So .. MAN! Things are changing by the day it seems.
In the last two weeks, Mom has fell twice in the bathroom -- I am frantically trying to make the proper and safe adjustments. She is having significant difficulty with balancing herself with a walker in the bathroom, pulling her pants down, and actually sitting down on the toilet. We have this" toilet stand grab bar", however it is not secure enough anymore; so that has to go. I have installed grab bars at every touch point, but that doesn't seem to be helping much anymore -- I feel like I have to be there. So, today she fell hard down on the toilet seat, and I have to get something to elevate. I went and bought one quickly at the local Medical Supply Drug store, but it is not sturdy enough - taking that back. I am on Amazon tonight reading reviews ... thats overwhelming. I am wondering if any of you have any insight or advice on this?
Currently, I have a camera on the main part of her bedroom, and one in the bathroom -- for my eyes only; this has brought me great peace of mind, and I can keep an eye on her. I am now sleeping in her bedroom, because I don't want her getting up without my help and risking another fall.
Truly amazed on how things are changing so fast with her mobility .. I will do whatever it takes to keep her quality of life up as high as I can - -
Any ideas?
Written by
bazooka111
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Oh! How is your lovely mum coping? You seem to be sooo caring and thoughtful!! Love you for that!
Commode chair to get her to toilet? Yes, a higher seat may help.
We also got rails put either side of toilet but they need careful negotiation to get between, and your mum may find it another obstacle on her own!
Sounds like you need to try find an additional helper/carer to give you a hand. Ask her doctor what is available. With this sudden escalation, you may need more than 1 pair of hands sooner rather than later!
So pleased you got out for a meal date after you came back!
Deep breath and keep on keeping on! Sounds like this is the new normal.
I am going to look at a commode chair - Sometimes I think the worse part of this disease, is that she is fully aware of what’s going on. Mom never complains- never. Bless her heart - always easy going.
I am going to need help — I find myself frustrated with my brothers and their families; never offer help. Well.. they will lay it out there, but never follow thru. Their visits are convenient to their busy lives; which have not changed a bit, they just go on with their normal lives. Sometimes I don’t know if they want to face what is happening. Ok I need to stop — that sort thinking will ruin my day. 😳
I will forever be grateful to have the memories, moments, and private special experiences with my sweet Momma.
I’m now 65 and one of the best things I did in my life was care for my loving mother who passed when I was 33. You are truly giving your sweet mom a real gift. This will give you immense comfort in the future.
About families ~ They seem to disappear right?! My hub has PSP he’s in the “moderate” phase we invited his family on a short cruise
and bossy dtr in law said “ not in the cards for us this year maybe next year”! Um really with PSP??!!
Betty...as I read your response to Kim I found myself 'nodding'...exactly my sister who has CBD moved closer to where I live (for support) and her daughter is so upset with her for moving further away from 'her' that she has only done the 3 hr drive 'ONCE' since last August!!! I have explained in detail about the disease so they know the outcome...but choose not to visit...What is that??? denial or ignorance...I can't fathom this way of thinking!!! and they are "FAMILY'!!!!
Sadly there will be a point fast approaching when independence becomes too dangerous. Like every stage this takes adjustment. With my husband I (or a carer) needed to assist onto and off the toilet . The coordination required to position and adjust clothes is too great even with grab rails and height adjusted seats it becomes impossible. Falls in a bathroom so painful with no cushioning from carpet etc.
A bed sensor was a great addition in our house -I could get to my hubby before he fell.
Progression is so very painful to see, each deterioration leading to the new normal which takes an adjustment and constant rethinking. An Occupational Therapist May be a good additional to your team to help with future planning.
Yes the multi- tasking of having rails, but balancing in trying to pull her house coat up or pants down all at the same time is a constant struggle... I have pretty much been there every potty visit and pulling her pants down, and guiding her down in the seat, otherwise she will drop hard. Time for some new changes I’m afraid. I’m praying this doesn’t progress too quickly. 🙏🏻
You can get toilets that are higher than the norm. That might help. The best thing I had was the Steady Sara, Steve could pull himself up from his wheelchair, I would turn him around, then he would lower himself down. That changed our lives! Like others have said, independence and dignity are luxuries that are denied to PSP sufferers. Safety is paramount.
Sorry, I don't know. They seem to be called various names, depending where you are. Hopefully someone from your side of the pond will tell you. We got ours from the OT.
I think the piece of euipemnt you are talking about is called a 'Sara Stedy' by Arjo Huntley.
Very useful when my husband couldn't stand on his own and needed to be transferred from his wheelchair to a chair and from his wheelchair to his bed. If you look up Sara Stedy you will find it on line.
We tried a few raised seats that clamped to the bowl by various means. We found one that worked fairly well as it used the holes for the seat lid bolts. It added about 4" and dad used it for 3-4 months. Towards the end of that time frame I was assisting in getting on/off the toilet. Eventually we had to just switch to the hospital method and handle everything in bed, even if it meant laying him down for a brief time.
Hi Kim, we had what is called a Comfort Height toilet installed then had a safety seat put on top. It has handles on either side of the seat. And grab bars were also put in, but since Mike can’t turn around safely he is always accompanied.
Hi Kim, I agree with your statement in your post....I FEEL LIKE I HAVE TO BE THERE. I would change the "feel" to NEED to be there. I also agree with honejen43 and Tippyleaf, you need to get help. You mentioned the lack of help from your siblings, how about asking for money to be used towards a caretaker. It could be a win-win. They will feel they are contributing and you will get help.....especially help from 7pm to 8am.
A reminder...most of us on this site were "caring" for males (my son, spouses, father, etc). You are caring for a female and the anatomy presents different hurdles/challenges.
I kept my son as home because that was his STRONG request, but others on this site have used a rehab facility with many hands available. My son did not have LTC (long term care insurance), and in the USA we pay out of pocket without LTC (I might mention that I bought some for me, and am grateful for each month that goes by where I pay, but don't have to use).
I am sorry that you and your mom are going through so soon...MAN PROPOSES BUT GOD DISPOSES.
You have had such great replies from everyone I don't really have anything to add. I remember mum wanting to be independent and not wanting to wake me to use the loo. I see that you mentioned her house coat. I'm presuming this is long in length. Mum had difficulty with her long dressing gown so I got her bed jackets to wear over her nightdress less to pull up at the loo. I also encouraged her to wear a small pad in those early days so that if she couldn't get to the toilet quick enough it wouldn't matter if she had a little accident.
It did eventually get to the point where she had to be accompanied and assisted to sit. I think by what you have said your at that point now.
I know just where you are coming from, I think the bathroom is the most dangerous room in the house, whilst in there we are turning , reversing, taking pants up & down, sitting down and if we get it wrong it's a hard floor or porcelain toilet/wash basin that we are likely to hit.
Mum did have a booster seat on her loo, which I hated, it was difficult to keep clean and came loose. So when she moved we put a wet room into her flat and I asked for a wall hung toilet at the height of a normal toilet plus booster seat. I thought I was very clever and it worked fine for a time, initially she had a moveable frame round the toilet, now she has one screwed to the floor to make it more robust.
Now Mum's mobility is much more limited it is not such a great idea. The height means she struggles to get her feet firmly on the floor when standing up - her left foot has a habit of pinging into the air and I have to stand on her toes (gently) to keep the foot in place. This is a problem whenever she stands but the height of the toilet makes it a bit worse. However the main problem is the toilet is too high for a glide commode to go over it (we would also have to remove the frame), which would have been good to be able to use as it would have cut down on the number of transfers, she hates (understandably) going in a "bucket" and would prefer to struggle to sit on the toilet.
If you are looking for a new toilet there are some very fancy models out there (I think the Japanese lead the field) with wash & dry functions. I've a friend whose son-in-law has MND and he has one that his wife swears by !
Unfortunately you cannot let her go to the bathroom by herself. It is dangerous and she will fall. You’re making all the right choices regarding equipment but someone has to be with her all the time. It’s very difficult. Hang in there.
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