My husband fell 11 days ago breaking the top of his right leg. He had surgery last Thursday but then Saturday night climbed out of bed over the sides and was found on the floor. Following tests it showed he has some compression on discs in his spine ? done then or on a previous fall. He was put on a different type of bed lower to the floor. All this prevented the physios from trying to mobilise him until Dr was happy. Thursday pm physio got him out of bed and walked him a short distance with a frame. They were happy he could stand and sit with assistance and frame and said he could go home next day rather than moving to a nearby cottage hospital for rehab. (I have since found out no beds are available for approx 3 wks)
Transport was booked for 3pm Friday, but cancelled as my husband felt sick and dizzy. It was decided to keep him another 12 hours. This morning early the hospital phoned me again to say that during the night my husband fell out of bed again when turning over. They said they put the sides down as he was getting his hands tangled in them.
After reassuring me that he has been checked over by the Dr & no further damage done, he is due to be brought home in the next hour.
I am his wife, friend and sole carer. I love my husband very much but I am worried that I will be unable to cope. I only turned my eyes away from him for two minutes to put some items away in the kitchen, when he got out of his chair and fell breaking his leg.
Before the fall he was getting up at night up to a dozen times, for the toilet or to go and sit in the lounge because he was uncomfortable or couldn't sleep.
It has been discussed by the Social Worker that I should get a couple of 4hr breaks per week and I hope this can soon be instigated.
I just feel so helpless and frustrated. I want to put him in a sumo suit to stop him hurting himself.
Suziewong
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suziewong
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Hi before our mother in law went into permanent care she moved herself and fell often social services provided a sitter three days a week at 3hours each time we also paid for day care 10am till 6pm for the other two days so that 5 days a week my father in law got some time to do what he wanted usually he caught up on his sleep.I would think he will need some rehab if your not happy get in touch with patient liaison you can find your local number on internet they have helped us a lot when we felt pushed into a corner I think you will need extra help and I suggest you bombard your social worker also the more calls you make to the emergency social work number the better if he falls call for help to get him back up you should not have to struggle.I will be thinking of you and use this forum to vent your frustration.
Thanks for that Wendy. Will contact the emergency Social Worker if I have any problems. Regards Day Care there is a waiting list for the bus transport, I don't know how long we will have to wait for that.
you say there is waiting list for transport is there a friend who could drive him or could you get him there in a taxi you may also find a local charity may help in our area we have something called dial a ride you have to book 5 days in advance but as it could be a set day a week is that an option.
Hi Suzie, I really feel for you. It was bad enough when S broke his right arm and hurt his shoulder. I agree with Wendy, if you can't cope, KEEP ringing the emergency social worker and any body else. Even if it's the hospital that he has just come from, but make sure it's not just the young nurse who answers the phone. Ask for the Sister in Charge. Phone for the GP to visit! That should make them do something!!!
Most of all, don't lose heart. Use any anger to give you strength to fight all our "wonderful caring medical profession"
i tis v difficult copign alone iwth your husband's probelm --i have a carer comgin in 3-4 hour s aday to help dressme lkeep an eye on me and to put meto bed.
,my part ner thninks i cna do all thes ething smyesle fbut i cnanot and ge t vfrustrated.
she also takes me t oo local events liek tai chi/ parkinsons/ ladies choir/ hairdressers and it giv es him a little free tiem to do hnis own hting
so it si all for teh bette rfo rme and my self esteem
Hi Jillann. I am so pleased for you and your partner that you are getting some help and support. It must be nice for you to get out to local events etc. I am currently waiting to see the Social Worker who can hopefully push for some help sooner rather than later.
Susie,it is said we are never given more than we can take....I,m not sure who wrote that !!! My wife started the journey approx. 10 years ago...unless you are much bigger than your husband it will soon be impossible to care for him by yourself,you will also require the sumo suit and not only will he get injured so will you,you cannot do this alone judging from your report,use your head to make a decision,not only your heart,pray for strength to be able to see your way through this thick fog,,I cannot see how a 4 hour sitter can solve your situation, i will pray for you both,Rollie
Dear Rollie, thank you for your comments and your prayers. Hopefully the District Nurse is going to look into the possibility of some night care relief but it depends on cost. Am waiting to see the Social Worker who said she would call today. I will pray too for you and your wife. Suzie
I am confused - "Despite comic book myth Wonder woman was not on call 24 hours a day, so you as Superwoman can not remain to be!"
Make point of contacting your network everyday and asking for return calls so they get to know your voice really well and get as much help as you can in. Do not be afraid to sound like a broken record - repeat, repeat, repeat what you write to us - you need to get yourself heard!
To handle PSP - requires an army - not one!
And if it gets down to it repeat what we all say to you - do what ever it takes to get as much assistance as possible before you do yourself an injury and then....
Hi Susiewong, I'm not surprised you are scared. It's worrying enough caring for someone with PSP without injuries let alone a broken leg. You definitely need help as others have suggested. My husband fell regularly before I purchased a Motorola baby alarm with two cameras. One is opposite his chair and the other in the bedroom. I've had it for nearly six months now and he hasn't fallen at home since then. I take the monitor with me wherever I go, including the toilet and bathroom, and as soon as I see his electric chair start to rise, I'm with him. The monitor has a speaker on it so I can tell him to stop until I get there. During that time he has fallen several times at the hospice and at care homes he stayed in when I injured my back and for respite. I am fortunate to have a night nurse 5 nights a week as we were granted continuing care ( something else you could try to get) and she sits downstairs with the monitor and runs up when she sees him move.
I do hope you can get more help. The hospice suggested continuing care and have been very helpful. My husband attends the day centre there on a 12 week on, 12 week off basis and they have provided a sitter for a couple of hours a week now he is "off". Crossroads is another brilliant organisation if you are in GB. In Kent we don't have to pay them and I get one morning and one afternoon free each week to recharge my batteries or get on with things that need doing without taking the monitor with me.
Very best wishes to you both as you get used to nursing him at home again and I do hope more help is granted soon.
I would have not thought of a baby monitor. That is an excellent idea. It would sure ease my mind if my husband got to this point. You are in my prayers.
My husband & I got through the 1st night unscathed, albeit without any sleep in spite of all the painkillers. Moved into lounge 4am then on & off commode every 20mins / half hour with no effect. District Nurse called last night to drop some pads off and supervise me giving an injection which he needs daily post op for at least 1 month. She said she would look into weather any assistance could be given sometimes at night to give me a break.
The alarm with camera sounds a good idea. I will have to look into it.
The local church community have been very supportive with prayers etc We will keep praying that his mobility will improve, as at the moment he can just about shuffle from chair to commode with frame and assistance but leans heavily. We could have really used a week or so of rehab in the cottage hospital but c'est la vie. It's a case of getting on with it the best we can.
Will speak to Social Worker again tomorrow regards some relief.
Pleased you got through first night been thinking of you.Let the social worker have it all guns blazing when she comes let her no you were up through the night and tell them you can't do this 24 7 as you will become ill and then it will cost more get as much help as they are willing to offer you.Good luck and if your not happy with the outcome tomorrow contact pals or qcc
Thanks for your reply and support, Wendy. Who are pals or qcc and how could I contact them? We have had another sleepless night with M in much pain and constantly writhing in spite of all the pain relief. He seems to have gone downhill greatly since going into hospital. He is often confused, especially on waking, he is choking on his fluids, even with thickener in them which he hates, and I am now pureeing all his meals, but his appetite is also greatly reduced. Before he went into hospital he would make some attempt at feeding himself but now is just sitting there with his eyes shut. He seems to manage to doze during the day in his chair but is awake all night and keeps wanting to use the commode although it is usually a false alarm.
Hoping Social Worker turns up so I can explain everything to her.
How about a transport chair (different than wheelchair)? I use one to move my wife about the house and it works well and no walking required with one of these.
Hi Jimbo. Am using a wheeled commode which seems to work ok. Just that M is not weight bearing properly and not putting much weight on his left leg ( the opposite one to the one he broke). When he fell out of bed x 2 in hospital he caused some compression on the discs in his spine, I don't know if this has damaged the nerves to his left leg.
Suzie, My heart goes out to you. Falls are one of the most dangerous things about PSP. More PSP patients die from complications of falls or aspiration pneumonia. They do sell a warning device you can use to detect when your husband is getting out of a chair or bed. They give off a signal when pressure is taken off the device (standing up will do that). There are other devices you can put on the floor and when they are stepped on a warning is sounded. My wife fortunately went to lack of mobility which signals another step toward the end but is a blessing in that she doesn't attempt to walk now. Sometimes you can tell a patient "If you continue to do that......" I'll have to put you in a care home or you'll end up in hospital again" Perhaps that thought of a care home or another hospital visit will get him to stay put until you are present to help him move. Just an idea. I hope you get someone to come in so you can get a break now and then. This is important for your well being and will make you a more happy caregiver.
Suzie, I forgot to mention something. If a patient falls and has to be anesthetized for surgery they often don't recover to the point they were at before it. My brother-in-law is an anesthesiologist and he confirmed that dementia patients often don't recover well from it. One more reason to stop falls or anything requiring surgery.
This seems to be true. My husband fell & broke hip 12/3/13. Had hip replacement and the anesthesia apparently caused delusions. Now, 4 mos later, having more cognitive issues. He's fallen 3 more times since then and 3 more trips to the ER. This disease is tough to deal with. Thank you all for your comments.
Wow! I have been there and done that! Falls happen so suddenly, and if you are the sole care-giver, people outside the situation tend not to believe how fast everything can happen. I love your idea of the invincible suit....I often thought the same thing! And their ability to literally climb over the sides of hospital beds! Same here! God bless, and try to get some others in for a few shifts every week.
Thanks Janet. Nice to know that I am not alone. Still waiting for Social Worker. GP is trying to arrange some re- enablement team to call. Dietician and Powys Carers contact calling tomorrow.
I sure wish I had had this PSP network when I was directly caring for my friend on my own. Hang in there and ask for help whenever you need it. I'm sure you'll do just fine!
I can sympathise with you. My husband has two or three falls a day - I only have to take my eyes of him for a few minutes and he gets out of his chair and falls. I am having difficulty getting him up as he is not so strong. I am looking at lifting devices but am not sure which is best. Any suggestions?
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A real shitty day, literally.
Atropine
What a night
