Hi All, not sure what I'm asking here...! We're at the "in between" stage with dad - mum is just 'trying to manage' with one care visit each week. Last week or two has seen rapid progression and mum is REALLY struggling to cope. Dad can't move pretty much at all, and he's a big bloke whilst mum is very slight. I can't be there 24/7 as have two children and work part time plus deal with every bit of paper work and finances, etc and really am at full stretch right now. I'm desperately trying to persuade mum to have carers in for 2 x 30 min visits each day, just to get him up and down and relieve some of the lifting (a hoist is being delivered in two weeks, after MUCH chasing - initial request made a month ago)! Mum has atrial fibrillation and vascular disease and was in so much pain last night, she thought she was having a heart attack (didn't tell me until this morning)! She is resistant to having more care, as she says they don't really 'do' anything. Yet she finds it really helpful if I go and get the other side of him whilst dressing/undressing. She says he has an intense couple of hours each day where he needs to go to the loo several times and, although he wears pads, she still gets him to the commode on her own. She won't let him 'use' the pads, as she thinks it will distress him. In her view, she can't 'time' this intense couple of hours that stress her out so much, so there is no point having the carers, as he may need the loo when they've gone. She is REALLY at the end of her rope, but just won't give in about extra care I can't give any more than I am doing, and I'm terrified for her. How do I handle this? CHC funding is not getting off the ground right now as she only has care once weekly. Neuro nurse said it would be super helpful if she would agree to more, as it would prove a care need. (We're fully self funded at present). Right now, all 'they' can see is that she's coping. I know she's stressed, but she gets even more stressed about getting more care. How to handle this with compassion but to protect her from herself?!
Is she setting her standards of care for my dad to high? Is there another way to manage the frequent toileting? Convene is no good as dad is too small to fit it. He's had assessment. How does one person manage to change incontinence pads - is this something the OT should be advising on? So many questions! I just can't see a way forwards right now, but so want to help them both!
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Its really hard to see how carers can help when it feels need is so unpredictable. I also know that as long as I cope I won't get help but it is so difficult to give in. It feels like a betrayal. It feels like giving up all control of my life too.
I'm just saying I identify with your mother. But my health is better. So maybe thats the best approach. Her health in order to support him and you.
Thank you Jean. It's so hard isn't it? I do understand the need to keep some control in her life, but at this rate, she'll shuffle off this mortal coil before dad and then he really would have to have full time care. I'm not very good at being assertive at the best of times, but know that something has to give before she does. I do hope things work out for you too x
I agree that prescribed care is useless in this illness, my choice has been that I have three hour blocks daily, OK Rog has been washed etc, sometimes not, depends on the day.
I then catch up on bits ,sleep or go out, works for me. My list for you is
Refer them to adult services if not already.
Get GP to refer to local hospice they fill lots of gaps and are invaluable.
I assume dad gets attendance allowance, SMI payment and don't for get carers allowance although you need to read about that, but could be used by anyone.
Tell them to spend the money, whoever gets in are going to wallop us hard!
Use the "frantically worried daughter " card .Its worked on me ! Your Mum simply can't go on without more help and you have to tell her you are worried sick and can't cope any more knowing they are struggling so much .
Get in your community matron and OT together to do a proper assessment of needs .Its all a battle I am afraid but you have to do it .
Hi - i am not from UK so no knowledge other than than what I read here on how it works there. And we do not have any financial aids in the place i live. I do believe your mom is taking too much on herself - like getting him to commode every time.
In my opinion, you need to start thinking about how you can get additional help on the toilet work coz lifting & turning waist down is the most difficult with PSP patients due to their rigidity. Have you thought about internal catheter? Hows your dad's motor abilities these days? I would not have liked the catheter if my dad was at least a little mobile, but thought it would be too much on ourselves if we think of other options that involved labor. frequent washes is working ok for my dad so far.
We were in same place as your mum , now progressed to carers getting him up and showering him and evenings to put him to bed. Because of frequent hauling to loo he has a catheter in. Then I only have to hoist for bowel actions once or twice a day. Still exhausting but much better than before. We have been awarded CHC funding . While carers are here I relax and have my breakfast or a coffee. It helps a lot. Xx
Bet lots of us can relate to your mum, it's not easy to let someone come into your home and let them do things we think we are capable of, we have just got carers in one hour a day for my hubby and the first week I just wanted them to go, they are helping with showering and dressing in a morning and very oftens we need to change and wash our loved ones several times during the day so it makes us think why, why do we need them, but slowly I am realising that I can sit and have a cuppa or chat on the phone, or potter around, might even have a little walk tomorrow, we can't leave them to do this normally, I had to be talked into this I think I am organised and proud and can manage, but my children were getting concerned for my health and made me realise I have to be healthy to look after my husband and slowly am beginning to get used to the carers and my hour to use as I please. Good luck with your mum.
Hi my partner was wet in bed this morning although he had a pad on and also has a urinal with a bag attached to his bed if he needs a wee during the night so therefore had to get him up and washed and dressed all before the carer arrived as I could not let him lie in it. People just arnt around when you need them. I also feel the carers coming in dont actually do much. I only have them in on a Monday as Ive swapped them for daycare services but this means every morning I have to kill myself in getting him ready for these places. Tuesdays is hospice day and bath but I still have to get him ready and drive him there. Dont think I can keep up the pace for much longer its bloody hard work. (my little rant, sorry) xxx
I really feel for your mum as it is so hard to hand care to someone else as you never feel they will do it properly. Ben has just been awarded CHC funding and I am hopefully having extended care visits so that I can have a bit of time for myself. I know I'm not going to find it easy but know it's essential to switch off and put your trust in the carers. I think the card idea to let her know how worried you are about her wellbeing, I'm sure she will get used to handing over to others for part of the day and let her relax for a while, so so hard for her as it is for many of us.
Love Kate xxx
We have an aide come in 3x a week for 2 hrs each time. That gets dad his bath, groomed, dressed and in easy chair. I agree that planning aide to be here is impossible for bathroom needs. Since all moves are done using a lift that doesn't fit in bathroom the baths are the sponge type. Bowel movements are done as if in care facility, in bed with pad and adult depends. External catheter for urination needs. Definitely not the ideal solution but have to work with what's available.
Thank you all so much for your replies. I've read them out to my mum and I know it helped for her to hear from people in the same boat. The GP at the hospice had a good talk to her yesterday and she finally agreed to more care. Yippee, I thought. Until we got outside and she said "only for one morning each week"!! But I guess it's a start. So I've contacted a new agency, and we're just going to try out some other carers until we find ones that can take care of dad without my mum feeling the need to get involved as well. It turns out she just doesn't feel able to leave the existing carers to it, as they don't seem to know about PSP. So I'm going to be screening the new agency a bit more thoroughly than the last ones. Nothing can prepare you for PSP can it?! We'd be lost without this group. So good to know you're all out there. Thanks again. Sarah x
If male I use a puppy pad . (2). And he sits or lays in this , then I use a smaller pad man shake if .poss and while holding the front up sliding the pad under carefully.
Much easier if the photos cannot ask to toilet you can check remove easily freshen and place another . They keep dry at all times this way without a struggle.
Keep going with talking to your mum about getting more help. I also am a daughter who worries about how my parents are coping. My Mum has had PSP for a couple of years and because of broken bones from lots of falls is now in a wheelchair. Although they did not want carers they have had to accept them as my dad is also in a wheelchair due to MS. They are on their second care company (the first had lovely staff, but could not do a late shift), all the carers are great and really do care. We are fortunate that they can be relied on to do a good job and complete the task rather than have to clock watch. Every day they get mum up and washed and dressed, then my dad and sort breakfast for them. During the day they come to help with changing mum's pads (she is not incontinent but uses them rather than risk a fall while going to the toilet). The second visit ties in with lunch and the carer will fix a sandwich or toast before they leave. An afternoon comfort visit, then a final visit to help mum get to bed safely. This works well for both of them and reduces stress and fatigue a lot. My only worry is that mum does still want to use a toilet for bowel movements which are not regular especially as she also has ulcerative colitis, so we still have that risk area.
As I said, do keep persuading your mum, having others help with at least some of the care will help her. She will still need to do stuff for your dad, so it will not be handling over all the care and not being involved. It won't affect their love for each other just because a carer helps your dad to dress every day.
We have a breakthrough!!! Yesterday saw my mum crash and burn big time. She admitted she just couldn't cope anymore and agreed to carers twice daily. Social are coming out today to do a new emergency assessment. Onwards and upwards....!
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