My lovely mother who was diagnosed 3 years ago with CBD had a very nasty fall just before Christmas. This resulted in emergency care and referral to facial injuries specialist unit where she had deep stitches to her face. I have been in contact with the neuro-rehab team and a physio who has suggested walking aids. My mother is very brave and adamant that she will not use a walking aid and my father is also determined that she doesn't need a walking aid.
I am really worried that she will fall again but I also don't won't to upset them with my deep concerns about the risks of her falling again. She cannot put her arms out to protect her fall.
How do I broach this again with out causing upset? I want to safe guard my Mother who I love very much...
I would really appreciate any advice you might have to help us?...thank you
It is a difficult area but I think it's safe to say that it's not 'if' your mum falls again but 'when'. Unfortunately you can't make her decision for her. She wants to live her life not as an invalid but as independently as possible. She probably knows that that will change but for the moment it will do.
It is a dreadful worry for you I know and you would like her to be kept as safe as possible but you have to let her make those decisions while she still can. Let things take their course - you can arm yourself with all the information etc for when your parents want it. Sometimes people don't want to be reminded of what is to possibly happen to them and want to live in the moment.
I may be wrong and other people on here may have better ideas of what to do. I suspect that simply voicing your fears has helped a little?
Hi, I can see this from both sides. My mother has just been put in a home due to Alzheimers, a safe guarding issue and my husband has PSP.
At first I too reisted any mechanical help for S, thinking along the lines, "use it or lose it". Now, everything is creeping in. I have just bought a walker, that will convert to a wheel chair. It's brilliant, he will walk part way, then I will push! I'm finding that he will actually walk further now, no worries about getting over tired and not being able to get back!
Right at the very begining, S had a day when he couldn't walk at all. I panicked and rushed out and bought a second hand wheelchair and a Zimmer frame. Neither have been used that much, but because they were really cheap, it doesn't matter. The piece of mind they bring, is worth their weight in gold! Why don't you do the same? Tell your father, just to keep them somewhere safe, just in case!
Your Mother WILL fall again! Sometimes I think, not being able to put the arms out to save themselves, actually stops quite a few injuries. Like young children and drunks!
This will be VERY hard, but I think you must let your father decide what's best, I know every sugestion given to me about any aids has fallen on EXTREMELY deaf ears! Just make sure you have done the research and know where to go, to get any help that is needed. That's the best help and support you can give! And of course, just being there for them both.
Dear Martina, I have to second Heady and Joeglad. It's the hardest thing of all, for me anyway, trying to weigh my sweetheart's safety against his need to have some control in order for his life to have value to him. I was becoming a nervous wreck watching for falls, and we neither of us happy with that! I have come to accept, at least a bit, that he will fall, and be hurt, and I will have to pick up the pieces as best I can. The alternative is to keep him immobilized, and I don't think that's even possible. He will get up and go! And I don't want him to quit. This is a long fight, and at some point your mother really won't be able to keep on her feet. Stepping back and maintaining a watching brief is not easy, but it may just be all you can do right now.
Hi, me again, I have been thinking about what you have said. S has been married before, therefore, I feel very responsible for how he lives and survives his life. His children don't have anything to do with his day to day life, their choice. In fairness, one lives abroad, the other, a couple of miles away! I have had frequent advice, how and what to do, wheelchairs, pads etc. etc. etc. I have put every single thought in the bin, what the hell do they know!!! What I DO NEED from them, is, the knowledge, that they support me, what EVER I decide to do. I am NOT putting you in their catagory, but what Easterncedar says right, you have to learn to step back. This is NOT going to be easy, but your Dad especially, needs to know that you are with him, every step of the way!!! Which ever way he chooses!
Sending you lots of love and hugs at this difficult time for you.
I admire you all for being so controlled and calm.
When I see Tillie fall it cuts right through me and I sream ,jell and swear.
the last time I saw her fall,I tried to catch her. we ended both on the floor, i carrying on as usual and then all I could do was hug her hard. She grinned and said sometime I think that you feel itmore than I do.
Hi, you have picked up on a very old thread, but extremely relevant to you.
My husband's journey ended sometime ago now. The falling issue, I remember well, also the shouting and screaming that went on, when he did. I think your Tillie is right, us carers do feel their pain a lot more than they do. Every fall feels as if we have failed, yet again, so that causes our frustration, hence the shouting. I am afraid it is a symptom of PSP that the carer suffers with, nothing you can do to stop that, except, accept that she will fall and you WILL shout, again and again.
Enjoy the hugs whilst you can still have them and treasure the smiles.
My wife had PSP and we made a conscious decision at one point that he attempting to walk with a walker to get from her chair to the bedroom or bathroom just wasn't worth the risk of a bad fall. What is the point of attempting to walk knowing you MIGHT fall and get bad injury? We used a transport chair to move her about the home. Jimbo
I HAV EMAD E THE DECSION MYSELF OT USE A WHEELCHAIR INSIDE THE HOUSE (TO PREVENT MY FALLIGN SO MUCH INSIDE THE APARTMENT) and it HAS WORKED UP TO A POINT APART FROM WHEN I MA STRESSED HTEN I TEND TO FALL M ORE AND GETTING UP INT HE MORNIGNS TO USE THE TOILE T MEANS I AM AN EARLY RISER NOW TOO!
(NOT GOOD FOR ME TO HAVE TO GET MY PARTNER OUT OF BED - HE CAN SLEEP FOR ENGLAND IF HE WANTS TO!)- AND MY FALLS TEND TO START THEN WHEN HE SI AROUND AND WHEN I AM NOT ON MY OWN - I TRY TO SLOW DOWN AND COUNT 1 - 2 BUT IT DOES NOT ALWAYS WORK AND THEN I SPEED UP AND OVER I GO WHEN TRYING TO WALK OT HTE BATHROOM HWIHC IS QUICKE RTHAN MANUALLY TRYIGN OT PROPEL MYSLEF IN MY CHAIR - M CO=ORDINATION HA SGONE IN MHY HANDS AND I HAV ETO USE MY FEET _ MY LEFT LEG FREEZES A LOT SO I OFTEN GIVE UP ON THE CHAIR AND TRY TO WALK IT AS NOW WHEN I AM SITTING HERE TYPIGN AND THE URGE HAS COME UPON ME TO "GO"
OS I WILL FINISH THIS NOW AND GO
LOL JILL
Thank you all so much for your replies...I really helped just to get it out if you know what I mean! Yes I think I will have to wait for my Mother to let us know when the time is right for her to have a walking aid. I will continue to do all I can to support them and I think you are right in that I just need to accept that I can't control things as much as I would like!!
Thank you again...I have really appreciated your reading your replies
My mother was also diagnosed 3 years ago and has CBD, it is so incredibly difficult to weigh up what is best for her safety against what you know she wants to keep for her own confidence and quality of life, there's also that bit where she probably wants to be capable and fight it and not let it get inevitably worse, something my mum was very aware of. Our family continued without aids, at my mums wish, until Christmas until she also had a fall, stitches to the face as with your mum, since then she is now needing assistance with all walking. We were 'lucky' her falls before then didn't result into anything more sinister. Do you have carers? Are you in the UK? We have fantastic support where we have our own choice of carer who we interviewed and chose (mostly funded by the local council) with my mum for most of each day. As my mum doesn't need care other than assistance walking, the carer keeps herself busy with cleaning the house, ironing and cooking which also helps hugely. It also allows my mum to just call on her when needed rather than someone sitting and waiting for something to do and annoying mum by just looking bored and my mum feeling a nuisance.
Your fear of her falling resonates so well with me, sometimes I'd find I couldn't concentrate at work and worry at night/ not sleep and often wake up in a panic as I would be so worried. I have my phone attached to me all the time, just in case I get a call I dred to take but need to respond to. That said, we did lots a couple of things to help us, such as; a phone carrier around her neck so she could try to call if needed. Now she cannot use a phone easily we use a panic button around her neck which she has used and it worked.
I wish you all well, the best way that worked for my mum is telling her it would make me feel more comforted so I would know she was safe so I wouldn't worry as much. Also, now that the carer keeps upkeep of her home, I can spend more time with her having a lovely time rather than cleaning and laundry x
Hi Sarah it sounds like you and I are in a very similar situation? How did you arrange a carer mostly funded by the local council? We are in the UK (in the South East...Sussex) I'm actually wondering if it might be possible to get in contact with each other? You are the first person I have had contact with who has a mother with CBD diagnosed at around the same time.....
I really feel for u, my mother also had a fall last February, resulting in a broken neck, fractured skull and fractured spine (with 20+ staples in the back of her head) I worry for my mum everyday and my dad is adamant not to put her in a wheelchair as he feels she will deteriorate. Unfortunately we have to let them decide what's best, even if we don't agree. My mum did get tried with a walking aid, but they are too light and due to her falling backwards she will just take it with her. The next step is wheelchair. Mum is currently in hospital after having an operation. She stopped breathing and was on life support for a while. She now has a ventilator and are considering a feeding tube. This illness is horrific and I feel for each and every one of us.
We faced the same dilema with my mother in law. Before we received the diagnosis of CBD she was falling regularly most of the time she would not tell us. She did have a bad fall while she was out with family and friends. We received a call from her brother that she had fallen and required stitches. They called an ambulance, when we got there she could not tell us how she fell, she was very embarassed and said she tripped getting into her car. There was a couple that saw her fall, they said she was at the back of her car and just fell without provocation, like a tree, backwards. Looking back that was CBD starting to rear it's ugly head in full force.
She is a very proud woman, so we explained to her that using something to keep her balance and to make getting around a little safer is not a sign of failure. We are a little lucky as most of her family use walking aids becuase of bad knees and hips. We actually have a slew of them at our cottage for night time walking.
Maybe your dad is in denial, maybe he doesn't want to see the real problem. His support will make the difference in getting your mom to use a walking aid
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Progressive supranuclear palsy or psp
Wheelchair?
mum was told august this year she has psp
Mummy has gone
