My dad has carers who come 3x times a day. Double up too. He is in pads and his care needs are attended to him on his bed. He does not like using a commode or doing his business in the pads.
He has gone from being somewhat mobile to no longer being able to walk anymore and he spends most of his time in bed. His movement has become so limited.
The other part of ‘most’ is only when he decides to ‘walk’ to the toilet that is 6 steps away from his bed. Day time my poor mum is managing this as the carers aren’t rightfully allowed to assist him to the toilet but the issue is night time!
He has a fall every night and I am really worried about the impact on my mum here. We ask him to do it in his pad but he won’t listen and makes his way to the toilet but doesn’t get there... He says he can’t do it in his pad and whilst I understand, he doesn’t understand that his legs aren’t working anymore and is becoming a party animal at night keeping mum up.
We could have a night call- but the issue is dad still won’t do it in his pad and he will only wait until he’s alone to then get up and just fall.
Anything else we could do? Him falling every night (1-2 times) is affecting my mum.
We have considered a home but feel he will quickly detoriate plus he doesn’t want to.
Thanks in advance.
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Khalissi
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Hi Khalissi , There are urinals (plastic, handheld ) for males , though it sounds as if your Dad would need assistance with using it . The better idea that will still need his cooperation is an external condom catheter. They have some well designed ones on the market these days and they aren't costly. It also seems as if it's a good idea to have a nursing service come to their residence to assess your Dad's needs and to guide him and your Mom in how to best deal with them ,
Thank you Elise for your advice. Issue we have if refuses everything and we have tried everything except the condom catheter which I will research.
Number 2 is the bigger issue (as well as urine) - he just won’t go in the pad and makes mum assist him during the day and night - goes himself which means falling. We can’t continue and we tell him if he’s in a nursing home there will be no toilet to go in and you won’t even know where it is.
Thank you - he does have a hospital bed but without rails and Occ Health refuse to get rails saying they think it would danger dad with him trying to climb out if we have them.
Hi Khalissi, I really appreciate your dilemma, may I suggest a shower/commode chair with removable pan under. He can sit on it from the bed. He would feel more normal. We had one for our wet room.
I fully sympathise. My mum doesn’t like soiling pads either. My dad (87) is so stressed after 2 years as sole carer, I’ve come back from an overseas job to help out.
Like you we have carers 3 times a day, but obviously need to help mum outside of those visits … and she will try to do it herself if left unattended so she has a frequent flyer card at all local A&E units.
The last couple of weeks have been better as our OTs have gotten us a Sara Steady device to help with transfers from/to chairs and toilets. That makes helping with clothing easier for us and safer for her. 5 days ago we also got a low profile hospital bed as she was reluctant to wake anyone in the night. This bed can be lowered almost to the floor and a crash pad placed next to it for if she tries. They are trying to get us sensor pads so that if she tries to stand from her chair/bed an alarm would be triggered and we could get to her. There are devices that can help you and your mum whilst keeping your dad safe.
I’ve been on night duty sleeping in with mum for a couple of weeks including with the new bed. I’ve found if she doesn’t have lots of liquids after about 7 pm and if she can stay awake till about 10 and be taken to the loo then, then she seems to be able to sleep through till 3 a.m. before needing a toilet visit and will then usually go back to sleep till the morning carer at 7/7.30.
It’s a terrible condition robbing the sufferer of their independence and dignity and putting huge demands on those around them. Keep pushing OTs and carers to suggest solutions to problems. I hope you can find some useful ideas and workable solutions.
I fully understand your worries and I can also relate to the bowel issue that you face. ( My husband had a fitted catheter after a hospital admission so that took away most of the urine issue for us.). The commode was immediately next to his bed and I had a motion sensor which alerted me if his feet began to get out of the bed but it was increasingly difficult to get him onto the commode as his mobility and balance deteriorated. I think a Sara Steady might be the solution if your OT can get him one and can teach your mum to handle it safely but my husband began to lean to one side and it was not recommended for us. My heart goes out to everyone struggling to care for a PSP family member and my thoughts are with you. God bless.
Hi Khalissi, yes sometimes there seems to be no solution to the current problem. I do think, though, that you should stamp your feet and insist on a bed with rails. I can't understand the OCT decision, it's crazy. There's no way a patient, especially with PSP, could climb over the rails. Explain to them, in words of one syllable, that your Dad falling so often is putting his life in even more danger, and they are contributing to that. And they are putting your Mum at risk too. How she manages with him when he falls I don't know. I've been through that myself with my husband and it's no laughing matter. Fortunately/unfortunately, he is now bed bound and does No. 1 and 2 in his pads. Frustratingly sometimes he manages to eject matter AFTER the carer has left and finds it amusing that I have to change him again. So yes your Dad would probably do the same., but at least he's safe.Fight for what you know to be best.
Regarding the bed rails our OTs were the same about refusing them as my mum doesn’t respect obstacles to her moving and, to be honest, I am sure some of her late night wanderings are waking dreams/sleep walking as I’ve had ludicrous conversations with her in the early hours. When we first got the Sara steady dad left it by the bed and parked her wheelchair in the hall … I woke when I heard the crash of her falling over in the hall - she’d got around the Sara steady and wobbled down the hall unaided until she couldn’t 😔 The impulsivity is an issue for my mum and the OTs say a rail would just mean a fall from greater height.
I think these topics are important because of the impact on dignity - and on the options for looking after someone in their own home. I remain thankful that my husband is still able to use the toilet - he wears Tena pants but only for peace of mind since mobility issues sometimes means he gets there "just too late".We went through a phase of him going to the bathroom 5 times a night and I have to come with him to prevent falls. Same in daytime, he cannot be unattended and most of his falls are when he's trying to get to the toilet on his own (no impulse control).
The Parkinson's nurse suggested Convene (the external Cather or "condom" or "peeing in a bag") and we have all the equipment in place to explore that. However, after some investigations (ruling out UTIs and cancers) he was prescribed Tamsulosin, which for now means he doesn't need to relieve himself as often - some nights he even sleeps through - so the Convenes stay in the box for now.
Similarly, he takes Senna in the evening ("for predictable relief when you wake").
Not sure if this gives you any help - I would say it might be necessary to get more support from carers - all of our carers do personal care including toileting and fall prevention.
We used the pull-up elasticated diapers along with a toileting schedule for my mom while she was living at home. Morning first thing, then after every meal, and at bedtime, we (carers or I) would take her to the toilet in a wheelchair and transfer her to the toilet. A Sara Stedy accomplishes the same thing. (Before, when she could still use a walker, we helped her to the toilet with a hand on the walker and a hand on her). The carer would sit in the wheelchair while she was on the toilet and wait with her. The toilet had railings but she would still need to be watched directly because she could keel over or slump and fall off the toilet. If it was taking a very long time, we would lift her off the toilet briefly to give her body a rest from the pressure of sitting. Sometimes it would take 45 minutes or so, and sometimes nothing would happen on the toilet. But she had a chance to use the toilet several times a day. We got an overnight carer in case she tried to get up—the night carer would put her on the toilet. The phase with sleep disruptions, frequent night visits to the toilet, impulsively getting up, and falls is one of the most dangerous and labor intensive times in this illness—probably lasted 12-18 months in her case, until she lost mobility to get up by herself. We did also have a high-low hospital bed that would go all the way to the floor, and at one point, a bed alarm (a pressure mat that would alert if she got out of bed—although sometimes there would be a delay). We continued with putting her on the toilet even when she became immobile and wheelchair-bound (we could manage a transfer without having a lift). When we moved her to a care facility, all the toileting stopped, because they don’t have time to wait so long to watch someone 1:1 on the toilet. So now it’s diapers changed in bed—but often she will wait to urinate until the moment they’re changing her. On the other hand, maybe all the transferring and toilet time was getting hard on her.
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