Every day it is the same. Get up, sort David out. go to work, do a 8-10 hour day depending on what is happenning at work, come home, make dinner, spend an hour trying to feed David. Get interrupted in the middle of washing up to go upstairs to the commode where he will either pee on the floor of mess himself, come back down, sit down, remember the washing up isn't finished. do that, then try and get some washing done, never get to the ironing pile in over three weeks. See what David needs now, finally sit for ten minutes before David wants to go to bed, get upstairs, have a 40 minute blazing screaming row due to frustration because every possible position of the covers is wrong, wake the neighbours with the shouting (who are incredibly nice and never bang on the wall), finally get David comfortable after arguments pleading and fake threats. Come downstairs, collapse with a cup of coffee for ten minutes and contemplate the 18 hour day, go to bed. get interrupted in the middle of the night for some need. get up. repeat.
All this and we get ten minutes together in the day to actually sit together. I don't know who this disease is killing more, me or David.
Sorry, I am in tears here.
Derek
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Ratcliffe
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I am so very sorry for you both. It is impossible to be a carer and work full time. Have you got help in the day while you work?
Do you live in UK or elsewhere? You need more help wherever you live. It is easier in the UK but things are definitely getting worse.
I know the feelings of sheer exhaustion you talk about. I think most of us can relate to that.
Sadly my husband passed away on 22/2. Now I am lost! No winning with this condition I am afraid.
I really think you need to think about more help. That needs to be a priority however you get it. Put it on your to do list now in capital letters so you don't forget! Take care of yourself too or you will have a breakdown.
Derek I hear you, its crap, although my shift is only 5 hours now, as I had to cut it down as I could not leave Colin for that long. So tiring so not exciting, my days, evenings and nights seem to be almost identical to yours.
Getting time to yourself is almost impossible, but try to half hour or so just to do something for you.
Sending a warm hug. It is difficult isn't it. First of all, don't beat yourself up. You are doing an amazing job, working and caregiving. I couldn't do it. Had to quit work and now using up the savings.
Pat yourself on the back and take advantage of any service available or that you can afford.
I have groceries delivered and a laundry service. It makes me a nicer person. Oh yeah, there's the antidepressants too. 😅
It is cruel disease PSP completely relate I still work but have had to drop to two full days and two half days. you are doing a fab job but need help and respite to keep yourself physically and mentally well. Do you have a local hospice or other support network. If you are in the UK talk with your GP and see what is available, sorry I know little of other countries systems.
Look after yourself, everyone on this site understands your frustrations all in the same boat just at different stages of a PSP journey.
Relate to all you describe, Derek. We are in a different situation as we are over 80. It is hard to manage and impossible to stay cool. I rant or cry a lot.
If you are still working then get washing and ironing done for you.
The worst bit is that the loss of quality time with our loved one is incredibly reduced by PSP
Thanks everyone, now its morning I feel a bit guilty for writing that lot, although I suppose it got some angst out of the way!
Thanks for the support everyone, you're all great on here.
To answer a couple of the questions, we do have carers that come in three times a day. At 10 in the morning to get David out of bed, showered and dressed/dressing gown and to get him downstairs and fed some breakfast. They then come back at about 1.30 and 4.30 to do a welfare check, pad change and a quick snack/drinks. That gets me through the day at work, although David does have long spells on his own where he has to just sit in his chair with the radio/tv on.
When I get home from work, I take back over and do the evening meal etc.
What is CHC ? I am guessing it is another name for the local authority supported funding for respite ? David gets up to four weeks a year, although we have to pay just under £160 per week towards it which makes it a very expensive week off.
The council here have been good with adaptations etc, we have had a bedroom converted into a wetroom bathroom, a through floor lift put in and a ramp to the front door from the gate, so that is all very good, but I do not know whether there is other help available in terms of the actual living part if you know what I mean, the day to day stuff.
David gets the full attendance allowance but 90% of that is used to pay for the carer visits (which is what its for after all). I know that if I gave up work to be a full time carer then I would get carers allowance, but that would be instead of unemployment benefit, and if I had that then David attendance allowance would be cut by the same amount, so not only would I lose my salary, we'd also get less between us in allowances too, which is bizarre.
Attendance Allowance should not be cut. Don't understand that. Check again.
CHC is funding from the NHS rather than the local authority. It comes from the local CCG. However your doctor or community Matron would have to instigate it. Or that's what happened in our case. Be prepared for a long battle with them however! For those who get it it makes a big difference.
Don't feel guilty. We have all ranted and many will in the future. It helps to know there are people on your side.
I totally understand, been there done that! I feel your pain. I had Bob put into a care facility where he gets amazing care. I had some guilt with that at first, but I was becoming sick as him, only in different ways. I regained my sanity, and we are both coping very well. I'm not sure the care I was giving at home was what he needed, with my anger, frustration and depression. He's been in care for 3 yrs now and both of us are coping so much better! best of luck to you, please look after yourself, if you let yourself get sick, you are no good to anyone.
Do you have a local hospice? What I learned was that hospices aren't just for people at the very end, but offer fantastic help and advice for people at any stage of life-limiting conditions like PSP. Respite breaks, day activities and treatments, the very best informed guidance for carers. I wish I had understood this sooner when looking after my Mum.
Keep on keeping on. It sounds like you are doing a fantastic job for David. I admire all carers on this site who do what you are doing. Bloody heroes.
Aw, I know. I'm not working right now but I still have so little time with Charles. Have to go to groceries, clean, laundry all while PSP (what that stands for I made up regarding bowels) takes him away from me.
I'm so sorry. We are at last stage but there is more to come. I can't believe it.
Yell at him for his impulsiveness, etc. but it's the PSP talking.
Try to take it easy (easier said than done) and perhaps call in sick one day soon.
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