she is so sharp in her memory, recall ... conversations are difficult because of speech, but I still do my best to keep her talking. Oh NannaB ... what a horrible journey to have to witness - I love her so much and wish so very bad that I could take this away!
Oh, that doesn't sound great! Does your lovely mum have a walker? If not, now might be the time to try one. You can also find a body belt which is put around the waist and helps you lift your mum and support your back! Can also hang on to it and her as you walk behind her and the Walker.
Look too at the next step in caring, so that you are ready for handling a less mobile mum. Sadly, it will happen, and I know I found it helpful to understand the "How to" before it happened. You can then ask sensible questions about caring, getting help, and how the home environment suits, or falls short.
When my husband began to have difficulty walking and his feet seemed to stick to the floor, we tried music and dancing.
Rhythm and music may loosen the mind to forget what it is trying to do and enjoy moving to music instead. We also found calling out "One and two and one and two" helped, a bit like marching slowly. Keep nearby in case of 'wobbles'.
You made an earlier post about consulting a movement disorder specialist. I think that may be helpful, though perhaps not quickly available. It does sound like your mum could do with some help at this stage if she does not improve. Your GP may have some ideas, thoughts on additional help with care, or suggestions of medication if s/he understands PSP.
We learned a lot from our Parkinsons nurse who introduced the 'Dance for Parkinsons' idea. And going to Parkinsons meetings where there was a variety of disability amongst a lovely group of cognitive people! My husband surprised me by showing obvious enjoyment at dancing, something he had never been any good at!
It must be frightening for both of you! You have had such a good run of amazingly happy moments! I hope dancing to the toilet brings that beautiful smile to your mum's face again!
Big hug and stay strong!
Jen xxx xxx
So frightening. I have tried to prepare myself - reading so much, but yet I still feel blindsided and it is REALLY happening to us. The body belt — I will look into that right away. I have had her using a three wheel rolater, but it moves ahead, and yet her feet are not going with - so I feel like it’s a fall waiting to happen. So I am switching her to a traditional walker without wheels - is that what you would recommend?
I love the music idea - I am going to look into this. Do you think physical therapy at this stage is helpful? We’ve stopped for awhile, and now Im wondering if I should take her back ...
Thank you so much for your support and insight. 💛❤️
You have read my posts! I know exactly how you feel!
If you try a walker without wheels, get it now! One with a seat might be a godsend sometime!
Our journey was a very sudden and fast decline. Your mum may plateau again. Who can tell!
If mum has difficulty moving in bed, there is a grab rail for the side of the bed, and a trapeze that hangs over the bed and she can grab to sit up. Both were helpful to hubby.
Watch for sudden loss of back muscle control that means mum can't sit up. That is the point where I declared an emergency and got hubby into hospital. It seemed the solution at the time since I could not manage him alone and getting help was a week away! It takes so long to arrange. Besides our shower was not a walk in type. I got soaked when I showered him!
Keep fighting to give her the best you can! You have done so wonderfully well until now. So many beautiful memories!
I know! It is agonising to watch and know you can do little to help. But you will be by her side and she will know how much you care!
Big hug
Jen xxx
I’ve learned I can’t turn my back on Larry for a moment. Hand grips in the bathroom would be good if she would use them. People with PSP either forget they can’t do what they use to or are determined to do it themselves which they can’t.
We just added grips, hoping and praying this will help in navigating the bathroom. I just can’t believe this is happening.
Unfortunately lots can happen which is why I read this site daily to know the potential things that might happen. I want to be prepared.
I find I use the grips a lot when I am assisting him. I get him to hang on while he gets dressed.
When I had them put in I had one put in my shower. I am so glad it did. I use it daily.
Yours is the best description of PSP dementia I have read.
I am reading all of your responses with tears running down my face; feeling the sense of strange security knowing that there are actually people like you —- that know exactly how I’m feeling.
Mom has been using a three wheel rolater for quite some time, and for about two weeks now - I walk behind, guiding, verbally encouraging each step. Her feet seem to be frozen to the floor - this difficulty has happened over night, and she’s exhausted from point A to point B
Isn’t it funny - I’ve read what seems hundreds of posts here in the forum, and have watched webinars, videos, etc. and now I am living it ... reality has sucker punched me this week. I have so many things I wanted to do this summer with her ... I suppose it will
require me to adjust and keep moving forward. As in the movie Finding Nemo ... “just keep swimming, just keep swimming ...”
Thank you for allowing me to spill my feelings out on here, and sharing your insight and incredible knowledge I read every post and will implement every single suggestion that fits my situation.
I wish I lived close to all of you - a glass of the best wine I would share, along with some beautiful
conversation and a delicious meal. Thank you - I consider you all friends that God has provided.
Blessed ❤️💛
I'm in Detroit. If we take a ride south, I'll send you a note😊
My Steve always seemed to plummet after a fall. It was the sign of the next down turn. Also it could be the start of a UTI. One thing is for certain, PSP never lets you relax, as soon as one thing is in place, it's already out of date and the next piece of equipment is needed.
As NannaB as already said, it's time to make sure you are getting help and that you get plenty of rest. Caring for a loved one takes its toll, for your Mum's sake, you can't let her down, by being over tired and stressed.
Sending big hug and much love
Lots of love
Anne
Think you Anne - it is exhausting —- I’m feeling overwhelmed at the moment, processing what is happening. One day at a time.
Dear Kim
This is such a distressing part for our loved ones the freezing often happens in doorways and where flooring changes from carpet to hard floor the physio told me to get mum to March up and down on the spot 😳☺till freezing goes which was ridiculous as mum was dragging her right leg and couldn't lift it to march on a spot. She did however tell me to get mum to focus on a point she was walking towards at eye level this worked. We also counted 123, 123, mum made this into a rhyme which we used. The carers went along with this too and it worked for a long time.
It eventually becomes the new normal as we all seem to refer to it but gosh how quick the time goes and like you say things happen overnight. It's horrible.☹☹
Keep making plans do as much as you can with her this summer.
Big hugs to you both
Lynda 💜
Lynda you are so right! We have come to the lake house to have a picnic today, celebrating Memorial
Day ... I am literally laying across from Mom as she sleeps. I made her promise me last ought to wake me, so I can walk with her to the bathroom. We actually had to practice her using volume to say my name - bless her heart, she did it! She used a lot of energy to repeat “Kim” until she woke me up this morning. And it’s the doorways that are the problem!!!! You are right!! Her right leg just refuses to move and it just zaps all
Of her energy. 💛❤️💜
Brings back memories of the disbelief at each stage even though I knew !
Many good suggestions have been made. I used to sing and chant to get Chris moving again. It was important to reduce the anxiety for him at not knowing what to do. He was worrying with his wheeled walker with a seat. I had to steady him all the time.
Sorry for it all and a cheering glass !!
Love Jean xx
I am so sorry Kim, the symptoms are appearing and causing havoc. I encourage you to keep a journal of short daily notes. It will help when consulting with specialists.
You have gotten sound advice from others responding to this, your, post.
My son never fell. Because as Jeff166 shared "can't turn your back for a moment". YOU/someone HAVE/has TO BE RIGHT THERE WITH YOUR MOM WHEN SHE NEEDS/WANTS TO MOVE. Because my son was male there were advantages. At night I had three plastic urine holder (forget what you call them - "urinals"?) on the night table next to his bed. He urinated in them, so he didn't have to walk to his" bathroom.
THE BEHAVIOR OF PSPs IS IMPULSIVE. When you mom agrees to your request(s) be prepared to have lots of patience when her behavior is not what she agreed to.
Jeff had those crummy (or so I thought until I saw how safe they were) metal walkers and had tennis balls (we decorated them) put on the feet. He was required to get up and walk five minutes at a time, three times a day (or more if I could convince him). HE NEVER MOVED ANYPLACE WITHOUT SOMEONE RIGHT THERE WITH HIM.
He had a doorbell device that hung like a necklace around his neck. He used this whenever he needed anything/help.....during the day he often forgot why he was summoning help.
Exercise is IMPORTANT. I bought Jeff a stationary bike with a seat with a back. I took him each day of the week to different exercise groups.......Y group for PD (good to be with others who are also limited) twice a week. A music group once a week. If he refused to get up for his bike, I had him move his legs up and down (while sitting on his chair) with me as the example. I had a medium size ball and at the start of each day (after breakfast) I would throw the ball to him and and he back. I started Palliative care (thro his health insurance) for him. They would send a PT to the house.
Except for the bike all were purchased thro Amazon.com.
Yesterday by accident I came across emails I had written, while Jeff was alive, to family with details of Jeff's condition. The one thing that I re-learned is the UNPREDICTABILITY of PSP. Because one day was hell did not mean the next day would be. Because one day he had a temperature of 103, gave one motrin, did not mean the next day he would have a temperature. Because one day he could not use speech did not mean the next day would be the same.
Hang in there, pray, and if you CAN get someone to come in and help. Even if you don't need them, it is nice for your mom to get use to, adjusted, to a new personality...because eventually if your mom remains with you, YOU WILL NEED HELP.
FEAR is the biggest enemy, I believe, of the caretaker. When FEAR rears its head, pray/think positively, but do start making changes that your mom's changes requires, and do listen to what SHE wants. SO TRY TO PUT OTHER THOUGHTS TO REPLACE THE FEAR.
Los Angeles, CA, USA
I can’t add anything that hasn’t already been said. I learn from reading all of the replies and the support is just amazing. I have a shower chair inside the shower but I have yet to install grab bars. I don’t know what I’m waiting for? I have a sit down portable toilet that I can put next to the bed, but fortunately we haven’t needed to use it yet. It’s hard to be prepared even though you know it’s coming. I got a kick out of Joysalud’s post about ringing the bell and forgetting why they were summoned. Funny, not funny. But oh how I can relate.
Hopefully tomorrow will be better!
Raising my glass!
Love, I SewBears
Such good responses from the lovely people on this site. Love and hugs to you and your mum xx
Hi bazooka111,
Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked):
"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
Hugs, luck and courage.
Luis
My heart goes out to you.
I remember with each change my brother became more distant. I think he felt a burden and annoyed at another loss of his independence.
It's such a long tough journey but made slightly easier by the wonderful people on here who completely understand. They all helped me more than they know.
Just sit and talk to mum occasionally, I'm not sure I did enough of that with John, as I was so busy preparing for the next change.
Big hugs
Sue x
John tried a walker with wheels for which he was a nightmare and then an ordinary walker but his balance was too poor. Everyone is different. The new stages creep upon you so quickly. When he was at home and had many falls used to try and shuffle him to apiece if furniture to help get him up. I found the belt was not strong enough to hold him. Have you put say another mattress at the side of your mothers bed so if she’ll falls out she has a soft landing xx
Hi Kim, these downturns shock the daylights out of us even when we think we are prepared. You have been amazing with your mum, such a story you tell in your wonderful pictorials and you have undoubtedly given her so much joy, trying so hard to defy what this despicable disease has the ability to do to our loved ones, and sadly of course always wins. Now you have to adapt once again as you negotiate another phase and it sounds like now is the time to get a new regime in place pretty quickly. The main thing is, and as NannaB has said, the challenges ahead need not be all doom and gloom. Let's not pretend it's going to be easy (many on here, including me will have been to hell and back) but your mum will still know that you are there for her, protecting her, fighting her corner and just loving her, helping to lessen her fear and feelings of helplessness. So please get some help now so that you have the energy to devote time to her with your planned outings etc (for as long as that is possible) and try not to end up drained yourself, so that you can always be there for her with that beautiful, ready smile. I hope, too, that you are blessed with a really supportive family because a good family, as I well know, are a lifesaver. Sending you heartfelt good wishes. Hils. x
I can’t really added anything to what has already been said but my heart goes out to you. PSP is vile but you are amazing and you have shared some lovely photos and you are doing a fabulous job just please look after yourself and know that we are all with you.
Love Sarahxxx
Thank you so much Sarah ... overwhelmed, but I will be on the front line for my sweet Momma ... this forum is a God send.
You dear woman...you are your mother's guardian angel and have a gift for caring! As someone said already, sometimes our loved ones just don't remember how to get up -- the sequence of tasks and movements required to do so. My husband fell in the shower last week and I remember being surprised that he seemed to have no idea how to initiate the steps of getting up. It was frightening, seeing him on the floor of the tub, with the water pouring down on him and looking so confused; I didn't sleep much that night, with the image of him still very much in my mind's eye, so helpless, hoping I would have a solution.
Marilyn
Yes Marilyn - the image will not go away, and now I’m looking at the bruising - it is truly unsettling.
I was just online, searching for the fork you spoke of last week - it looked like a fork but seemed adapted for scooping up food. Do you know the name of the brand/maker? Thanks-
Marilyn
I just looked it up on my Amazon: Homecraft Queens
You've gotten so many great responses here that I'll just add that I'll be thinking of you as you enter this phase of PSP. You've shared so much of your journey with your momma. I've loved reading of your adventures. Just remember to take care of yourself too.
Hugs,
Pat
It’s horrible. It’s like everything happens overnight. One minute they can do things and then they can’t. My husband has a riser/recliner chair but I have to get him up, he has a through floor lift but I have to walk him to it, get him in it, operate it and then run upstairs to greet him the other end. He can’t put toothpaste on a toothbrush. He likes a puff on a cigar (I know he shouldn’t) but he can’t light it.
Keep smiling even when all you may want to do is cry
Xxxx
I call it The Setup. Just when you’re used to the new normal, Bam! The next thing you know, it’s like... “what the BLEEP!”.
I also remind myself that it’s okay to cry.
I can surely relate to how you feel. Approaching one year ago, I left my husband for about 20 minutes to make a quick trip to the store. He was settled in his chair and shouldn't have needed to get up up for anything, but he did. I returned to find him lying awkwardly on the bathroom floor with a large knot on his forehead and blood on his nose from a cut made by his glasses. I was horrified and so angry at myself for leaving. Although, he was not seriously injured, the situation could have gone much differently. It was at that moment that I came to the realization that I could no longer leave him alone. That was difficult for both of us to accept, but I had to start thinking about how to manage this new plateau.
He has continued to decline since that time, and I am needing more and more hours of help to care for him.
My thoughts and prayers are with you and all of us in this difficult journey.
Teresa
USA
I think I was most struck by your comment "I just can't believe this is happening".
My husband had CBD as well, and despite all my research, all the info and strong doses of reality on this site, I was shocked with each abrupt "downturn". A part of one is always seemingly engaged in magical thinking: "maybe if I just do normal stuff and act like normal, this awful nightmare will go away"
Hugs ❤️💙💜
Anne G
Truly ... I have read everything there is to read ... watched endless webinars —- pages of notes ... and still I am shaking my head that this is actually happening!!! I have no words ... it’s a roller coaster with a double loop upside down twist!!
Good days and bad days. Today is a bad day.
I think my Mom has PSP
A photo of a good day
The cost of a day out!
